Hospitals and Privacy

MAKE THIS AN ELECTION ISSUE - Tell the politicians that you won't vote for them unless they give you back your rights, unless they tell you with whom they share your information and under what circumstances, unless they ask your consent to share your information.... see rest of goals under sample letter to Christy Clark or on the home page.

NEW POSTINGS:
- May 6, 2017          - The Children - Update
- February 7, 2017 - Faxing Health Information To The Wrong People
- May 9, 2016            - Children Hurt, Dying In The "Care" Of The Politicians And Is Foster Care the New Residential Schools
- February 23, 2016 -   Collecting Information (or Not) - My Story
- February 22, 2016 -   A Bit About My Health Story
- February 16, 2016 -    Follow The Money
- February 15, 2016 -    Genetic Tests
- February 8, 2016 -      Another Major Privacy Breach in B.C.
- February 4, 2016 -      Using/Patenting Our DNA
- February 3, 2016 -      Right To Know Week
- January 28, 2016 -      Ploys
- January 27, 2016 -      Self-Entitled
- January 16, 2016 -      Complicit
- January 15, 2016 -      Anonymous (Or Not)
- December 30, 2015 -   What You Can Do - Political
- December 29, 2015 -   Our Information Is Not Protected - Part II (added to Jan 06, 2016)
- December 28, 2015 -   Some Participants In Health Ministry Firings
- December 27, 2015 -   Our Information Is Not Protected - Part I (added to Jan 06, 2016)
- December 23, 2015 -   What Can You Do - Political
- Decembeer 22, 2015 -  Facade Organizations
- December 21, 2015 -   Why I Don't Vote (added to Jan 06, 2016)
- December 20, 2015 -   Allowing Political Parties To Know Who Voted (added to Jan 06, 2016)
- October 16, 2015 -      Selling/Trading/Bartering
- October 15, 2015 -    Translink
- October 10, 2015 -      B.C. Services Card
- October 9, 2015 -        I've Returned

May 6, 2017

The Children - Update

Mary Ellen Turpel-Lafond is not longer B.C.Representative for Children and Youth in B.C. What a loss for the people and children of B.C. The position has, not surprisingly, been given to a politician (1).

The care of The Children did become an election issue. The BC NDP and Greens have made promises, in their election platform, to help the children. The BC Liberals don't have anything specific to the children in care but have made promises (see below). It is good that the children became an election issue. BUT, this is only the first step. Because, as we know, politicians will say anything to get elected and frequently afterwards, partially or totally ignore the promises. SO, after the election the people and media, will have to hold the politicians accountable, make sure any changes are beneficial to the children, demand constant updates on the welfare of the children and keep demanding the truth so the children get the care they need. The Children only have YOU, the people, to look after them. As Stephen Gantz says: “If children in foster care are wards of the state, we're all their parents”. (13)

Katie Hyslop, at TheTyee.ca, has written a series of articles on The Children in government care and youths at risk. Go to TheTyee.ca, enter, in the search box, Katie Hyslop to read these articles. Be prepared, some will just break your heart.

B.C. Minister of Children and Family Development Stephanie Cadieux had a complaint:

1. “Shortly after the first article appeared, I received an email from a ministry spokesperson that challenged one statement in one article. The sentence in question describes “Michie,” a young woman who found, as we reported, 'that all the supports she and her foster parents had been receiving from British Columbia’s Ministry of Children and Family Development disappeared' on her 19th birthday. “(4) The government states that there are a range of supports. “Two programs top the ministry’s list of services they want you and youth leaving care to know about: Agreement with Young Adults, and the Youth Educational Assistance Fund.” (4) ”But youth workers and the acting provincial Representative for Children and Youth interviewed by The Tyee emphasized there are barriers to accessing and benefiting from these supports that vulnerable youth can’t overcome.” (4) Katie Hyslop also found that the programs had restrictions which eliminated many youth. Even for those who could qualify the government had barriers; for example, you must be in rehab but there aren't enough rehab spaces. Or, the youth could qualify if they were in a life skills program but there is a long waiting list for this program. “So, yes: everything the ministry says is true: YEAF, AYA, and other programs do exist to maintain support for youth leaving Crown care at age 19. But our earlier reports were also accurate: many youth find those supports hard-to-impossible to access. None picks up automatically when youth age out of care; individuals must find and apply for each one separately. All impose some sort of qualifying restriction. And even when youth do qualify, actual help may not be 'available.'” (4) “Some are available only for former foster youth and not for others in distress (the wider focus of my reporting).“ (4) Children’s representative Mary Ellen Turpel-Lafond called Agreements with Young Adults (AYA) a smokescreen that is not helping these vulnerable teens. (19) This is a common tactic of the government – look at this great program we are offering, but if you look closely at the program you will see all the holes, all the barriers that prevent the targetted people from using the program. I doubt programs will ever be 'perfect” but some (many?) of the government programs are so badly designed/implemented that it looks like they were intended to fail all

but a few. Is it a case of the government getting credit because they have a “program” without actually giving much (money saved to go into the pockets of “other people”)?

The government is also complaining that they are not getting credit for PROMISING to implement Grand Chief Ed John's 85 recommendations and the “significant funding increase the ministry received under Budget 2017 to help improve outcomes for Indigenous families”. (2) Maybe that's because they haven't actually done anything yet except make promises. Maybe they will get credit when the 85 recommendations are actually implemented and not, as so often happens, forgotten or only a few recommendations are implemented. Maybe they will get credit when the money actually reaches the children and is not spent on meetings trying to decide how to spend the money (as has happened). But, maybe before giving credit we need to ask why “so many children had to die and youth in care had to suffer neglect and abuse for the government to be shamed into acting finally on child protection services,” as pointed out by senior economist Iglika Ivanova of the BC Centre for Policy Alternatives. Maybe, before giving credit, we need to ask why the Ministry of Children and Family Development budget will increase 10 per cent this fiscal year (an election year) only to be followed by two years of spending freezes; in other words, the government is giving and then taking away as the Ministry will have less money in future years because the funding won't keep up with even the rate of inflation. Maybe we have to ask why, after all these years of having children in government care, the system is still such as mess. (20)

I am also concerned that Christy Clark has said that additional funding is being provided to address recommendations in Bob Plecas report. (7) Some of his recommendations, supporting recommendations made by Turpel-Lafond, I believe are good and I am glad that there will be money, hopefully to implement them. But some of his recommendations, as identified in a prior post (Children Hurt, Dying in the Care of the Politicians, 2014/04/12), I believe will undermine, even more, the care of the children; in particular, eliminating the oversight function of the Representative of Children and Youth. Will eliminating the oversight function be just a means of hiding what is happening to the children?

Katie Hyslop tried repeatedly for the past three years to get an interview with
B.C. Children and Family Development Minister Stephanie Cadieux, including when she was preparing her series. (6) She also tried to get an interview with Minister Terry Lake. (6) She is still waiting. (6) Cadieux did, however, send another email to criticise her series: “Ministry of Children and Family Development sent emails asking why I had not included additional details about education funds offered to youth aging out of care. Those funds are not available to all youth with care experience, do not provide mental health or addictions help, and are not substantial enough to cover household and school expenses on their own. (6) Unfortunately, I have learned that this is another common tactic of the government. They will respond if they think it makes them look good but will not answer questions that presumably would be incriminating. So, with the government, not answering a question, provides it's own answer, they have something to hide. But, as Katie Hyslop says: “I’d really like to speak with either of them. More to the point, I think, B.C.’s citizens deserve to hear from them, outside of canned media events, on matters as important as the well-being of the province’s most vulnerable youth.” (6) And, citizens do have a RIGHT to hear the truth about how the government and it's programs are run, even if it doesn't make the politicians look good; this is supposedly the people's government with the people's money paying for it. The people have a RIGHT to know what is going on so they can decide if it is acceptable, and if something is

not acceptable, the people can help find solutions.

Paul Willcocks article (9) also has some good suggestions.

“Linda Reid, now the Speaker, then the Liberal critic for children and families, demanded a needs-based budget. Figure out first how to meet the needs of children and families, and what that would cost. Build the budget around that (even if some hard choices might be needed). Instead, the Liberals have treated the ministry like any other, imposing arbitrary and damaging cuts or freezes.”

“Look for a party that doesn’t just promise more money, but a new model.” (9)

“Another simple test is the parties’ positions on aging out. The current policy of basically cutting kids adrift at 19 is destructive and costly. Parents know teens, especially teens who have often experienced difficult childhoods in care, are not magically ready at 19 to survive, let alone thrive, on their own. Look for a party that will increase that age, with phased support that lasts four or five more years, perhaps decreasing as the youths find their way. Polls have found broad public support for increasing the age at which youth lose supports.” (9)

Stephen Gantz has also suggested some good ideas, such as:

• “Ensure youth have at least one adult in their life, family or not, whom they can rely on” and I believe he means even after exiting the system;

• “If they leave care early, let them come back whenever they need to.”(13)

So, no matter which party “wins” the election, whenever the politicians say they are spending money on “fill in the blank” (but especially their own raise and putting money into the fake “prosperity fund” (3)), ask them if they have taken care of the children. Are the children living in a safe, stable home (10, 15, 16), is enough effort being put into finding them permanent homes, are there enough substance abuse beds (4, 12, 14, 16, 17), are there enough mental health services (11, 12, 15, 16), are there sufficient housing and other supports when they leave government “care” (dropping the youth at a homeless shelter should NOT be an option) (4, 13), are there sufficient staff to adequately look after the children (9), have all the children leaving government had a complete, current “aging out” interview and plan (4), so the children/youth can leave government “care” as healthy individuals. Or, to slightly rephrase Paul Willocks, will the government continue to have an underfunded, dysfunctional system that fails the children repeatedly, even when the need for help is obvious. (9)

1. Bernard Richard, Office Representative of Children and Youth

2. Minister's statement on representative's report – BC Ministry of Children and Youth, 2017-03-30

3. 117 BC Liberal Falsehoods, Boondoggles, and Scandals: The Complete List – TheTyee.ca, 2017-04-10 - FALSEHOOD: No LNG Funds Funding LNG Prosperity Fund

4. Ministry Says Supports 'Available' to Youth Exiting Province's Care. How Available? - Katie Hyslop, 2017-02-06, TheTyee.ca

5. Number of drug treatment beds for youth down 25% despite fentanyl crisis – Eric Rankin, 2016-09-27, CBC News

6. Getting BC Ministers to Talk about Struggling Kids Proved Impossible – Katie Hyslop, 2017-02-06, TheTyee.ca

7. Budget Shortchanges BC Kids And Youth, Say Critics – Katie Hyslop, 2017/02/22, TheTyee.ca

8. Absentee caregiver was receiving $8K a month before teen's suicide: report – Andrew Weichel, 2017-02-06, CTV

February 7, 2017

Faxing Health Information To The Wrong People

Nova Scotia – 2006 - 2016

For over 10 years dozens of highly sensitive mental health records were faxed to Lisa Belanger's Bedford spa; faxes which should have gone to a mental health referral office. “She estimates she receives between eight and 14 a year.” (1) She contacted the doctors offices that sent the fax, and “an official at the former Capital District Health Authority, hoping someone there would take action to stop it.”(1) They said memos were sent to all doctors offices telling them to carefully enter fax numbers and to have “the proper preset fax number on the fax machine” (1) But Ms. Belanger continued to receive faxes. Really, how hard is it to preset a fax number?

“She says she subsequently called Health Minister Leo Glavine's office, the College of Physicians and Surgeons and the office of Nova Scotia's privacy commissioner.” (1) * “Belanger was concerned about the personal information on the documents.” (5) She said “she's been repeatedly assured by health officials the problem would be fixed, but the faxes continued.” (5) “She has even made suggestions on improving the way faxes are transmitted.” (1) Finally, in 2016, in frustration she contacted the CBC. (5)

“Everton McLean, a spokesman with the Nova Scotia Health Authority, said doctors are independent and the authority can't tell them what to do.” (1) And yet, “Nova Scotia's Personal Health Information Act says it's an offence to fail to protect personal health information in a secure manner. Anyone found guilty may be subject to a fine of up to $10,000 or imprisonment for six months, or both.” (1) I think if you start enforcing the law there would be change. Also, doctors are paid from tax dollars so, I believe, the government can put conditions on receiving those funds. “Halifax privacy lawyer David Fraser” said "'The larger concern for me is the apparent casualness with which these documents are being faxed and also what seems to be the response when they're told that they're going to the wrong place,"' Fraser said. (1)

When this issue hit the media, the privacy commissioner started to pretend to do something (they do like their name in the media). Privacy commissioner Catherine Tully made recommendations (5) which the doctors are free to ignore. In fact, I suspect that most doctors aren't aware that a report was written much less read it.

“Tully said if the information had ended up in the hands of someone who knew the patient, the harm would be 'close to irreparable.'" (5) We don't know that some unreported mis-faxed information hasn't gone to people who know, or will know, a patient and the patient just hasn't heard about it. We only know about the faxes reported to the media.

“Privacy commissioner Catherine Tully wrote in a report... that momentary inattention and human error by those sending the faxes are to blame for the three cases her office examined.” (5) But, between 80 and 140 faxes went to Ms. Belanger's spa over 10 years. Were all these human error? And, at what point, does human error become incompetency or just disregard for people's rights?

“The report says doctors notified each of the patients whose privacy was breached.” (5) Were these just the patients in the three cases Tully received or all 80 to 140 patients whose personal/health information was received by Ms. Belanger? The report also does not say when or how the patients were notified, nor is there any verification that it is true. A victim of the breaches, whose name was not given, said “he only learned of it this week when Belanger herself contacted him to say his information had been faxed to her last fall.” "'This is pretty serious stuff," he said. "This can ruin people's relationships, careers, a whole myriad of things.'" (2)

As of June 1, 2013, “'The Personal Health Information Act does require that notification goes to somebody,' (bolding mine) said Robert Bay” (a Nova Scotia privacy commissioner spokesperson). "So the question is: Is the notification to the individual whose privacy has been breached or is the notification to our office? The determining factors are the degree of harm or embarrassment that would result from the breach." “He says if the” 'custodians' “who hold the personal information”, the doctors, “determine there is no potential harm or embarrassment, then the person whose information was mishandled may not be told.” “The commission said it has no way of knowing how many breaches resulted in notification to patients.” (2) In essence, unless the commissioner has been notified, they have no way of knowing if anyone was notified. And, why would you notify the commissioner if there is no potential of harm or embarrassment to the patient and not when there is? Why are the doctors given the right to make this decision? Isn't that a conflict of interest? How often do you think doctors will decide “no harm done” and not inform patients that their privacy was breached and not inform the privacy commissioner. Not that notifying the privacy commissioner is any great help. All they can do is write a report and/or encourage/recommend as they have no enforcement powers.

North West Territories - 2010

On four separate occasions, in a two month period, confidential files were mistakenly faxed to the CBC from the N.W. T.'s main hospital. If this weren't so serious, it would be funny.

The hospital then imposed a faxing freeze “on any medical documents unless it is an emergency”. (4)

“In addition to the freeze, the hospital has also implemented a temporary policy requiring two staff members to oversee the faxing of confidential documents, Lewis said” (CEO of Stanton Territorial Hospital). (4)

“This 'double-checking' policy, which is meant to ensure the faxes reach the right destination, will stay in place until a permanent solution is found, she said.” But, as usual for the government, “she wouldn't give specific details about any measures being taken”.(4)

In 2012 the CBC received its 6^th sensitive medical fax in two years. (6) This came from Kugluktuk, Nunavut health centre. “The fax included information about the patient and their sexual health history.” “In a statement, the department said it's investigating. It added that health centres are required to use pre-set speed dials for confidential patient referrals”. (6)

“At the time, Health Minister Tom Beaulieu said a summer student sent that fax. The department has not yet said if any action was taken, or why the faxes continue to come to CBC North in Yellowknife.” (6) It certainly illustrates how important privacy is - the faxes continue and very sensitive patient information is given to a summer student. But the government/medical business will tell you that it takes your privacy very seriously -- just propaganda.

Alberta - 2014

“Entering incorrect telephone numbers into fax machines is being blamed for more privacy breaches of personal health information by Alberta Health Services.” (3)

“Documents obtained by CBC News through access to information show that Alberta Health Services were regularly (bolding mine) sending faxes intended for Strathcona Home Care to a custom home builder in Sherwood Park over a two-year period.” (3) “At one point the builder was receiving as many as one fax each week.” (3) “Despite repeated calls, the faxes continued until company owner Dianne Ingram sent AHS a fax of her own.” “She scrawled, "You have the wrong fax number!! Stop faxing us!!." (3) Also faxes were sent to a manufacturing company. (3)

“Patients often go uninformed when their information is disclosed.” (3)

“While AHS is not obligated to report breaches, Hamilton (Brian Hamilton, with the Office of the Alberta Information and Privacy Commissioner) said his office encourages AHS to inform all patients whose privacy has been breached.” (3) Sorry, but, in my opinion, “encourage” is essentially meaningless.

“'This is highly sensitive information and an issue of public trust," privacy commissioner Frank Work said. "How can the public have faith in public bodies if they can't provide security for personal information?"' (7) (Bolding Mine). He was referring to laptops but it is just as relevant to faxes.

'"It's surprising," Hamilton said during an interview. "The health sector in particular, spends millions of dollars on information systems with secure access, and yet people keep faxing."' (3)

“Sending personal information by fax is a less secure method of transferring information compared to encrypted emails, he said.” (3)

Dr. Verna Yiu, with Alberta Health Services said "We do rely on cooperation of the recipient to let us know that” (they have received a mis-fax), “and I would have to say that in general (italics mine) people are pretty co operative about that." (3) This is NOT a privacy policy. This is NOT how you protect patient information.

Some Questions:

1. In all these cases, the doctors offices, violating patients privacy, were not identified. Should they be? Would you want to know who is not taking care of your information?

2. Most people who violate people's privacy are either not disciplined, disciplined (ex. A day or more off without pay), or fired. Should the penalties be stiffer? Do we have a right to know what disciplinary action is taken under what circumstances so we can determine if this is sufficient or excessive?

3. Don't you think THE PATIENT should be notified in all cases so the PATIENT can decide the degree of harm in violating the patient's privacy?

4. Should there be a central phone number that people can call when they receive medical information that belongs to someone else?

You may have noticed the trend by the government/medical system: it's someone else's responsibility, there is nothing we can do, false promises to fix it or we'll look into it but the people never hear if anything was ever done to fix the problem. And if it hits the media, the “problem” is sent to the privacy commissioner, who writes a report. The report may say “Order No.” but it is not an order, it is a recommendation which the medical system is free to, and I suspect in most cases does, ignore. So what changes – NOTHING. Mistakes are made, and I think people would be mostly forgiving, if they knew concrete steps had been taken to fix the problem. Instead we get propaganda – we'll fix it, trust us, trust us. Save the money from all these useless, money-sucking, reports and put it into software/training for something positive such as end-to-end encryption and enforcement; privacy might be protected and money saved.

And, these violations are only the ones that are reported to the media. These are, no doubt, the proverbial tip of the iceberg. I suspect there are some medical people who are very careful about patient's privacy. But, we don't know who they are, therefore all are suspect.

I am deeply grateful to Ms. Belanger and Ms. Igram for sharing the information with the media; and to CBC News for publicising the problem. It is the only way we are learning that our information is not protected. And, until we know the truth, we cannot try to fix the problem.

* I contacted a Minister of Health, Victor Boudreau, twice and requested an organizational chart/description of the health system in a province (who reports to whom and what are their responsibilities). Never got a reply (see future post tentatively titled “My Story – Part II).

1. Mental health records sent to Nova Scotia spa in error over last decade - Yvonne Colbert, 07 Apr 2016, CBC News

2. Victim of mental health privacy breach in Nova Scotia feels “very exposed” - Yvonne Colbert, 08 April 2016, CBC News

3. Unsecure faxes put health data of Albertans at risk – Kim Trynacity, 10 Feb. 2014, CBC News

4. N.W.T. Hospital clamps down on medical faxes – 07 Jul 2010, CBC News

5. Privacy commissioner says doctors should move faxing patient referrals – Yvonne Colbert, 23 Nov. 2016, CBC News

6. CBC Yellowknife newsroom gets 6^th medical fax in 2 years – 30 Jul 2012, CBC News

7. Security on stolen laptops was inadequate: privacy commissioner – 24 Jun 2009, CBC News

May 9, 2016

Children Hurt, Dying In The “Care” Of The Politicians And Is Foster Care The New Residential Schools

"Children are entitled to be protected from abuse, neglect and harm or threat of harm.” (1)

This isn't about privacy but it is about the children. And I want to help raise awareness about how they are being treated by the government.

There has been “a number of very tragic incidents in a relatively short period of time”; (2)

– Alex Gervais (3), Nick Lang (4), Carly Fraser (5), Danny Francis (6), Paige Gauchier (7)(8), Alex Malamalatabua (9)(10), and Isabella Weins (11), and others (11) (12). You may have to go directly to the Times Colonist and Vancouver Sun's websites to access their articles. Also, I encourage you to read Paige's Story, a report by the Representative's office about “abuse, indifference and a young life discarded”. (7)(8) “It is a startling example of a collective failure to act by multiple organizations and individuals who should have helped Paige” (7) and Ministry abused authority in case of B.C. father sexually abusing his children: judge, Eric Rankin and Tamara Baluja, 14 Jul 2015, CBC News (JP case - "This is the very first case in Canadian history where a mother has succeeded in holding a child protection agency liable for misfeasance in public office," Hittrich said)

In the case of Alex Gervais, 23 youth homes, with 33 children, were abruptly closed down when the Representative's office “brought these concerns to the ministry's director of child welfare after receiving calls from some of the young people in care”. (3) “Part of the documents also included a review of caregiver concerns from 2008 to 2014 which revealed "several ongoing themes" with caregivers including the following allegations: Using substances, criminal offenses, inappropriate physical discipline, assault of a teen in care, viewing pornography, domestic violence between caregivers;” (3) And concerns about unsafe living conditions that included “improper issuing of medications, a caregiver carrying a weapon, and exposure to abusive language”. (16) (43)

“Turpel-Lafond said senior ministry staff told her directly that none of the 33 displaced youth from several group homes would be moved to hotels”. (2) Yet Alex Gervais was placed in a hotel with minimal supervision for 49 days, until his death. (13) The number of days Alex was in the hotel varied in reports from three to five months so it appears, initially, no one knew how long he had even been there. (2) This hotel placement was in contravention of Ministry policy. (14)

It also became apparent that B.C. Minister of Children and Family Development Stephanie Cadieux has little or no idea what goes on in the Ministry. “She said both she and the provincial director were under the impression that no youths were being housed in hotels when Gervais died.” (15) (bolding mine) “B.C.’s children’s minister has ordered an immediate review to determine whether there are more foster kids in hotels that senior officials don’t know about, one day after The Vancouver Sun reported a youth in foster care was living in a hotel and died when he fell out a window”. (16)
"In September, Cadieux told The Sun that 23 foster youth had been placed in hotels in the previous year”. (17)(43) “the ministry was wrong again. In fact, 117 kids — five times its original estimate — stayed in hotels between November 2014 and October 2015”. (18) “In fact, because some children were placed more than once in a hotel during this time frame, the total number of hotel stays was 131”. (18) “She had no explanation Wednesday when asked why the initial number was so inaccurate”. (19) “She later claimed it was because the information had not been properly tracked”. (20) “NDP leader John Horgan issued a statement that accused the provincial Liberals of purposely hiding the true number of vulnerable youth they stuck in hotels, until forced to reveal the truth by Turpel-Lafond”. (18) “According to the new report, the ministry's 'expectation' is that care workers would provide constant supervision for a child during these hotel stays as well as provide opportunities to participate in recreational activities. (18) (bolding mine)

“The minister in particular and the senior ministry staff did not have a strong handle on what was going on with the residential placements of vulnerable youth in care.” (17) (29) “Representative Mary Ellen Turpel-Lafond said it took time to have 'difficult discussions' with the ministry, but she is glad to be working together now to find solutions”. (17) “It required them to make a pretty frank admission that things were not operating appropriately,” she said in an interview. (17) So Turpel-Lafond and Cadieux prepared a joint special report. (21) Then, “Cadieux disagreed with one of its findings, that the use of hotels reflects 'significant shortfalls' in other available placements, including foster homes, emergency beds and group homes” (apparently she didn't read the report before she signed off on it). (13) She said it was just a communications problem because beds are available. (13) Then she changed her message again and said "Our ultimate goal is to eliminate hotel placements entirely. Government can't do that alone however and we need more people to step up, get trained and work with us to provide kids in care with the stable homes they so desperately need and deserve”. (22) So, apparently it isn't a communications problem but a lack of foster parents problem. I suspect she has set-up a scapegoat (blame the people) in case the Ministry gets caught again placing children in hotels. You just can't trust a politician.

Apparently, Manitoba worked over a two-year period to abolish the use of hotels for children in care by adding 55 emergency shelter beds and 114 emergency foster beds, or so they say. (19) I'm not aware that this has been proven.

Cadieux said her responsibility is to set “'high level direction' for the ministry” (as given to her by Premier Christy and her handful of people running the government - see Why I Don't Vote – Part II), and to speak about anything that goes wrong (15), which I guess would be saying the scripted talking points she's given. And, of course, going for photo-ops. “But as a minister of the Crown, she is responsible for everything her ministry does within its charter. By attempting to evade this longstanding principle, she makes a mockery of ministerial accountability”. (23) Can you imagine the CEO of a company saying “I had the directions written for the company to follow and I have no other responsibility as to the operation of the company. How long do you think she/he would be employed? Do you think parents can say they did their job by directing the writing of policies for their children to follow, but they are not responsible for whether their children follow those policies. The Premier/Minister can delegate but it is still the Premier/Minister's responsibility to ensure that the delegates are doing their work appropriately.

Plecas report (24)

Cadieux hired Plecas, and his team, to do a review of the J.P. Case and offer recommendations. His review is a review of the system. Plecas refers to it as an “independent” review but it is not. When reading the report one has to keep in mind that Plecas's career was in the government (see Plecas Review, Appendix 2), and he is an “insider” (25). Also, coincidentally (I think not), his daughter Bobbi Plecas was moved to the Office of the Premier on July 30, 2015 just before her father was hired in August 2015. (25)(26)

He provides, what appears to be, a good summary of the Ministry's roller-coast ride due to continual changes in direction by Deputy Minister's. The Representative said “I was pleased to see that Mr. Plecas’s document endorses recommendations that my Office has made continually in recent years – including those calling for more funding and adequate staffing for MCFD”. (27)

However, his toadiness or bias can be seen in some of his recommendations. For example:

a. Case-specific

“The Ministry for Children and Families said Tuesday that the review of Gervais’ death, conducted by the provincial director of child welfare, would be case-specific and not a look at systemic issues in the child welfare system”. (28) Plecas also recommended “that these cases be looked at as case-specific and not be applied universally”. (24) If they did a very narrow review would they have noticed (much less reported):

- that the problems at these group homes had been going on for 6 years (2008 to 2014) and no one in the ministry did anything (presumably children and case workers passed this information up the chain of command) until the children went to the Representative. (3)

- what effect did this have on the other children living in these unhealthy (physically and emotionally) group homes; this was not addressed in any of the articles.

- that 117 (133 with repeat stays) children were being warehoused in hotels, with minimal supervision, contrary to policy.

- would they have noticed the Minister and senior staff had so little awareness of what was happening in the Ministry

- and would they have noticed all the larger issues, including other “gaps” in the system that even BC premier Clark had to admit existed. (28)

Looking at the specifics of the case, and not seeing if it extends to the rest of the system, is just a way of covering up management failures. It also prevents any improvements.

b. Blame

Plecas says that no one should be laying blame until all the facts have come out. To a point I believe this is true. Cadieux “pointed the finger at ministry staff “(15) and Clark blamed the agency (30). But ultimately Clark and Cadieux are responsible for whatever happens in the Ministry.

Yet, Plecas wants to share victim's (children's) sensitive personal information with politicians so they can have a debate based on “facts”. This sounds like victim blaming. And, let's face it, the politicians do not have constructive debates in the Legislature. They may have been given a briefing and questions to ask/answer. They are not allowed to stray from their talking points. In fact, the Legislature debate has become such a farce that even the politicians are reducing the number of days they “sit”. And, how would sharing Alex Gervais' personal information have made a difference; it was not about his vulnerabilities but about multiple system failures. The Ministry takes in children because they are vulnerable. It is the Ministry's job, not just to provide housing, but to provide the resources to heal these children's vulnerabilities so they will leave the government care physically and mentally strong. If a child leaves the system vulnerable or dies due to vulnerabilities this is not the child's fault; the Ministry failed because the child is still vulnerable.

I do agree that calling for the resignation of the minister (Cadieux) isn't constructive. After all, one useless, putrid politician will simply be replaced with another useless, putrid politician and nothing will have changed for the better.

c. Mary Ellen Turpel-Lafond

Plecas wants to get rid of the Representative's oversight function and he would like to do it next year (2017) when her current contract expires. I totally disagree with this. But I am not surprised that the government would want to get rid of her. I'm only surprised she has lasted as long as she has. As Plecas admits “she's a thorn in their side and she's suppose to be”. (24)(31) The politicians don't like their “mistakes” brought to light regardless of the effect on the children. So, the problems with eliminating the Representative's oversight function are:

aa. The politicians cannot be trusted

The politicians would much prefer to cover-up all critical injuries and deaths which show government mismanagement. For example, all the contradictory statements by Cadieux, plus her refusal to accept responsibility. Another example, “Agreements with Young Adults (AYA) a smokescreen that is not helping these vulnerable teens”.(32) Cadieux said the Ministry has “the fewest children in care in the past 19 years” (31) but the question is why. Is this because the children are not in danger or because the government is leaving children in family, or other, situations that are not safe? Are they “delegating” the children to other organizations so the politicians can claim the children are no longer in “government” care?

With regard to the group homes in the Alex Gervais case, the appalling situation went on for 6 years with nothing being done until the Representative stepped in.

Cadieux also said there were 110 more social workers this year (31) but the Representative stated “that over the same time period 91 social workers quit for various reasons, including burnout, leaving just 19 new workers”. (31) So, Cadieux was trying to mislead people.

The hospital reviewed the Malamalatabua case but won’t share the report with Turpel-Lafond, citing privacy laws, saying doctors won’t speak openly in the future if they think internal reviews are shared with her office. (10) Why? What are they hiding? Would they give this information to the police if the police were conducting an investigation? I think there needs to be discussion as to what can be shared and under what circumstances regarding the children's injuries and deaths.

bb. Plecas assumes the quality assurance program and public information system will be implemented and successful.

I find it “odd” the Plecas would suggest that everything will be fixed, and the Representative's oversight function redundant, possibly as soon as 2017 when he stated “but twenty years after its formation the Ministry continues to struggle, not equipped for this century, and in need of repair. There clearly remains a fair distance to go”.

cc. Plecas assumes the politicians won't decide to change things shortly after the Representative loses the oversight function.

Yet, as Mr. Plecas pointed out in his report, the politicians have a penchant for changing direction on a dime.

dd. Does anyone really think the politicians won't try to cover-up any wrong-doings or prevent any bad publicity?

Which means the children will suffer in silence.

ee. Lack of Enforcement of the Child, Family and Community Service Act (CFCS Act)

“In her report Lost in the Shadows, the Representative called for the Attorney General to review the reasons for a lack of enforcement of the CFCS Act in B.C., and take steps to promote compliance, if necessary. The Representative fails to understand what action was taken at the level of the Attorney General as there has been no direct follow up on this issue since that report was issued on Feb. 6, 2014”. (8) It again sounds like the Act is just words on paper to the politicians.

By having Turpel-Lafond, or someone of her calibre, with the current responsibilities, what could happen:

1. If the Ministry is doing its job effectively, protecting the children, then the Representative won't have any investigations and few recommendations.

2. With less work, the Representative's office could focus on other duties like advocacy.

3. If the government starts screwing up again, the Representative would still have the mandate to do the appropriate investigation(s).

4. The people can have some trust in the protection of the children in government care because of the oversight role of a Representative of the calibre of Turpel-Lafond.

5. Turpel-Lafond not only exposes the mismanagement of the Ministry but provides recommendations to improve the system (help the children)

If you read any reports by the Representative's office you will see the incredible, beneficial impact she has had on improving the care of the children but there is still lots to do. You may also want to read "Meet the Representative" on the Office Representative for Children and Youth website which explains why she is so good at her job.

Plecas wants, instead, a ministry spokesperson “to ensure the public is informed not only of the Ministry failures but also of its successes”. Do you really think the government is going to allow one of its toady's to advertise its failures? If we had transparency all the time a spokesperson wouldn't be necessary because the people would know what the ministry has been doing and the pros/cons. This sounds like it would just be a propaganda exercise by the government. And this would presumably “shield” the Minister and provide her/him with one less thing to do.

Al Hoolaeff, Alex Gervais’s former primary caregiver at an Abbotsford group home, “said he’d prefer for Turpel-Lafond’s office to operate at further remove from the government — more like the Independent Investigations Office of B.C., which probes incidents involving police that lead to death or injury”. (34) “It’s important that these things are investigated immediately and that any of the ministry files need to be seized immediately — just like if it was a police investigation — where they can’t be tampered with, can’t be edited,” Hoolaeff said. (34)

Plecas wants new appointees to the Representative's position to serve only one term of six years. If they are doing a good job, or an incredible job like Turpel-Lafond, why would you replace them? A new person would have to learn the job, learn the issues, and probably won't see if their recommendations are implemented. This constant turnover of personnel is part of the problem as Plecas himself pointed out in the history of the Ministry. But perhaps if the Representative's are good little toadies they can get another job in government after six years.

Turpel-Lafond is asking for an increase of $20 million per year. “Earlier in the day, Mary Ellen Turpel-Lafond, the representative for children and youth, urged the minister to spend $20 million more annually to hire 250 more staff, 200 of them social workers. She made the comments after releasing a report that said some B.C. child welfare offices are perilously understaffed, leading to a consistent failure to meet the provincial government’s own timelines and rules for child protection”. (35)(33) Two editorials by the Times Colonist explain why this is needed (13, 31), plus a CBC News article (35), and Paige's story (8); for example, front-line workers are grossly over-burdened (33) and children are being left at risk. (33) (7) “I find it particularly concerning that, over the past four years, the proportion of MCFD’s budget that is dedicated to child protection has actually decreased in real terms, leaving alone the impacts of inflation”. (24) “When government steps in to act as a child's guardian and protector, it also takes on a financial burden associated with its decision”. (24) Plus “NDP critic Doug Donaldson said the report shows, though, that the ministry under-spends its child protection budget by millions every year”. (33) Presumably, this “savings” goes back to the politicians for other uses.

The politicians can “afford” large subsidies to the LNG companies (36), Christy's $500,000 private jets (not including other forms of transportation such as commercial flights)(37), and hiring Christy's “inconvenience”, Ben Stewart, to go for a prolonged stay to Asia (see Why I Don't Vote - 4c), all on the backs of the children. The politicians could take some of that money for the children, AND/OR, they could take the $100 million Christy transferred into the prosperity fund (which is not linked to LNG revenues) and use it for the next five+ years for the children. After all, finance minister Mike De Jong said, about transferring money into the prosperity fund, "The fact that we would take a small amount of the chequing account and transfer it into a small savings account to look ahead is a natural thing for us to do". (38) Well, lets look ahead and transfer it to the children. After all, it's just a small amount. But, conning the people into believing LNG money has gone into the prosperity fund, for the benefit of Christy's next election campaign, is more important than the children.

The issue is not about having the money but how it is allocated. But then, the children don't vote, they don't contribute to the political party fund, they don't give out brown bags of money and they can't hire out-of-work politicians. The children have no value – to the politicians.

And just giving money isn't enough. Hiring more front-line social workers isn't enough. You have to have systems in place to show that the money is being used effectively and efficiently. For example, in a 2013 report, the Representative “said the province provides about $90-million a year to 23 delegated aboriginal agencies but that there has been no comprehensive assessment of how they are performing and whether they are improving outcomes”. (9) I am also curious as to why 23 group homes were closed which affected 33 children. Was there on average of 1.5 children per group home?

Unlike LNG, money spent on the children has a known, direct return. Studies, reports and just common sense tells us that children, most or all, that are returned to health, physically and mentally, go on to lead healthy, productive and, I suggest, mostly happy lives. They contribute to society in a variety of ways and reduce costs in hospital, welfare, shelters, police, courts and other services. (32) And, in many cases, these healthy children, as reported by the Representative, will raise healthy children breaking an intergenerational cycle of trauma. (8) The returns on healthy children just keep happening, year after year, generation after generation.

Plus, the Representative says her office “needs an extra $656,000 to handle the increasing number of investigations into child injuries and deaths”. (31) “The need to do more detailed probes, she said, is the result of an 'astronomical' rise in the numbers of deaths and critical injuries reported to her office. She received 82 such reports this September, compared to just 28 during the same month in 2014”. (10) “The main reason for this increase was that her office re-defined what constitutes the critical injury of a child, prompting government social workers to report more cases”. (10) I'm sure this was necessary or the politicians would not have allowed the change in definition. “In addition, she’s asking for $958,000 a year to boost advocacy on behalf of children and youth seeking a permanent home”. (31) However, her budget has been frozen at $8.18 million for four years”. (34)(10) The safety and well-being of children are the paramount considerations and these are not, relatively speaking, large sums of money. After all, if $100 million is a small amount, then $1.6 million is miniscule. (38)

Some people are suggesting that foster care may be the new residential schools. (39) This refers to the seizure and treatment of aboriginal children. However, what should not be ignored is this also includes the treatment of all children (aboriginal and non-aboriginal children). Some children have, relatively speaking, positive experiences in foster care (as I have read, some did in residential schools); by that I mean they were not beaten/starved/ molested/emotionally abused, etc. while in residential school/foster care. But many others cannot say the same. And, can you imagine saying to your child (and the government is the parent of the children in foster care), happy 19^th birthday, as you hand them garbage bags containing their belongings, and show them the door (the permanently closed door). (8)

If foster care is the modern day version of residential schools then, at least, we know where to start laying the blame, the self-serving politicians - BC Premier Christy Clark, BC Minister Stephanie Cadieux, Manitoba Premier Greg Selinger (40), Minister Kerri Irvin-Ross (see Why I Don't Vote – Part II) and those who came before them. I think of these people as the monsters because they abuse and kill children through their indifference, their greed, and their narcissism.

The Union of BC Indian Chiefs (41) and The BC Federation of Teachers (42) are speaking up and demanding better care of the children. I can only hope the rest of the people of B.C. stand up for the children (and other provinces/territories), and, at the very least, demand more money for necessary resources, demand a better system that cares for them, demand that the Representative's office retain its current mandate and the position of Representative be held by Mary Ellen Turpel-Lafond or someone of her calibre (not some government toady). “Health’s budget is protected because both of BC’s political parties know this is essential for electoral success”.(24); people need to make sure that the children's budget is protected and not decreased in real terms, unless it can be honestly justified. These are CHILDREN.

1. When Foster Care Hurts – Pieta Wooley, 5 Jul 2013, TheTyee.ca

2. Teen in B.C. provincial care dies in fall from hotel window – 23 Sep 2015, CBC News

3. B.C. youth care home investigation finds unsafe conditions – Enza Uda, 08 Dec 2015, CBC News

4. Nick Lang's grieving parents say B.C. ministry worker 'didn't care' about meth-addicted teenager – Natalie Clancy, 13 Oct 2015, CBC News

5. Mother denied details about daughter's case – Les Leyne, 11 Nov 2015, Times Colonist

6. Danny Francis takes own life while in ministry care, friend says – Natalie Clancy, 03 Dec 2015, CBC News

7. Rcy news release pg final.pdf – Paige's Story Prompts Representative To Call For New Approach To Helping Vulnerable Aboriginal Girls - 14 May 2014, B.C. Representative For Children And Youth (News Release), BC Representative For Children and Youth website.

8. Rcy-pg-report-final.pdf – Paige's Story – Abuse, Indifference And A Young Life Discarded, May 2015, B.C. Representative For Children and Youth (see website)

9. Young man dies while in care of B.C. aboriginal agency - Wendy Stueck, 03 Dec 2013, The Globe and Mail

10. Children's advocate wants more money to investigate youth deaths, Lori Culbert and Rob Shaw, 20 Nov 2015, Vancouver Sun (a paper I wouldn't buy)

11. Mother sues B.C. Ministry of Children after baby dies in foster care – Chantelle Bellerichard, 24 Mar 2015, CBC News

12. Near Daily, a Child Dies or Is Hurt in Care of Province – Pieta Wooley, 11 Mar 2013, TheTyee.ca

13. Editorial: Child ministry needs overhaul - 22 Jan 2016, Times Colonist

14. Stephanie Cadieux says answers coming in death of Danny Francis, other teens – 04 Dec 2015, CBC News

15. Teen's death leaves Minister Stephanie Cadieux 'angry' policy ignored – 24 Sep 2015, CBC News

16. B.C. children's minister orders urgent review to see if other kids in care are stuck in hotels - Rob Shaw and Lori Culbert, 23 Sep 2015, Vancouver Sun

17. B.C. government agencies to review foster children in hotels - Lori Culbert, 10 Nov 2015, Vancouver Sun

18. New report shows 117 B.C. foster children were placed in hotels - Lori Culbert, 13 Jan 2016, Vancouver Sun (a paper I wouldn't buy)

19. 117 vulnerable youth placed in hotels, ministry says - Lindsay Kines, 13 Jan 2016, Times Colonist

20. B.C. commits to public reports on teens placed in hotels after joint review - The Canadian Press, 13 Jan 2016, Times Colonist

21. The Placement of Children and Youth in Care in Hotels in British Columbia – A Joint Special Report, Representative For Children And Youth, Ministry of Children and Family Development, January 2016

22. News Release – Joint report results in action plan to reduce hotel stays as placements – 13 Jan 2016, Ministry of Children and Family Development, Representative for Children and Youth

23. Editorial: Minister must be responsible - 05 Oct 2015, Times Colonist [please note, paragraph 5, I believe there was an entry error and “Cadieux' death” should be “Gervais' death”]

24. Plecas Review, Part One: Decision Time – A review of policy, practice and legislation of child welfare in BC in relation to a judicial decision in the J.P. Case - Bob Plecas, 04 Dec 2015 (you can do an internet search or go to the Ministry of Children and Development/Ministry Reporting/Plecas Review which was on the right hand side, or go to the website and do a search)

25. Bob Plecas is a Friend of Mine - Vaughn Palmer (updated) Bcveritas.com/index.php/2015/07 (a blog by Vaughn Palmer)

26. B.C. cabinet shuffle puts Fassbender in Victoria amalgamation talks – 30 Jul 2015, Times Colonist

27. representative statement-dec 14.pdf - 14 Dec 2015, B.C. Representative For Children and Youth (see website)

28. Aboriginal agency wants broader scope for review of B.C. teen's death - Lori Culbert and Rob Shaw, 01 Oct 2015, Vancouver Sun

29. Dozens of foster children lodged in hotels over year – Vancouver Sun, 26 Sep 2015, Times Colonist

30. Death of Alex Gervais sign ministry needs to reorganize, says critic – 29 Sep 2015, CBC News

31. Editorial: Work together for the children - 21 Nov 2015, Times Colonist

32. B.C. minister, representative disagree on 'aging out' fixes - Tracy Sherlock and Lori Culbert, 01 Jan 2016, Vancouver Sun

33. Two few social workers, too many at-risk kids - Lori Culbert and Rob Shaw, 09 Oct 2015, Vancouver Sun (a paper I wouldn't buy)

34. Child welfare report leaves former caregiver with little hope - Bethany Lindsay, 15 Dec 2015, Vancouver Sun

35. B.C. child protection service unsafe and in crisis: report - 08 Oct 2015, CBC News

36. Three Wacky Accounting Numbers for LNG and Shale Gas – Andrew Nikiforuk, 29 Feb 2016, TheTyee.ca

37. Air Christy Climbs to Half Million Dollar Mark – Bob Mackin, 25 Feb 2016, TheTyee.ca

38. B.C. LNG prosperity fund to get $100 million, but not from LNG – 15 Feb 2016, CBC News

39. Aboriginal Children and Child Welfare Policies – Stephanie Laskowski, 07 Jul 2014, LawNow Magazine

40. Lack of foster spots keep Manitoba kids in jail, watchdog says – Chinta Puxley, 14 Apr 2015, The Globe and Mail

41. Open Letter: Plecas Review Must be Withdrawn and RCY Recommendations Fully Implemented - Union of BC Indian Chiefs, 17 Dec 2015, First Nations Drum

42. BCTF calls for children's minister to resign after latest teen death - Tracy Sherlock, 16 Mar 2016, Vancouver Sun

43. Drug use, caregivers with criminal histories in B.C. youth group homes, report alleges - Bethany Lindsay, 08 Dec 2015, Vancouver Sun (a paper I wouldn't buy)

February 23, 2016

COLLECTING INFORMATION (OR NOT) – MY STORY

I started to get copies of my medical information that I didn't already have.

(1). My primary doctor's office first demanded to know why I wanted a copy of my records. I told them “because I want them”. I didn't feel I needed to provide an explanation; a reasonable office employee told the other to just give them to me. But the other one said that I would have to talk to the office manager, who wasn't in the office. I finally contacted her and she said some of the records might be stored in the back and they would have a hard time getting them. I asked for them anyways. In fact, if she had checked the computer she would have known that I had started seeing the doctor after they started computerizing their records. But some doctors do all they can to avoid giving out copies of records to patients.

Then she demanded to know why I wanted the records. She said there were different prices depending on whether they were for me or for my lawyer. I asked what the difference in price was and she refused to tell me. Is it legal to charge different prices for the same thing (assuming she was telling the truth)? And are they legally allowed to refuse to give me a copy of my information unless I tell them why I want it? Are they legally allowed to do everything they can to discourage me from getting a copy of my records? Oh yes this is the medical business who don't seem to care about the law, unless it suits them.

All my information was, if fact, in their computer. My primary doctor charged $27 and as the office manager said, they just printed it off the computer; is this expensive paper, another way to discourage people from getting their records or just a money grab? My medical records were put in an envelope, unsealed, and left at the front desk for a few days; Staff and patients are all round the desk. Another middle finger given to privacy.

I was delayed picking up the envelope because I wanted to pick up this information and the “d”'s at the same time. Of course, I had expected the envelope to be sealed.

(2) The first surgeon I had seen refused to give me a copy of the information that had been collected.

(3) No problem with my surgeon. I just had to go in and sign off at the desk that I had received the copies which was fine. Except that there had been communication between the surgeon and the “d'. The surgeon wasn't sure the information could be released without the other doctor's approval so he didn't give it to me (he could have just phoned the “d”).

(4) I phoned the “d”s office and asked for a copy of my medical records and if he gave my information to the registry. I had asked my primary doctor and surgeon but neither of them knew who gave my information to the registry (or so they said). At the “d”s office I was told that I had to make an appointment to get this information. Now you know where some your tax dollars get wasted. As I am entitled to a copy of my medical records I made an appointment. When I went into his office he started taking the conversation in a different direction so I stated, again, that I just wanted my medical records and to know if he gave my information to the registry. Again he took the conversation in different directions, probably trying to justify the visit, but when I wouldn't play ball, he finally said essentially “So, you just want a copy of your medical records and to know if I gave your information to the registry.” He said he didn't have any records so apparently there was no record of my first visit or the so-called checkup. He also said that he hadn't given my information to the registry but he mentioned who might have. Also, when I mentioned the communication between him and my surgeon I got the same response as my surgeon. Now these are two people who, based on age, have been in the business for a lot of years and I would think would have encountered this before and so should know whether they could share the information or not. In any case, he said he would check with the other doctor and get back to me. Of course, being the medical system, he never did. He just LIED. It would have been interesting to find out what they were hiding. I walked out of his office in absolute disgust, AGAIN.

I also wrote letters to the hospital and anyone else involved in my health care, requesting copies of my files. And I wrote to the appropriate organizations with questions (this included treatment in the new province). I did not receive a response to several letters, so I mailed another copy, after a few more months and no answer, I sent the letters by registered mail. I got answers. Now it is possible that ONE letter got overlooked but when it happens to several letters and to different people/organizations, in the same business, it begins to look like a tactic.

Some answers I received to my questions made sense in relation to my direct health care. Others did not (I do not include those mentioned in other posts). These are some of the non-answers from William Findlay, Michele Stanton and John Garratt:

1. What are your living arrangements? They said that they want to know if someone will be at home when you get out of surgery. So, why don't they ask “will someone be at home to care for you when you leave the hospital”? You may be living with someone but that doesn't mean that, for a variety of reasons, they will be there when you get home. You may live alone but that does not mean you will not have someone at home when you leave the hospital? The non-answer I got from Findlay was “yes, that is a broad question”, which means they will continue to ask the questions for reasons they refuse to state.

2. I asked who sent my information to the registry? I was told it was nobody specific; it's just entered from a variety of sources at the hospital. And researchers have access to this information. My surgeon said researchers would only have access if I went for further treatment which I didn't. The “d” said they were only counting a number. Now, I am being told that the registry staff and “researchers” have access to my information (no limits mentioned). You just can't get an honest answer from these disgusting “people”.

I asked William Findlay how much of my information was put in the registry. He refused to answer and referred me to the organization that owns the agency that has the registry. That organization refused to answer my question. I sent letters again to the organization and to Findlay insisting on an answer since it was the hospital sharing my information. Findlay's secretary said, in essence, that they refused to answer the question. I got no response from the organization. I sent a letter to the agency and they refused to answer my questions.

I have to assume that all my information/body parts is being shared/traded/bartered with all their unsavoury friends (the only kind who steal from the vulnerable/sick people) until I hear otherwise and, so far, no one will tell me; I just get the run-around. Obviously, these vultures have something truly horrendous and very evil to hide.

3. I asked if my DNA was shared with researchers and I provided my care card number so they could look at my file. All I got was a non-answer that researchers may access the registry. So, I can only assume that researchers have access to my DNA for their use. Just think they could clone me (like they have done to sheep, etc.) and then throw darts at me and otherwise torture me. Anything is possible until the truth is known.

4. I asked if researchers, biotech companies, etc. are allowed to patent my DNA. Again they had my care card number to check my file. Again, I just got the non-answer “This is very uncommon. Should you wish to have your DNA patented you should contact your family doctor about that”. I guess he thought that was pretty funny. So, although I gave him my personal health number (PHN) he could not/would not tell me if my DNA was, or could be, patented without my knowledge/consent. So I can only assume that “researchers” can do whatever they want with my DNA.

5. I was also told that when I was admitted to the hospital I signed an admission form basically giving them permission to do whatever they want. I checked my copy of forms from the hospital and did not find an admission form. I asked William Findlay, in two separate letters, to send me a copy of the signed admission form. The question was continually ignored and I have not received a copy of the form so I have to assume that it does not exist. But, if it did exist it would only have been manufactured consent versus real consent. Real consent is explaining exactly how they want to use information, especially in ways that are not directly connected with my specific care, with whom they want to share the information and requesting my consent (it implies respect for the patient). Manufactured consent implies contempt for the patient -- Give us everything we want or die, we don't care, we are the medical business.

Update: I found a consent form in with the copies from my surgeon. When asked to sign the form I said that I didn't agree with some of the “requests”. I was told to just stroke out anything I didn't like, which I did. I don't know if this is the hospital consent form but I suspect it is. It may be why they refuse to send me a copy because I stroked out everything that was not directly related to my surgery, such as no sharing of information or body parts, etc. But they probably just stole the information/body parts anyways.

William Findlay said that the confidentiality and security of my information was protected under the privacy act. Isn't that disgusting. My information is protected under the privacy act. Let's see, oh yes, the auditor general and the privacy commissioner have found, on several occasions, that the privacy act has not been implemented, much less enforced in the medical business. They found that our information was/is being shared with every low-life. But my information is protected under the privacy act. How? Oh yes, and when the medical business is caught illegally sharing patient information NOTHING happens. The management is not sued, fired or held accountable in any way. They just promise to change things, until they get caught again. And then they just make the same lying promise. But my information is protected under the privacy act. The privacy act was meant to be, and is, just words on paper to be used to misdirect and con the public. But my information is protected under the privacy act. What a vile farce.

One medical person, when asked for specific information, about who my information was being shared with, told me, essentially, that if I didn't like his (general) information I could contact the privacy commissioner. I contacted the privacy commissioner who told me that such requests were outside their mandate. But that's what they do, run you in circles.

I had to laugh at the arrogance/narcissism of one medical person who said that I had his assurance that my information was protected. Obviously, he was still under the illusion that the word of someone in the medical business had value, that he could be trusted. I wish that were true but it isn't.

As for that registry, well, I tell people I wouldn't give that organization my spit. But then they have probably STOLEN that too.

I received a letter from the staff of a doctor telling me that the doctor would like me to phone as the doctor had something to say to me. I asked that the information be sent in a letter. I never heard from the doctor/staff again.

If I could trust the medical/government business I wouldn't have to ask the questions. But they have proven they are not trustworthy. And, if they were trustworthy, I would have gotten honest, complete answers, not non-answers, run-arounds or just blatant LIES.

So, now they have all this information on me, the truth and the lies. It will be shared with every scumbag because, in my opinion, that's the only type that would access a patient's information without their knowledge and/or their real consent. Collecting information “anonymously” has been proven too many times to be another lie.

Again, I state, I am not against research, if done with respect. I am against stealing people's information because only unethical, immoral fiends would do this. If you can't ask for information honestly, if you refuse to state who is using this information and for what purpose, if you have to hide in the shadows, in the gutters, then you must be doing something corrupt, vile and contemptible.

From the Open Society Justice Initiative, printed by the Office of the BC Information and Privacy Commissioner, Right to Know Week, September 28^th to October 5^th, 2007,:

10 Principles that form the core of the right to know:

1. Access to information is a right of everyone.

2. Access is the rule – secrecy is the exception!

3. The right applies to all public bodies.

4. Making requests should be simple, speedy, and free.

5. Officials have a duty to assist requestors.

6. Refusals must be justified.

7. The public interest takes precedence over secrecy.

8. Everyone has the right to appeal an adverse decision.

9. Public bodies should proactively publish core information.

10. The right should be guaranteed by an independent body.

Just words on paper. Sounds good but not worth a damn because the medical/government business will not implement it. But the privacy commissioner's office likes to print it because it makes them look like they care. Just propaganda by the government.

Simply put, privacy refers to an individual's right to remain anonymous or control who, how, when, and where information that is used to identify them is managed. (source unknown). And we have a RIGHT to privacy, this is our information not theirs but these people flip their middle finger at our RIGHTS.

I still have to see medical “people” periodically, whether for healthcare or outside the medical business. But I don't have to like them, I certainly don't respect or trust them. I look at these cannibalistic cowards who feed off the patients, whether it's a pharmacist/technician/researcher/physician, etc. (with one or two individual exceptions) with the same disgust and contempt that they have for the patients. The difference is -- I don't mask it.

February 22, 2016

A BIT ABOUT MY HEALTH STORY

Years ago, before I started raising awareness outside of St. Paul's, I went to a doctor for a health problem. The doctor wanted me to become part of a “study”. I was told that some researchers were being given access to patients records in return for providing services to the medical system (sold/traded/bartered). There would be a table of researchers, from different disciplines, asking questions. I asked what kind of questions. The doctor provided me with a outline of some of the questions. They wanted to know EVERYTHING, including all intimate information. I was shocked to say the least. It really was a case of taking a sledgehammer to a finishing nail so I certainly didn't feel that this “research” was for my benefit. And, according to comments from the doctor, I was certainly not the first patient that the doctor had directed, or tried to direct, to this group.

I asked this doctor about privacy. I was told not to ask about privacy or I would be listed as being “paranoid”. There's that word again. I felt, under the circumstances, that it was a very reasonable question. But, if you want to shut people up, or keep them from thinking along certain lines, or keep them from asking uncomfortable questions, just call them paranoid. It felt like intimidation, or blackmail, to me. I said no. And, knowing what I know today, I am sooooo glad I did. But at least, in this case, they had to ask and I had the option to say no. Of course, the politicians had already given them permission to steal whatever information was in the system but for any additional information they needed my cooperation.

My doctor said that we would discuss it again. I had said NO but gawd forbid that it should be respected. I didn't go back to this doctor for a variety of reasons, including not wanting to be harassed or coerced and not being respected.

I consider it unethical to try to manipulate a patient into becoming a lab rat by telling them it's for their benefit, when in fact it's for the benefit of the “researchers” and whatever company/organization they work for. I don't recall being told what organization this group was with, the purpose of the research or how the information would be used. Do doctors get kick-backs or brownie points or some other benefit for every patient they direct to the “researchers”. As for my medical issue, I eventually figured out what was causing it, fixed it; problem solved and without a doctor.

I noticed, over the years, that every time I went to a new doctor, in whatever discipline (medical, dentist, optometrist, massage, etc.) I was asked my occupation. It was usually asked as if it were just “conversation”. But when I kept getting asked the same question I realized that they were, in fact, collecting information. Apparently, they just didn't want me to know it would be entered into their records (to be shared with all the miscreants). I also came to believe that medical people don't have just general “conversations”. All questions, and even some statements, are about collecting information. Again, I consider it unethical to collect information under the guise of “general conversation”. Now I have a little fun with it. I decide what I want to be that day - a pilot, an archeologist, a retail clerk …... and do the same with other questions.

In 2013 I became ill. I didn't know it immediately but according to a doctor, I got sick around B.C. election time. What a coincidence. I had to go to a surgeon. This surgeon started asking me a lot of questions which didn't seem to have anything to do with my surgery. So I asked and all I was told was that it had to do with my treatment. I still didn't see the connection so I asked specifically how one related to the other. Instead of answering the question I was told that the surgeon had only so much time for me and if I was was going to ask questions right from the beginning, well..... Then the surgeon changed tactics and said it's about trust and if I didn't trust the surgeon then I should find another surgeon. So, either I “trusted” the doctor and did whatever I was told without question (be submissive/subservient, crawl), or I would be denied health care by this doctor. The fact that she was refusing to answer a simple question didn't instill trust. In fact, it suggested that she was lying and was, in fact, collecting information that was not directly connected to my surgery.

I don't believe that the majority of questions had anything to do with my health but, in fact, was information gathering for their vile friends, the scientists, the researchers, the suppliers, the marketers and gawd knows who else. Again, it becomes a case of collecting information under false pretenses which I consider immoral and unethical. If it was moral and ethical they wouldn't have to lie about it and hide what they were really doing, they would just answer the question. So what are they doing that is so heinous that they have to lie about it?

Anyways, I needed surgery and soon (I was sick and vulnerable) so I answered the questions but not always truthfully. That pretty much destroys the value of the information. After I left the surgeon's office and had time to think I decided that I didn't want anything to do with this surgeon who refused to answer my questions even if it meant delaying needed surgery. How can one trust a surgeon who lies and won't answer questions. So I got a new surgeon and I'm soooo glad I'm did.

I was overall very pleased with this surgeon. But the surgeon was not perfect and again it was privacy issues. I wasn't asked all the questions as I had been previously but then I suspect that the surgeon got the information from the previous surgeon. But I was asked whether I worked outside the home. Again that question. I asked why the surgeon wanted to know. I was told it was to determine my availability. Well, if you want to know someone's availability you ask how available that person is. A person's availability is dependent on other factors/commitments besides work. So I believe the answer I was given to the question was a lie. But I answered the question because, quite honestly, I wondered if the real purpose was to decide on the quality of care I would receive; how valuable am I to “society”, more to the point, the turdits and their friends. If you don't know the reason for the question, and you are being lied to, anything is possible.

The next question was, of course, since I worked, my occupation. Again I asked what this had to do with my surgery. I was told that the hospital would want to know, which didn't really answer the question. I answered it but again not quite truthfully. They're lying to me so I didn't feel that I owed them the truth. I found out later that if the hospital wants to know anything they will ask (and they asked lots and lots of questions). They didn't ask this question. So why did the surgeon lie about the hospital wanting to know specifically my occupation. Again, I think this was information collecting for the gutter trash who feed off the vulnerable, the sick. As I left the surgeon's office he said to me “so are you available? (for tests and surgery)”. So, this confirmed that asking about my work was not about “availability”.

Also, my primary doctor had told me that a test had not yet come back. I asked which test and the first time I asked I was given an answer that was incomprehensible to me. So, on the next visit I asked again and I was told that a sample of my DNA had been taken and what it was being tested for. Before every test I asked what was being tested and I read the form I had to give to the testers; nowhere did I see DNA. I told my surgeon about this test and the surgeon said that they never do that. So, I went back to my primary doctor and asked “Was my DNA taken and tested for....”. The doctor kept giving a non-answer so I had to repeat the question several times. Eventually the doctor said “I don't know”. This doctor is suppose to have a record of all tests. Was the surgeon telling the truth? Which doctor was lying or were both lying? Again, you just can't get a straight answer from these people. What are they hiding?

Did they take my DNA? Is my DNA being stored in a DNA warehouse, like they do with newborns, shared with all sorts of “people” and organizations (the US military love collecting other people's DNA). I don't know and I should have the right to know.

While going through tests and the actual visit to the hospital, this was an issue that kept reoccurring – collecting information not needed for my surgery. For example, the hospital wanted to know my marital status. Why? What did this have to do with my surgery? They also don't want you to have the questions beforehand. It would appear that they don't want you to have time to think about the questions, or they have some other motive. For example, they had a 4 page questionnaire, even before I got to the hospital, and when I asked them to fax or email me a copy of the questions, they refused. The only way I could get a copy was for me to go to the hospital and ask if someone would print it out (if someone would, in fact, do it). But there wasn't time because my surgery was the next day and they needed the answers. I think of that as blackmail – give us the information now or your surgery will be cancelled.

Another example was the day I went for surgery I was at one location (I got sent to many) and asked to fill out two forms. I filled out one and, after reviewing the second, asked the purpose of the questions. I was told not to fill it out if I didn't want to. So why would they give it to me if they don't need it and why not state, when it is given to me, that it is optional? Anyways, shortly after that I was laying on a gurney, with a tube in me and a medical person comes over and says they lost the form I filled out (I believe it was the form I filled out, not the other one) and she was going to ask the questions again. I told her that I had a copy in the locker which was directly across from us, only a few arms length away. But no she insisted on asking the questions. So:

1. Did they lose my personal, confidential information in about 10 minutes?

2. Was she lying?

3. Or both?

I suspect it was the second, or possibly the third answer. But these people expect trust and respect from you when all they do is lie. Strange.

I also noticed as I went through the system that I would sometimes have the same questions asked more than once. For example, after a test, one medical person sat down beside me, as if she was my best friend (in fact, she was anything but), and asked a question that she had asked earlier. I learned during my time in front of St. Paul's that “pretending to be your friend” is a tactic used to gain information from people who you think don't want to provide the information; it's manipulative. So, I learned to lie consistently on some questions or I changed my answer each time they asked on other questions. I had no respect for these bastards who were lying to and conning me, who didn't have the ethics or morals to state the real reason they were collecting this information. I also started taping everything. You may even want to take a camera, if possible, to protect yourself.

I also strongly suggest that you take someone with you when you go through the medical system. This person should be with you at all times, even, if it were possible, in surgery. Otherwise you may find that you are asked if someone, a male, can watch a procedure. You may say NO. The person asking (a female) and the male may go off and have a little talk. Then, when you are in the middle of the procedure and half-naked, you may look up and see the male peeking around the curtain. You may realize that the male has been standing on the other side of the curtain, listening, waiting for the “opportune” moment, for him. What do you call someone who would do this? Certainly, you would not call it a man because a real man would never do something like that. Do you call it a pervert, a sicko, a voyeur, human garbage. You may be going through an extraordinarily difficult time and then have to emotionally deal with the indignity, the humiliation of a pervert(s). And if he was told to do it then do you have two perverts, two pieces of human garbage? And just think what someone(s) like this is learning and will do to the next patient. These people do not respect the word NO. If you say NO they will just take it anyway, by whatever means, and they don't care how far into hell they have to sink to do it. And who spawns and raises such sickos?
A male said to me “I don't care about you. You don't DO anything”. Well, actually I DO something. But why let the truth get in the way of a convenient lie. Who else do they “not care about”. It doesn't matter what a person does or does not DO because all people SHOULD be treated the same in the medical system -- with dignity and respect.

Also, when you are going through the system you may have two females strap you into a machine, half-naked, so you can't move. Then they may take off (coffee break). A bit later you may hear someone moving around behind you and ask who it is and a male may answer. You may never see him, any part of him, or what he was doing behind you, or even if there was more than one male. As far as you know it's just him and you and you are half-naked and can't move. Would something like this be considered a “perk” of the job?

You may be going through hell, vulnerable and sick but the more vulnerable you are the easier it is to be degraded, devalued, and dehumanized by these cowards in the medical business.

Aren't there rules against this? But, of course, if there are they would just be words on paper, meaningless. And these people insist on trust and respect. But gawd forbid that a patient should delay the bastards coffee break; that appeared more important than the dignity and emotional well-being of a patient.

You should be able to feel safe in the medical system but you are not safe, especially a woman.

Perhaps I should feel compassion for people who seem to be depraved but I'm not there yet.

Right now, I hope there is a special place in hell for “people” like this.

And just think, one or more of these "people" may “take care” of you if you get sick.

I was in recovery after surgery when a nurse said to me: “your healthy, how did you get this illness”, as if I had brought it on myself (no one knows what causes my illness or so they say). Was she:

1. grossly insensitive

2. Collecting information

3. Both

As I said before, I don't believe these people ask questions unless they are collecting information. So, there I was, still coming out of anesthetic, susceptible, vulnerable. What a perfect time to take advantage of someone.

A week or so after surgery I had to go to the surgeon for a checkup. It was at this visit that I found out that my medical information had gone into a registry. I had not been asked if I wanted my information in this registry and only told after the fact. I was told that no one, other than the next doctor I had to see, would access my information without my written consent (another LIE). I found out later that I would be “tracked”. So, I was now in a registry, being treated like I was a criminal, like I was a paedophile, because I got sick with an illness that affects no one but me.

After noticing the t-shirt I had on the surgeon mentioned that his daughter had visited that country. I got the impression that I was expected to respond with some comment about my family – I didn't. This question was then asked by the next doctor.

So, I had to go see another doctor (I came up with a number of names for him, the politest was, well, I'll call him the “d”). On appointment day I couldn't find this doctor's address so I went to my primary doctor and the person at the desk, not a doctor, went into my medical files to find out who I had been referred to. I mention this because I had been told by the office manager that no one had access to my information except the doctors. So, more lies.

I went to the “d”s office, let them know at the desk that I was there and sat and waited. Half an hour later one of the desk people came and asked me if I was waiting for someone. I waited for a moment while a number of sarcastic remarks ran through my head and then said “yes”. I went into the doctor's office and he explained that he had been delayed because he couldn't get his computer to work, then he couldn't get his printer to work so I gather that he borrowed a laptop. The first question he asked was my marital status. Why? Did he want to date me? No? Well, I couldn't see what my marital status had to do with my health care. So, I told him it was irrelevant and he said it was relevant but didn't say why. Next he asked if I had family. Why? Did they want to know how available my body parts were before I was dead? I told him it was irrelevant and he said it was relevant but again didn't say why.

When he accessed my information in the registry I asked who else had access. He said researchers but they only want to count a number. Well, if all they want is to count a number then there isn't a need for all my information to be in this registry. And this answer was different from my surgeon's; and, as you can read in the next post I will get a different answer from the reprobates running the registry. You just can't get an honest, straight answer from these disgusting, reprehensible excuses for human beings.

He recommended further treatment but he only gave me the most minimal of information. In my opinion, only enough information to manipulate me into doing what he wanted. I asked him where he got his information. Basically I wanted to know his sources because this guy was not instilling in me any sense of confidence that he knew what he was doing. He shrugged and looked at the computer; I certainly didn't get the impression that he gave a damn. He did not mention a lot of things, including side affects of treatment. I had to ask and then he had to think for a few minutes before he came up with one obvious one. Apparently, I spent more time researching than him so I knew there were other side effects. Anyways, I said that I would think about further treatment. He decided at the point that he needed to do a checkup. Considering all the tests I had just been through, I couldn't figure out why, but okay. So he reaches for the equipment to check my blood pressure and it doesn't work (or so he said). So he decides to check my heart. I remember thinking “yes, I do have one” because, by this point, I came believe that that was all he could figure out. He placed the stethoscope in the general vicinity of my heart for a fraction of a second so I'm not sure he even determined that much. I walked out of the “d”s office in complete disgust. Health care should be a cooperation between doctor and patient, with the patient receiving all information necessary to make an informed decision about what the patient wants done to them – not a power play, not manipulation, by the medical "people".

Shortly after my operation I was in front of St. Paul's. I don't think I was expected to be there again (presumably, there's more than one way to make a person disappear). Interestingly, just after I arrived a young male, riding a bike, told me, as he went by, that he had an illness (almost identical to mine, what a coincidence). And he said “I give them (the medical people) everything they want or die”. Another expression of our non-democracy. This person had ridden by before my illness, throwing out negative comments, and was patted on the back by someone from the hospital.

When I moved I was told that the medical information is not transferred from one province to another. In the new province I moved to I had to go for tests. The technician asked in what province I had my operation, I told her since I believed they already had the information (in hindsight I shouldn't have given the information). Then she asked which hospital. I refused to say. After all what difference does it make unless you are planning on stealing my information.

A doctor asked for a copy of my medical records so “they” could “track me”. I refused. You should see the caring, compassionate mask drop when they don't get what they want. These bastards stole my information/body parts, they have consistently lied, they refused to say how much of my information they stole, who they would share it with and how it would be used (see next post “Collecting Information Or Not – My Story), but they wanted my co-operation. Their level of narcissism is unbelievable.

I went to a different doctor and she asked a question. She was shocked at my answer. I don't know if it was the answer that shocked her or if she realized I was lying. It didn't matter. She was just “information collecting”. So, I just smiled internally and thought “touche, bastard”. What comes around goes around.

Did some of the people in the medical system do what I pay them to do? Yes, and the occasional one even caringly. But it's like a priest that holds the hand of a dying person (at the patient's request) or preaches to people about morals, ethics, and integrity and then says, oh excuse me while I go and rape one of your children or cover for those who do – besides being hypocritical, one does not absolve the other. Or the mafia who kills someone one day and then gives to charity -- one does not absolve the other. You are still something that harms the vulnerable, the sick, the children even it's by doing nothing but covering for others.

I'm angry because I wanted to trust these people, I wanted to respect these people, I wanted to feel safe when I went for healthcare and instead I got the opposite. So, now when I look into the face of these “people”, whether I am seeing them for healthcare or in a pharmacy or in the streets or wherever, I feel contempt, revulsion, and total disgust.

February 16, 2016

FOLLOW THE MONEY

Where does the money go when you contribute to research? Do we pay for the research and then pharmaceutical companies make billions in profits selling it back to us so we pay two or more times.

If you don't care about your privacy, maybe you care about your money. You pay for health care, your information is then sold/traded/bartered, the politicians then give researchers taxpayer money to do research, and people donate money for research. The research is done and then the people pay again for the resulting pharmaceuticals or patent testing. How many times have you paid for the pharmaceuticals and tests you may, or may not, use?

I have read the websites, and reviewed the financial statements of several health foundations/societies/agencies. They put on the website some information which is useful to people with that particular illness. But I also noticed that 23%-53% of the money raised went to fundraising costs, even with volunteers. There are no details as to how the money is actually spent. Does it all go primarily to one fundraiser, are there connections to the foundation/society/agency personnel, or are the costs spread among a lot of different people/companies, and are the costs justified? Who are the fundraising people/companies and are they affiliated with the politicians. The fundraising costs amount, in some cases, in just one society/foundation to hundreds of thousands of dollars, annually.

The websites say that they give x dollars to researchers and sometimes they name the researchers or research being done. But they don't account for the money or the research. Is the money just to pay wages and, if so, what are the wages of the researchers? Do the researchers have funding from somewhere else? Could they be double- or triple-dipping? How else is the money being spent and is it being spent wisely? We don't know because there is no information.

The websites also don't tell you what happens with the research. Was the money spent on research that was successful? How much did it cost to find a cure or something that aids a sick person? Again, was this money spent wisely? What happened to the successful research – was it then patented? If so, who gets the money and how much does the patient/taxpayers have to pay, again, for the results of this research? Even if the research was unsuccessful, was the money spent wisely? Could the money have been better spent aiding sick people in some other way? The BC Cancer Agency website says that they have “set up the Technology Development Office to champion its intellectual property management (presumably that means “market” its, not the people's, intellectual property) and commercialization. They also say that they “partner closely with research institutions, non-profit organizations, and industry around the world to help drive new discoveries forward quickly" and they have a "duty to act on behalf of our patients and the general public to ensure that a culture of accountability is fostered". Are yet they won't say specifically who they are sharing our information with and under what circumstances so where does the accountability come or is it just lies? The Liver Foundation provides minimal financial information but does say you can contact them to get the details. I contacted them, several times, and never got a response.

I am upfront about the fact that I don't contribute to these organizations (at least not willingly). When they provide me with enough information that I know my money is being wisely used for the benefit of sick people, and not to line someone's pocket, I will contribute. Needless to say, I would also want assurance that the research wasn't using stolen information and being given to pharmaceutical/research organizations with a unethical/criminal history (4, 5, 6).

I heard, some time ago, that there is medical research that would benefit patients but that it is not being done because it can't be patented. I doubt that things have changed. Gawd forbid that we would pay for research and then have a medical benefit that would cost the patients/taxpayers nothing or next to nothing more.

If you read post “Patenting DNA”, you will see that the public “invests” their information (mostly without their consent or knowledge), monetarily fund the research and then research hospitals/universities patent/sell what they discover. They are the owners, not the citizens. The hospitals/universities then charge the citizens for the test/drug, etc. and keep the money to use as they see fit. The citizens do not have a say, they are not even allowed to know how much money is being made off the citizens investment as it has now become “confidential”.(1) The information, and the money, has gone from being ours, to being theirs. (2) Interesting how that happens.

Is this not exploitation of the sick? No wonder “Many (billionaires) have gotten rich from interests in .....the pharmaceutical and health-care industry”. (3) Is research just a wealth transfer project where wealth of information and money is transferred from the many to the few? Oh, please let me donate more. The wealthy suffer so much.-). Are the foundations/charities primarily fronts for the pharmaceutical companies? We don't know.

If we are providing the body parts and information and paying for the research, are we getting the research WE want or just the research that will line the pockets of the multinationals?

When I was in front of St. Paul's I had a discussion with someone on this topic. This person said the pharmaceutical/research companies need the money for marketing. Why? If this is a necessary medical product why do you need to spend a lot of money advertising or running around convincing people to buy as much as possible? If this is just some cosmetic product or duplicate with a new flavour, then why is our money being invested on this kind of research?

Isn't it time we knew where our information, our body parts and our money was going? But that would require transparency and accountability, something the medical business, in all forms, has an aversion to. I wonder why?

And, Isn't it time we claimed ownership of our investment?

1. Breast cancer gene patents: the Canadian story – Kelly Crowe, 18 Jul 2013, CBC News

2. SickKids Hospital dragged into U.S. Breast cancer gene suit – Kelly Crowe, 18 Jul 2013, CBC News

3. Wealth gap: Canada's middle class is not immune to trends of income concentration – 20 Jan. 2015, The Globe and Mail

4. Pharmaceutical Corruption Media Articles, www.wanttoknow.info/pharmaceuticalcorruptionmediaarticles

5. Ethics in pharmaceutical sales, wikipedia

6. 7 Shameful Examples of Big Pharma Fraud, Vactruth.com

February 15, 2016

GENETIC TESTS

So, what happens to the genetic tests that are done on you, with or without your knowledge/permission [see future posts “My Story” and “Information Collected (or Not)].

Besides going to researchers (and probably the pharmaceutical companies they are associated with), it may go to insurance companies, employers, banks, marketing companies and probably a whole lot of other “people”. And this is just the start.

“Canada's privacy watchdog is urging insurance companies and others to stop asking for access to the results of existing genetic tests.”

Federal Privacy Commissioner Daniel Therrien says it is becoming more of a challenge to protect people's genetic privacy with recent advances in science and technology.

‘We are calling on the industry to refrain from asking for existing test results to assess insurance risk until the industry can clearly show that these tests are necessary and effective in assessing risk.’ Therrien said in a statement Thursday.

There are now hundreds of tests to help spot genes known to increase a person's risk of certain medical conditions.

But some people may decline tests for fear a positive result may mean they could face discrimination from insurance companies or their employers.. (1)

There are currently no laws in Canada that specifically prohibit genetic discrimination.”

Declining the tests, of course, assumes the people are given an option and the tests are not just done, without the people's knowledge/real consent, from blood and other samples collected by the medical business.

And what will happen when they “open the door to an era of personalized medicine,” where treatments are tailored to specific genetic characteristics. (2) How many other people/organizations will have access to our very, very personal information such as marketers, suppliers, banks, insurance companies, employers, other countries (who many disallow you into their country), etc.?

How much discrimination will the people face based on our specific genetic characteristics? Will they be denied having children? Will they be denied certain health care, jobs, etc. Will they be targeted for experimentation (with or without their knowledge)? And the list of possible discrimination goes on...

We have no idea what's going on and how it will affect us. It seems like a free-for-all with our information/body parts. And once it's out there, you don't get it back. And we have no idea what's going on in the medical/government business.

The turdits, and their friends in the medical/government business, won't/can't protect our information and, instead, share it with all the ghouls even when there are laws prohibiting it (see all past/future posts) and, of course, in cases like genetic tests they don't even bother with laws. That would be working in the interests of the people and gawd forbid that should happen.

1. Insurers asked to stop seeking access to results of genetic tests – The Canadian Press, 11 July 2014, Metro

2. Hospital launches legal challenge to patents on genes – Andre Picard, 4 Nov 2014, The Globe and Mail

February 8, 2016

ANOTHER MAJOR PRIVACY BREACH IN B.C.

Since 2010, a total of 4,420 government privacy breaches have been reported to the Office of the Chief Information Officer in B.C. That's almost a thousand “breaches” a year. (1) And, it only includes those reported. The privacy commissioner's office has “looked into some 500 privacy breaches of one kind or another involving government and its agencies over the past five years”. (9) And again, it includes only those reported which are a very small fraction of the total “breaches” because government agencies are not required to report “breaches”.

Now, more information has been “lost” by the B.C. government. This time the education ministry “lost” “personal information for 3.4 million B.C. and Yukon students and B.C. teachers from 1986 and 2009. The hard drives included names, addresses, genders, birth dates and education identity numbers, teacher retirement plans, substance abuse information, mental health issues, psychological assessments, plus detailed family data, social, type of schooling, grade information, graduation status, financial aid data, and designations such as ESL and special needs, economic and education status of cancer victims and children in provincial foster care and health and behaviour issues for children in care. (1)(2)(5)(7) “It also included family troubles and police interventions......, letters from members of the public with specific complaints about teachers; particulars on some 1,000 cancer survivors who took part in a lengthy research trial”. (9) This information was NOT anonymous. All information could be connected to people's names. (8)

Why does the education ministry have information going back 30 years? The teacher retirement plans was a survey done in 2003 so the older information pertains to the children. Isn't there a time limit on how long the government can keep information on students and children in care. Oh right, this is the B.C. government that keeps all information on citizens for ever.

The hard drive was discovered missing in August 2015 but the hard drive “could have been missing for as long as five years”. (4) The ministry had been trying to track it down since early August and didn't notify the Technology Minister Amrik Virk until around September 11, 2015.

Again, the privacy commissioner's office listed numerous ways in which the education ministry failed to provide adequate security and provided recommendations to improve security. (1) This is the same list/recommendations as identified in previous “breaches” and, no doubt, it will be the same list/recommendations as identified in future “breaches”. I suspect the privacy commissioner's office keeps a copy of this list of inadequate security measures and recommendations that it just reprints for each new “breach' because nothing changes.

The Technology Minister Amrik Virk called the “breach” “low risk” because there is no indication of fraud and identity theft. (5) What a “convenient” statement. Apparently, the ministry has done comprehensive searches by up to 50 bureaucrats, and “they had looked in every box, in every desk, in every drawer, and they weren't able to find it” (6), but the ministry still considers the possibility of theft to be “low”. And, the warehouse was not equipped to secure information. (6) Plus, when the statement was made, the ministry had not examined the potential risk to individuals or notified them. (5) The use of the information by others may not be as obvious as identity theft. Personal information is very valuable these days. Based on what I've read, companies are building large personal information databases. This information can be used by the company and/or sold to marketers, insurance, banks, future employers, etc. so the people whose information went “missing” may never know that they lost a job, a bank loan, insurance and so on because of the information the companies were/are able to access. This “loss” of information could haunt these people for the rest of their lives.

And, as the privacy commissioner's office noted: the information could cause emotional hurt, humiliation or damage to reputation, if in the wrong hands. "I think it essential to emphasize that the affected individuals are some of the most vulnerable in our society. They include children in care, children in custody, children with special needs, and children with health conditions. These are all circumstances that can lead to stigmatization by society in general and instances of individual discrimination." (1)

The privacy commissioner's office “interviewed some 16 individuals, including current and former employees. But 'owing to the passage of time, the testimony was, understandably, often vague, incomplete or inconsistent.' Coupled with the lack of documentation — another common occurrence with this government — she was unable to place blame on any particular individuals”. (9) So, again, no one will be held accountable.

Education Minister Mike Bernier said: “We sincerely apologize for any inconvenience this incident may have caused people” (italics mine). Could you trivialize the matter more? My goodness, did the government drop someone's pen?

But just ask the B.C. government, including medical people, and they will tell you that your information is protected.

“The incident prompted the Government Communications and Public Engagement office to write a 16-page script of anticipated questions and suggested answers for politicians.” (1) So the hand puppets and toadies just regurgitate the scripted answers.

The scripted answers also state that the trend of reported “breaches” was increasing through 2014, but has since begun to decline. Other possibilities:

1. This is a scripted answer by government so is likely a lie. See post “Our Information is Not Protected – Part I” for example(s) of how government lies.

2. The government may just be covering up more “breaches” and not reporting them.

3. When you are “losing” information on millions of B.C. citizens at one time, what's left to “breach” that isn't already out there? Again, see post “Our Information is Not Protected – Part I” where the government “illegally shared” information on 4 to 5 million B.C. citizens.

And, of course, they promise everything will be fixed so citizen’s information is protected. Until the next time!! Because they lie!!

My question is: Is there any information left, on the people of B.C., held by the B.C. government, that hasn't been illegally shared or “lost”??

1. Education Ministry Chastised for Latest BC Data Breach - Bob Mackin, 29 JAN 2016, TheTyee.ca

2. Ministry of Education failed to protect personal information involving missing portable hard drive - Dissent, 28 JAN 2016, Office of Inadequate Security

3. Investigation Report F16-01, Ministry of Education, 28 JAN 2016, The Privacy Commissioner's office; CanLII Cite: 2015 BCIPC No. 65; Quicklaw Cite: [2015] B.C.I.P.C.D. No. 65

4. B.C. ministry broke rules, leading to data breach: Privacy commissioner - The Canadian Press, 28 JAN 2016, The Globe and Mail,

5. B.C. education data breach: government can't find unencrypted hard drive – 15 Sep 2015, CBC

6. B.C. Education Ministry Slammed For Losing Hard Drive With Students' Personal Info – Tamsyn Burgmann, 28 JAN 2016, The Canadian Press

7. B.C. ministry broke rules, leading to data breach: Privacy commissioner – The Canadian Press, 28 JAN 2016, The Globe and Mail

8. Largest data breach in B.C. could have been “completely preventable': watchdog report – Paula Baker, 28 JAN 2016, Global News (this is actually the 2^nd largest see , see post “Our Information is Not Protected – Part I” where the government “illegally shared” information on 4 to 5 million B.C. citizens.

9. Privacy breach a failure of 'executive leadership,' watchdog says – Vaughn Palmer, 28 JAN 2016, Vancouver Sun (a paper I never bought)

10. B.C. student data breach could affect more than 3 million people – Amy Judd, 22 SEP 2015, Global News

February 4, 2016

USING/PATENTING OUR DNA

DNA

DNA is the molecule that is the hereditary material in all living cells.

Genes are made of DNA, and so is the genome itself. A gene consists of enough DNA to code for one protein, and a genome is simply the sum total of an organism's DNA.

In a very real sense, DNA is information. (1) Genes are passed on from parent to child and are an important part of what decides how children look and act (their biological properties). (11)

DNA is part of our bodies. Medical staff/researchers have to have our blood, our skin, a strand of our hair or some other part of our body to “see” the DNA.

“Canada is one of the only jurisdictions in the Western world that still allows gene patenting”. “Last year, the U.S. Supreme Court ruled that genes can no longer be patented.” (2) CHEO (Children's Hospital of Eastern Ontario) is going to court to try to have some gene patents struck down. In this case, the patents are for “genes associated with a heart condition called long QT syndrome”. “The patents being challenged by CHEO are held by the University of Utah but were filed in Canada.” (2) They hope that this will set a precedent that will have all other genetic patents struck down. I hope they are successful.

“The U.S. and Europe have developed gene patent policies outlining what types of genetic information can be patented”. The European Union states that: 'The human body, at the various stages of its formation and development, and the simple discovery of one of its elements, including the sequence or partial sequence of a gene, cannot constitute patentable inventions,'” (6). In other words, you can't patent a tree, or its root, because you discovered it. You did not invent it.

“Biotech companies want to patent genes so they can profit from testing of those genes.” Even “when patents are struck down....a company can still market tests but cannot do so exclusively, so the price drops significantly”. (2) It is, as usual, a case of follow the money.

But, CHEO is a “leader in genetic research”. They want your genetic information to be available to researchers and clinicians. They believe that “restricting access to genetic information by researchers and clinicians undermines patient care and is morally and legally untenable”. Alex Munter, CEO of CHEO said that striking down the law will “open the door to an era of personalized medicine,” where treatments are tailored to specific genetic characteristics. “Dr. Gail Graham, chief of genetics at CHEO”, said researchers at the hospital have not and will not patent any genes they discover”. (2) My question is: do they ask the patient for permission to use their genes for research, to keep those genes in their DNA warehouse, to share that DNA? Is this a case of genuinely caring about the rights of the patient? Or, is this a case of two rival gangs fighting over turf, that turf being our bodies, our information? Will our information just go to different researchers, without our real consent? It is even more concerning when you get into personalized medicine tailored to specific genetic characteristics. I find it “morally and legally untenable” that researchers, clinicians, etc. can take and use our medical information/body parts without our REAL consent. (2) There is a dark side to how this information can be used so we need to know if and how that can be prevented. Again we need transparency and accountability, which is not happening.

Problems with Patenting DNA:

A patent gives a company ownership of a particular area of the human genome. (3):

(a) “Lawyer Rebecca Gilsenan says there are many dangers to having a monopoly on this patent.

'There's a philosophical and ethical issue about commercializing the human body and its genetic material,' she said.” (5)

(b) “When a lab does a panel that features information on larger parts of the genome – that information cannot be communicated to patients, again because of the patent. 'We simply cannot accept a situation where a patent prevents us from diagnosing and treating a sick child,” Dr. Graham said.” (2) I think this means that if they accidentally discover that you have an illness, they can't tell you about it unless they pay the patent company to test for the illness.

(c) If a person needs a genetic test, for example, for heart related problems, it must go the U.S., even if a Canadian lab is capable of doing the test. This increases cost, and reduces the number of genetic tests and possibly puts people's lives at risk. (6) And once our information gets into the U.S. we have no control over it. Then again, we, the people, have no control over our own personal information in Canada.

So far, tests for BRCA1 and BRCA2 (breast cancer genetic mutations) are being conducted in Canada and the patent holder has not taken action. But that is not the case with all genetic patents. (2)

(c) If a person is tested for the breast cancer genetic mutations by Myriad Genetics, the person cannot get a second opinion because Myriad Genetics does not allow second opinions. (5)

(d) Other companies are not allowed to develop other tests, that may be better and cheaper because that would infringe on patents. (5)

(e) Myriad Genetics (a U.S. company), working with Canadian researchers at Sick Children's Hospital and McGill and Laval universities (publicly funded institutions), discovered “BRCA1 and BRCA2 human breast cancer susceptibility genes”, from some people's DNA. They patented the genes and created a test to identify these genes. So, where did they get the DNA? Does a U.S. company, a foreign company, have copies of our genes, (2) and is that material (our DNA) being held outside Canada? Quite frankly, I don't want any company to have a copy of my DNA held in some warehouse. But I do know that there are occasions when this is necessary. If you are tested for an illness, they may need to keep a copy of the DNA and the test on file in case you have future health problems or court cases. But, I believe, that information should be kept just for that purpose and only for a limited period of time. If they want my DNA, my body part, for any other purpose they should have to get my written permission. And I mean real consent, not manufactured consent. And I would, of course, insist on knowing (with proof) how the information would be used and who would have access to that information (see next post “Genetic Tests”). Plus, I would want a say in how long they keep my DNA on file. But then again, we live in a illusionary democracy (see post “Why I Don't Vote – Part II), where I have no say in what happens even to my body parts/information.

CHEO's CEO Alex Munter said: "We hope to obtain guidance from Canada's Federal Court that will allow all provinces to approve genetic tests conducted by Canadian healthcare providers. Our patients deserve nothing less". (6) I believe patients deserve nothing less than to be treated with respect and asked for real consent before genetic tests are performed. And that real consent is based on being informed as to what tests are going to be done, by whom, for what purpose, how that information will be protected, will any of it be patentable and what do these people getting my information/body parts get out of it (wages, profits, royalties....). And this would need to be provided in writing so the patient can give their signed consent or not. Particularly as "Genetics is poised to make major advances” Dr. Gail Graham, chief of the genetics program at CHEO, said”. (6) These people in the medical/research business have proven they cannot be trusted so they must be held accountable with OUR VERY sensitive information. And especially because the BC government has already been in discussions to sell our information (and I suspect are already doing it). (7)

Myriad Genetics and HSC Research and Development Limited have filed a court case against Ambry Genetics, a “company seeking to offer a cheaper test for the breast cancer susceptibility genes”. "HSC Research and Development Limited," is a legal entity controlled by SickKids in Toronto. It acts as the hospital's licensing arm for the commercialization of intellectual property. (4)

“Luigi Palombi, an Australian lawyer and author of a book about the race to discover and patent the BRCA gene mutations, states: 'I think it is outrageous for any publicly funded research institution to be put in this situation.'”(4) It brings forward this whole issue of just how far publicly funded research and research institutions can collaborate with private industry. (3) It is all well and good for politicians to say that we need to encourage commercialization and we need to encourage public institutions to partner with commercial institutions.(3) But it is inevitable once they have come to this sort of arrangement with a commercial entity, and Myriad's modus operandi from the very beginning was, 'We are going to patent these genetic mutations because we want to make money out of it.' (4) Once you have publicly funded institutions getting into bed with these guys, well then that raises a whole series of other questions and issues," Palombi said."I think the Canadian public and tax payers have the right to question and find out how this happened, why and what it means for them."(4) I would like transparency and accountability on how our information is being used. I am not a lab rat, I am not fodder for cannibals to feed off, to commercialize. Or, at least, I don't want to be but I don't have a say in the matter; they just take want they want from my body when I am sick and vulnerable.

People, especially researchers and government, will tell you the value of anonymized research data. (10) And, I believe this is true, to a point. But, as we know from the post auditor general – PARIS report – 5/24/2010 and the BC health firings scandal, post dated 12/27/2015, our information is not anonymized and it is certainly not protected. In most cases, government/medical business had no idea who was downloading our information or with whom it was being shared (or so they say). In other cases, where the government/medical business knew who was accessing our information, the information was being shared illegally.

Another issue is that if you collect enough information on an individual, even if it is all anonymous or de-identified, you will be able to identify, or re-identify, the person. In some cases it is not difficult to identify the individual and, in other cases, it takes a great deal of work. But, as technology advances, identifying people from a collection of anonymous or de-identified information will become easier. (8,9)

If we, the citizens, are to benefit from any research/studies involving our body parts and our information, then we need to know the costs of sharing that information (and not just monetarily) and the benefits expected to be gained. So far, we have no idea how our body parts, and our information, are being used. I consider that a gross violation of my rights. In addition, isn't selling/trading/bartering our DNA, a part of our body, illegal? Isn't this the same as trafficking in body parts, an international crime? Or do you call it pimping when they are selling your body?

See blog “Newborn Blood Samples”, June 16, 2011 to read more about the dark side of DNA collecting.

Some other interesting information came to light:

(a) “two Canadian researchers were on the winning side in the race to discover the BRCA2 gene mutation back in 1995, and their research institutions share ownership of several U.S. patents with Myriad Genetics.” (4)

(b) these institutions receive royalties and ”That money is 'critical to these institutions, the majority of which are publicly funded research universities and a children's hospital, the Hospital for Sick Children located in Toronto, Canada,' the documents allege, adding that if SickKids and the universities lose royalties from the company's monopoly on the cancer gene tests, it will 'impact their ability to fund ongoing programs and new endeavors'.” (4) So how is it that when publicly funded institutions make a discovery, the patent is in the name of its licensing arm and all royalties go to the institution and not the government (on behalf of the people who paid for the research)? With a monopoly they can charge the people more for the tests, which the people paid to develop, and the money goes to the institution to use as they chose. So, the institutions are just milking the people.

I would like to think that CHEO is going to court for altruistic reasons, solely for the care of the patients but I doubt it. Look at the timing. For at least 20 years (3) the Canadian medical system has ignored DNA patenting. Now, just after all the bad publicity about privacy breaches (especially Ontario and B.C.), some medical people are attempting to do something that puts them in a good light. Is this mainly PR? Or, is it because genetics research has progressed to the point that it is very profitable? Now, as I said before, I hope CHEO wins. But will our information, including our DNA, be sold/traded/bartered with THEIR low-life friends. Maybe they should spend time explaining what they do with our information, with whom they share our information, how they are protecting our privacy, or, at least, being honest about how our privacy is not being protected and what they get out of it. But that wouldn't be in their interests.

IT'S YOUR DNA AND IT DOESN'T GET ANY MORE PERSONAL THAN THAT. (Michelle Salas)

Some other points of interest:

1. Police are now trying to collect DNA illegally (13). I wonder with whom that DNA would be shared. Oh that's right, we don't have the right to know.

2. “The courts may be the final barrier to protect Canadians from unfettered genetic experimentation as scientists abandon public interest research in favour of corporate funding and ambitious, cutting-edge science, lawyers heard yesterday.

The independent scientist who conducts research for the public good 'barely exists any more,' according to one leading expert on technology and public policy.

'They get up and talk as if they are neutral. But they almost always have some share in the company or some self-interested gain for their work,' said Philip Bereano, a professor from the University of Washington in Seattle.

Genetically modified foods and health care based on genetic research are being introduced into North America by stealth, with large companies using patent law as a weapon against farmers, consumers and patients, panel members said.

Billions of government dollars will be spent to modify genes.... “ (14)

3. Applied genetic research is emerging as the greatest single driver of global economic growth since the industrial revolution.... “If you are ignoring these trends, you're ignoring the biggest databases ever generated by mankind.” (15) So, exactly who is profiting from our bodies? And what are they doing to us?

4. Tartu, a pretty university town in northern Estonia, is about to become home to the world's largest genotype and phenotype bank. This bank's currency will be blood samples and DNA analysis.

In larger countries, it would be more difficult to enact the necessary legislation for such a project, he said, but “in a small country, we can explain it to the people and adopt the law in [a short] time, which we did. British Columbia didn't have a problem but, of course, they didn't explain it to the people; B.C. just enacted a law allowing them to take people's DNA, and anything else, when the people get healthcare, which happens to almost everyone at some time (and probably when they give blood).

“Start-ups and spin-offs will result in a new economic sector,” he said, “with lots of well-paid jobs in the high-tech sector: gene and biotechnology, bioinformatics, etc.

The foundation proposes to map genetic data of at least three-quarters of the 1.4 million people of Estonia.

Such projects have often run into criticism. What if sensitive information falls into the wrong hands? Could employers and insurers discriminate against people thought to be at genetic risk for disease?

Iceland's deCode genetics project is the most controversial of all. In a deal with European pharmaceutical company Hoffman Laroche, deCode has exclusive rights to all Icelanders' medical and genetic data, and any resulting intellectual property”. (16) (17)

5. 13. Conflict of interest - “...Just look at the conflict of interest statement in any pharmacogenomics journal today and you will find that the head of each of the major studies and a select group of investigators, funded by public tax payers money from NIH, and YOUR DNA, are going to make huge profits from royalties and huge salaries these physicians-researchers earn because they control proprietary samples that are otherwise hard to come by. Just by tying a SNP to a treatment outcome or diagnostic outcome, there are big profits in the healthcare business to be made; with no real innovation! Hence, one wonders about the real motivation underlying collection of blood samples with consent and especially without consent - a cure or a profit!” (12)

6. “The administration at UBC, where drug research money abounds and where the Dean of Medicine, incredibly, sits on the board of LifeSciences British Columbia, the main lobby group for BC's pharmaceutical industry, doesn't seem to be too worried about our pancreases". - Diabetes Mongering a dangerous deception – Alan Cassels, July 2013, Common Ground, pg. 13 And round and round the same people go, conflict of interest abounding.

7. “According to US consumer group Public Citizen, 'The pharmaceutical industry now tops not only the defense industry, but all other industries in the total amount of fraud payments for actions against the [US] federal government under the False Claims Act.'"

8. "Remember this: money has the ability to pollute even the most noble aspects of healthcare". - Decoding drug lobbyist rhetoric – Alan Cassels, May 2013, Common Ground, pg. 7

1. Genome News Network

2. Hospital launches legal challenge to patents on genes – Andre Picard, 4 Nov 2014, The Globe and Mail

3. Breast cancer gene patents: the Canadian story – Kelly Crowe, 18 Jul 2013, CBC News

4. Sick Kids Hospital dragged into U.S. Breast cancer gene suit – Kelly Crowe, 18 Jul 2013, CBC News

5. Legal fight over breast cancer gene begins – 08 Jun 2012, CBC News [no journalist name given]

6. Ontario hospital launches lawsuit against owners of gene patent – Marlene Leung, 3 Nov 2014, CBC News

7. At Time of Firings, Health Ministry Discussed Selling Patient Data – Andrew MacLeod – 20 Mar 2015, TheTyee.ca

8. No silver bullet: De-identification still doesn't work - Arind Narayanan & Edward W. Felten, July 9, 2014, http://randomwalker.info/publications/no-silver-bullet-de-indentification.pdf 9. Identifying Participants in the Personal Genome Project by Name – http://dataprivacylab.org/projects/pgp/index.html 10. Tragedy of the Data Commons. Jane Yakowitz, Harvard Journal of Law & Technology, Volume 25, Number 1 Fall 2011 11. Gene. Wikipedia 12. A Cure or A Profit – Council of Canadians 13. Native Youth Leader Resigns Over “Unusual” Police DNA Demand – David P. Ball, 22 Aug 2013, 24 Hours 14. Courts protect public against scientific “elite” - 14 Aug 2001, National Post 15. Genomes to fuel economic 'revolution' - Michael Lewis, 31 May 2002, Financial Post 16. Estonians bet on gene pool - Maeve Haldane, 11 Jun 2001, National Post 17. Estonia sells its gene pool (A genetic database project is an ethical timebomb) - Michael Gross, 09 Nov 2000, The Guardian

February 3, 2016

RIGHT TO KNOW WEEK

When I was in B.C. I attended a “right to know week” talk at the library. A woman who represented the library introduced someone from the Privacy Commissioner's Office, someone from the police department and another person. These three people then gave their talk. Basically, the Privacy Commissioner's Office and the police department talked about how wonderful they were. It was all one-sided; there was no one on the dais to disagree with anything they said.

But the audience had an opportunity for questions and comments. Most were directed at the Privacy Commissioner's office. The first at the microphone was a gentleman. Just after he started talking he was interrupted by the woman from the library, who yelled at him comments like “who cares what you think”, “who cares what you have to say” and so on. He had the microphone and she had no right to speak. When she was finally finished, the gentleman continued with his comments/questions as if she hadn't spoken. I admired his patience and fortitude. I sat in the audience, astounded by this woman from the library, and said nothing. I should have spoke up but I didn't. I would now.

A couple rows behind the microphone sat three women in the last three seats of the row. They ridiculed the people who were speaking at the microphone. I didn't get the impression that these women just walked off the street and thought it would be fun to listen to the speeches and then heckle the people in the audience who spoke. It looked planned. I, and I'm sure others, gave them dirty looks. Finally, they left. But again, I should have spoke up but I didn't. I would now.

It seems that you have the right to know, as long as it is what the government and their toadies want you to know (otherwise known as propaganda).

Lack of Independence

Mary Carlson was Executive Director of the Office of the Information and Privacy Commissioner for B.C. She then became Deputy Registrar of the Office of the Registrar of Lobbyists for British Columbia. The privacy commissioner's office is suppose to operate independent of the politicians, both provincially and federally. But, I don't believe you can operate independently if your next job depends on being “liked” by the politicians. It's all smoke and mirrors.

David Loukidelis was the B.C. information commissioner before he accepted the post of deputy attorney-general. As Vaughn Palmer pointed out, by bringing him in-house they silenced a critic (in some areas), at a convenient time and turned the critic into a lap-dog. (Sabotage? Or merely incompetence?, Vaughn Palmer, 25 Jan 2010, View from the Edge).

January 28, 2016

PLOYS (or TACTICS)

(Also read prior posts “Assault” July 22, 2010, “Security Guards, August 8, 2009, 'Threats” September 4, 2008)

I include this post because I think people should know what happens, in Canada, when they exercise free speech against the government. You will be threatened (life, limb, family, job...), intimidated and harassed, plus they will attempt to demean you, and will use diversionary tactics when they can't prove that what is being said is false. I don't say this to scare people off, to prevent them from speaking the truth, quite the opposite. It is only when more voices speak out that these threats against our rights, our democracy, our lives, will stop.

Someone told me at the beginning of my time in front of St. Paul's Hospital that the degree to which they try to intimidate, harass and threaten you is a reflection of how close you are to the bulls-eye. I thank the person for the comment because it helped me over the years to withstand the abuse.

A man, while professing to agree with my handout, claimed that he did not buy into conspiracy theories. I find the use of the words “conspiracy” and “paranoia” very manipulative. If you want to demean someone and try to shut someone up those words are usually used. My response to this man was that since the politicians, and the catholic/medical business, refuse to tell us with whom they are sharing our information and how it is being used then obviously something unethical and morally illegal is going on. These questions are so straight forward there shouldn't even be an issue about answering them honestly. So, until possibilities are proven to happen or not to happen, anything is possible. I try to keep an open mind to all possibilities.

They also tried the “I'm your friend” tactic. They would pretend they agree with what you are doing, act as if they are on your side so they can collect information on you and try to manipulate you. For example, a guy came up to me and said he was a doctor, agreed with everything I was saying, knew information was going all over the place, and so on. By now I had given up talking to medical people because my experience was that they just lie, con, and harass. But he knew information was going all over the place, and did I know what they were doing now so I was interested, he caught me. As I listened to what they were doing now I heard him talk about medical personnel and how they had to get immunized and a list was posted showing who was and who wasn't immunized, etc. So he talked about the medical personnel, not the patients. All he seemed to care about was his own self-interest, not the patients. Then he said, what I believe was the real message, “everyone that walks by thinks you are striking, everyone who walks by thinks you are crazy, you can't accomplish anything”, and so on. What I found interesting in his comments was:

1. His assumption that he knows what everyone who walks by is thinking.

2. People thought I was striking and thought I was crazy. I think that says more about him and the rest of the medical personnel than me.

3. If I wasn't accomplishing anything then the medical system wouldn't have people like him constantly trying to persuade me to “go away”.

I don't mind people debating the issue(s) or telling me I'm wrong if they can prove it. But these people have no facts, evidence or rational argument to dispute what I say so they attack the messenger, not the message. In fact, I would have loved to have had it proven that I was wrong. But my own experience, investigations such as the auditor general's, and breach after breach proves otherwise. Actually I think they should change the word breach to a flood. When everyone's information is being shared that is no longer just a breach. (see post Auditor General – PARIS report – 5/24/2010 and post Our Privacy Is Not Protected – Parts I and II – 12/27/2015 and 12/29/2015)

A man, walking by while I was at St. Paul's Hospital, told me that if I pushed this issue too far “they” would put me in a padded room and then only god could help me. I wouldn't have been surprised because that's our so-called democracy.

When I first stood in front of St. Paul's Hospital it was mostly men who came to “talk” to me. Some would try to be my friend, some would make comments like “looking for a date”. I wondered if they were using a typical government tactic that I call the “pimping tactic”. If a woman isn't happy in her job (or whatever) just get her a man (or a second one) and get her F(well, you know the word) and she'll be fine. That didn't work so after a while, they sent the women to “talk” to me. That didn't work either so it must have confused the hell out of their small minds. The women sometimes even had “handlers”. Example, a woman came to “talk” to me. Realizing that she was from the hospital I turned and walked away. When I turned around again I saw her ask, through gestures and voice, a male, standing on the steps of St. Paul's Hospital, what to do next. He told her to come back to the hospital. When he saw me watching he weakly smiled and shrugged. I was at a public talk and the speaker said that they didn't want anyone to be in the room who didn't support public health care. I got the impression that it was directed at me and possibly a few other people. Some people have tried to claim that by raising awareness of what the medical system is doing that I am supporting private health care. That was another ploy to try to make me go away, to discredit me. I don't support private health care and I have no doubt that their privacy issues are as bad or worse than the public sector. You could look at the medical system like a child. A child wants what it wants and will throw a tantrum to get it. If you want that child to grow/evolve into a decent human being/institution then it has to learn morals, ethics, integrity, caring, compassion, accountability, transparency and that it does not pick on those more vulnerable (only cowards do that). And, of course, a child/institution does not learn better behaviour if you ignore, or support, their wrong-doings. Its people who don't care about the public health system who ignore/support their bad behaviour. Of course, those working in or running the catholic/medical system are adults but, apparently, they still need to be taught the values we want the institution to reflect. They do have a bad influence, the politicians, so this will be difficult.

It was obvious I had been researched. They would tell me information, that was suppose to be private, in a variety of areas non-medical. I assume the purpose was to intimidate me, as in 'see we can access any information on you we want'. Example, I had responded, years ago, to a request for comments, by the government, on the privatization of Canada Post. The comment was suppose to be confidential. At St. Paul's Hospital, a person had approached me at the same time as another person, but supposedly independently, yet both asked questions, for whatever reason, about my views on the U.S. As one of them was leaving, she had her back to me, then turned her head around and gave me a knowing look and, out of the blue, said that Canada Post would be privatized (this had not been part of our previous conversation). So I guess that's a done deal although maybe not with Trudeau “in power”.* But I don't think her comment was about Canada Post per se but about letting me know they had access to this confidential information. I was raising awareness that our privacy was being violated and they thought they could scare me away by continuously proving that I was right. Strange people!

I was threatened, intimidated, assaulted... and not just in front of St. Paul's Hospital but I encountered this in the other areas of my life. This is just one example of the many things that happened, someone left a “gift” on my doorstep which I turned over to the police. I could take it because I believed in the necessity and importance of what I was doing. I actually found it fascinating, in a macabre way. I knew that it wasn't about me but it spoke volumes about them. These are people who couldn't refute what I was saying. So, instead they pulled every underhanded trick they could to make me go away. And this from people who claim to be caring, compassionate and democratic. I would stand there and wonder, my gawd, what are they doing to us that they have to go to such lengths to hide it. So, instead of scaring me away, they make me realize how important it was that I stay and raise awareness.

They said, and did, anything that they thought would intimidate me or embarrass or demean me. What they thought would embarrass/demean me was really a reflection of THEIR discriminations. It certainly told me a lot of what they thought of certain segments of the population. I wondered how these segments of the population were treated as patients (actually, I did find out a little bit -see “My Story”).

I reached a point where I thought they couldn't shock me anymore and then they would do something that would shock me. Finally, I realized that I can't think as low as they can sink. So each time they pull something that is even lower than usual I am shocked.

I had already planned on leaving B.C. for a variety of reasons such as the continual violation of privacy. I didn't want to be sold/traded/bartered. So my illness didn't scare me away but it did move the agenda up a bit (see future post “My Story”).

It certainly appears they have been trying to find something to hang me with, to blackmail me into going away. Since I haven't totally disappeared I'm sure they will keep trying. It's what they do to hide things. But who/what I am doesn't matter, whether I'm evil or a bloody saint, what matters is whether the information I give out is true. And that is easy enough for people to determine besides the sources I provide. Ask the health system exactly who they share your information with, and the purpose, and when they won't give you a real answer, ask yourself why. What information does the medical system collect on you, why, and is it necessary for your specific health concern? If they want information for any other purpose, why don't they let you know and ask your permission? And, of course, there are the continual scandals proving that our information is not being protected.

You do have to use common sense when you ask them questions. When I was in front of St. Paul's Hospital a person told me that she had asked the medical staff about whether her privacy was protected. And they said it was protected. Well, what did she think they would say? Seriously, to assume that the medical staff would admit that her information wasn't protected, was being shared all over the place, was farcical. You have to get any answers in writing or, otherwise, tell them to prove it because they lie, as all the evidence proves.

*An aside – After I moved I contacted Canada Post regarding an issue with mail forwarding. I was told that, before they would look into the issue, I would have to give them my phone number or email address because they don't communicate by mail. I read an article in the Globe and Mail titled Canada Post Head Makes Big Bet on his 'winning horse' , by Barrie McKenna, May 25, 2015, in which CEO Deepak Chopra chastised Canadians for not using mail. I wrote to the CEO Deepak Chopra about my issue and his hypocrisy. I received a response by mail. Was he selected as CEO to ensure Canada Post's privatization?

January 27, 2016

SELF-ENTITLED

The Charter of Rights and Freedoms – Fundamental Rights:

Section 15.

1. Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination (1)

The privacy act is a legal document.

Yet, the medical business has a two-tiered system, those who have the right to privacy (those with a sense of self-entitlement) and those who do not, those who are sold/traded/bartered/experimented on and those who are not. The self-entitled people, as selected by the medical business, have rights the rest of the citizens do not. The self-entitled people include medical personnel. That's one of the reasons they don't care about our rights because their rights are protected.

And isn't it called discrimination when one group has privileges that is denied to another group.

I believe the two-tiered system, giving some people rights and privileges denied to others, is a violation of the Charter of Rights and Freedoms, a violation of the law, a violation of our fundamental rights. But, as we know, the medical business/government do not care about the rights of most citizens or the law.

Elites, Upper/Lower Class

I often hear/read the terms elites, upper/middle/lower class which imply that some people are better than others, that some people are “inferior”. It usually is used relative to money and power. I would hope people would find new words because some people are NOT better than others. For example, a person gains a lot of money by brown-bagging (Brian Mulroney, and others, were accused of this), and other unscrupulous means vs a person who wins a lottery and gives it away, not because they have a lot of money but they have enough and others do not. Who would you consider the better person, the elite, the upper class? I would hope that people would start using specific terms like the 1%, or people with more money or people with political control.

Sometimes the terms are used in relation to someone who is well-educated in political science or mathematics, etc. but who knows little or nothing about growing food, building a house, or social work and so on. So who is “more important” or is neither and each is simply educated in a particular area (school and/or self educated).

This also applies to the concept of social status; for example, doctors are usually considered to have a higher “social status” again due to money and the “job title”.

I find these terms arrogant, manipulative, a form of brainwashing, as well as archaic, baggage from the past that should be left behind. If the terms social status, elites, etc. referred to people with values such as morals, ethics, integrity they might be appropriate.. But they don't. So – Let's evolve and get rid of them.

January 16, 2016

COMPLICIT

If you have to lie, steal, and con to get information, then what you are doing is neither moral nor ethical.

I believe that everyone who knows about the lies and the theft of our information and body parts, and does nothing, is complicit

I thought at first that these people might be pawns but, in fact, they are willing participants in the lying, conning and theft of our information, our body parts.

I was taught when I was a child that you don't pick on those younger, weaker, more vulnerable; that's only for cowards. I have to assume that the people in the catholic/medical/government business and all they accomplices have yellow streaks up their front, their back and their sides.

Someone told me, when I was in front of St. Paul's, that these people were just getting a pay-cheque, jobs were hard to find. Well, that's what any thief would tell you -- it's just a job. The same for a hit man/woman, who just take the money and carry out the dirty deeds. What you are doing is still unscrupulous, unethical and possibly illegal. And if you are just getting a pay-cheque then there is no caring or compassion in what you do. You do not care about the patients, only yourself.

I was told that I had a lot of support in the medical business for raising awareness of what was going on in the medical business. Is this true? I don't know. But, even if it is, verbal support, especially hidden, isn't enough. You have to DO something.

A few people did provide me with information, usually without evidence, so I had to be careful that I wasn't being setup. But, for those who gave me information, it shows you care but you, and the others, need to speak louder.

Dr. Warren Bell, Salmon Arm, BC wrote Doctor's Diagnosis: Pipeline Symptoms of “Social Pathology”, 04 Feb 2013, TheTyee.ca. He states how he helped found the Canadian Association of Physicians for the Environment or CAPE because they wanted to improve health by improving the environment. I find what I consider to be his hypocrisy mind-boggling. “A 2007 Canadian Medical Association survey showed that 11 per cent of patients already admit to holding back information from health care providers because of privacy concerns.

A 2012 survey “indicated that 43.2% (of patients) have withheld or would withhold information from their health care provider because of privacy concerns, while 31.3% of Canadian patients have or would postpone care over privacy concerns, and 42.9% would seek care outside their communities for the same reason” [Medical privacy breaches rising, Roger Collier, 06 Mar, 2012. vol. 184 no.4, Canadian Medical Association Journal CMAJ)]. And I expect these numbers will continue to increase. And note this refers to patients. How many people don't just hold back information but don't even see a doctor because of privacy concerns? But, do you see the doctors founding an association to “Protect People's Health by Protecting Their Privacy Rights” so they can improve health. NO. And this is an area where they are largely responsible for the loss of privacy and trust. So, what is it that they don't want to give up to protect patients health; Is it pay-cheques, is it kickbacks, an attitude of arrogance/narcissism that patients privacy is irrelevant to medical people?

But getting on the bandwagon of promoting the environment, and other issues, distracts the people from the fact that the catholic/medical/government businesses are adversely affecting people's health by violating their privacy. I think it's a diversionary tactic. The pope is doing it and it diverts people's attention away from the paedophile issue. It's purpose is the make the medical people/pope look good and it doesn't cost them a thing. They don't have to change what they are doing, or give up anything.

Dr. Bell writes about the “structural pathology” in the governance system in Canada. But he ignores the “structural pathology” in the medical system. He adds other comments which, again, he fails to mention could also apply to the medical business. I guess it's a case of “look over there so you don't see what I am doing”.

And Dr. Bell is not alone. Lots of other doctors and their organizations lobby the government for various reasons, such as increasing funding to the health care system. But they don't lobby about privacy rights for patients. Instead they lie, steal and con. Why?

The medical unions, at contract time, like to advertise what they do for the patients. What they fail to mention is how they steal patients privacy/body parts and the negative affects that may have on the patients health and safety. They know privacy is important because, in their own contracts, they made sure their privacy was protected, but not the patients. If privacy is important to the medical staff, why is it not considered important for the patients?

This is from a commenter named cyndi: “I am one of those nurses that is being forced to wear a mask for the next 4 months. I take umbrage against that policy. My rights as a human being are being held hostage to a Health Authority. Why dont they make it mandatory to just give every admitted patient the flu shot on admission to the hospital should be the question....that way all of us front line workers would be so called protected instead of forcing us to get the flu shot every year!!! I think the real discussion here is Are frontline workers human rights being maligned....I am extremely insulted by this Health Authority policy!!! And employees have the right to work in a respectful place free from discrimination. (Are Flu Shots as Effective as Billed, Bill Tieleman, 08 Dec 2014, TheTyee.ca) This is only one person's comment but I include this because it represents an attitude I heard many times, from medical staff, in front of St. Paul's. It's all about them. They get very upset if they feel their rights as a human being are violated but don't care about patients rights as human beings. In fact, she said to do to the patients what they, the medical people, don't want done to them, make the patients have the flu shot. Aren't patients rights as human beings being stolen when the medical people steal their information/body parts? She talks about discrimination against her but isn't it discrimination when medical staff and their special friends have their privacy protected but patients don't. My response, to paraphrase a couple of sayings, is: they came for my rights and you did nothing, so quite frankly my dear, I don't give a damn about you.

I didn't want to spend a lot of time standing in front of St. Paul's taking all the abuse. I didn't want to spend a lot of time researching and writing a blog. But when I realized that the medical business was lying, stealing and conning the vulnerable, the sick, the newborns I couldn't walk away. I know the difference between right and wrong and my values say that you must speak up against injustice. It cost me a lot, in a variety of ways. That was a choice I made because the cost of doing nothing was much higher, to who I am as a human being.

Obviously I won't be in front of St. Paul's anymore which I'm sure makes “them” very happy. But I don't have to be. My blog is still on the internet, people have linked their social media sites to my blog; my blog has over 100,000 page views and counting. It has been, and continues to be, read not only by people in Canada but by thousands of people around the world who are learning how Canada treats its vulnerable, its sick, its newborns. I am on twitter and I will keep raising awareness in one way or another. The information is out there and they don't get it back. And it will continue to spread, a lot of it from their own unethical, immoral actions.

"In order for evil to flourish, all that is required is for good men (people) to do nothing." - Edward Burke

January 15, 2016

ANONYMOUS (OR NOT)

I read that medical information should be shared if it is anonymous. I used to agree with that. Why would I not agree if everything is above-board, if the information was being shared to improve the health care of people and if things were done morally and ethically. But then I found out how the medical system really works.

These posts have examples of how, essentially, all our information has been shared non-anonymously:

-Post – Auditor General – PARIS report – 5/24/2010 – Vancouver Coastal Health audit showed that there was virtually no protection of patient information. And there was no reason to believe that any other hospital database was any better.

-Post - Our Information is not protected – Part I – 12/27/2015 - researchers could, and were, downloading and sharing our information with no detection. They could give it to anyone else, who could also “share” this information, again without detection.

- Post – Our Information is not protected – Part II – 12/29/2015 - more examples of how our information is shared non-anonymously

Post (future) - Patenting DNA – if you collect enough information on an individual, even if it is anonymous, you can identify who they are.

And we know, logically, that this is just the tip of the iceberg. The ones the media happen to find out about. The rest are either not caught or they are covered up.

Now, I would only agree to my information being shared conditionally. The conditions being:

1. I am told if information is being collected for “others” and not for my direct personal health care

2. I am told who it is being shared with.

3. I am told how it will be used.

4. I have proof that the information collected under my name is being adequately protected.

5. It can be proven to me that this information will only be shared anonymously

6. I can get this in writing.

7. There will be severe penalties if any of the conditions listed above are “violated”.

This, of course, presumes that I have any say in the collection and sharing of my information, which in our low-grade so-called democracy; I don't. The medical system and their friends do what they want. I am, like other patients except the “special” patients, just fodder for them to feed off.

But any information that I determine they don't need for my direct health care (and that is very little) I mix up between truth/lies. The information then becomes useless.

These people in the medical/government business just steal, lie and con. Why? They eventually lose all trust and it just comes back on them. What are they getting in return for taking such risks? Or did they really think they could do this forever with impunity? Are they that arrogant/narcissistic? Apparently, they are.

December 30, 2015

WHAT CAN YOU DO - MEDICAL

Number of Breaches Unknown

“The total number of intentional health-related privacy breaches in Ontario is unknown because of legislation allowing hospitals to handle such violations internally and report them at their own discretion. The commission is notified of about 400 health-related privacy breaches every year and a Star investigation of eight Toronto health institutions unveiled 218 privacy violations last year, the majority of which went unreported to the commission”. (c) So, the majority of privacy “breaches” you won't hear about because they are being unreported (covered up), or, as in BC, legalized; and I believe it is the same in all provinces

Mandatory Reporting of Breaches (or Not)

“Michael Crystal, a lawyer currently representing thousands of patients” said it should be 'mandatory for hospitals to report all privacy leaks.” (a) “69.5 percent of Canadian respondents stated that there should be a public listing hosted by the Canadian government that lists which hospitals have had breaches of patient health records”. (c) I suggest this should include “minor” breaches that are not reported to the privacy commissioner and the so-called “major” ones that are reported to the privacy commissioner. Otherwise, we will be hearing a lot of “we didn't think this was serious” excuses. We should be informed as to what defines minor vs major breaches.

“If hospitals were obligated under law to report privacy violations, the (privacy) commission would be able to identify trends, investigate specific areas of concern and help hospitals prevent future incidents, Beamish said” (Ontario privacy commissioner Brian Beamish). (a) This will also help reduce the number of cases that the medical/government organizations can cover-up without being caught. This must also include any breaches by people/organizations with whom our information is shared.

We, the people, need this transparency to ensure accountability.

For the status on your province on mandatory reporting see Ontario lags other provinces in updating health privacy laws, Olivia Carville, 06 Feb 2015, Toronto Star

Identify with whom our information is shared

The medical/government business in Ontario is discussing making changes so it looks like, to use a metaphor, they are trying to lock the front door (hospital violations), so people don't notice that the backdoor is being left wide open (the researchers, suppliers, and other organizations, etc. with whom our information is being shared). We need to know exactly with whom our information is being shared, under what circumstances, whether our consent has been obtained (real not manufactured), what are the conditions that these “others” must meet to protect our information and are these conditions being met.

Audits

We need on-going audits of all people/organizations that handle our information to ensure that our privacy is protected. The audits must be done by people not appointed by the medical/government system. 'In the US, the government has taken several steps to encourage health care providers to improve the security of their information technology systems. In addition to requiring public disclosure of breaches — an incentive in the form of the proverbial “wall of shame” — the US government will be dropping in on some health care providers” to “check compliance with privacy requirements”. “Under their privacy act, health organizations are required to have conducted a risk analysis and implemented policies to protect patient privacy. The maximum annual penalty for violating the act is US$1.5 million.” (e)

Suing for Privacy Breach
“The Ontario Court of Appeal ruled earlier this year that patients can sue hospitals if their privacy was breached.” (d) This should be the law in all provinces and include any people/organizations who have our information.

Prosecutions

“Beamish told the Star he wanted serious breaches to result in more prosecutions to deter nosy health professionals” and the other people/organizations with our information. (a) But we also need to hold accountable those who are suppose to protect our privacy – the politicians, healthcare executives... We need to know why they aren't doing their job. And we need to be able to prosecute them.

In some provinces the health ministry may refer a serious breach to the privacy commissioner who investigates. If the privacy commissioner believes there are grounds for prosecution they refer it to the attorney general, who may refer it to the police to reinvestigate.

So much wasted time and effort because somewhere along the line the case gets dropped.

“Privacy commissioner Brian Beamish has previously told the Star that confusion over the roles of the attorney general, the Health Ministry and the privacy office have also hamstrung potential prosecutions.” (b) All these years and nothing has been done to fix the situation. No wonder there has been zero prosecutions in Ontario, where thousands of privacy violations happen every year. But, I'm sure the politicians have been far too busy going to photo-ops, or lining their pockets, to make adjustments. Or is it just “convenient” to have it this way.

“Ontario is not alone. British Columbia, New Brunswick, Saskatchewan, Prince Edward Island and Yukon have not seen any prosecutions under health privacy laws.” (b)

“Alberta has had three successful prosecutions, Manitoba has had one and Newfoundland and Labrador has had two.” (b) Considering the extent of the problem, this is a farcical record in any province.

Covering up the extent of breaches, or sharing of information, so patients will trust the medical business is not an answer. Eventually patients find out and trust is lost, possibly forever. Withholding information is just another form of lying to patients.

After all the lying, the cover-ups, the conning, “trust us” just doesn't work any more.

(a) Hundreds of hospital privacy violations go unreported - Olivia Carville, 13 Jan 2015, The Star

(b) Ontario government under fire over inaction on health privacy law - Olivia Carville, 05 Mar 2015, Toronto Star

(c) Canada: How Privacy Considerations Drive Patient Decisions and Impact Patient Care Outcomes - December 2011, New London Consulting

(d) Fines to double for breach of Ontario patients' medical records - Keith Leslie, 10 June 2015, CTV News

(e) Medical privacy breaches rising - Roger Collier, 06 Mar, 2012. vol. 184 no.4, Canadian Medical Association Journal (CMAJ)

December 29, 2015

OUR INFORMATION IS NOT PROTECTED – PART II

2. THOUSANDS OF B.C. PRIVATE HEALTH RECORDS SOLD AT PUBLIC AUCTION. (a) Mike de Jong was involved in this one too. He was labour minister whose ministry oversaw the auction process. Again, extremely private information was sold for $300 such as “medical status – including whether they have a mental illness, HIV or a substance-abuse problem”, social insurance numbers, date of births, names, phone numbers, and “caseworker entries divulging extremely intimate details of people's lives”, and more.

Mary Carlson, director of the Office of the Information and Privacy Commissioner of B.C. said “the government had sold sensitive information to the public once before, but that the details of the case had not been made public. She added that she is 'disappointed' to hear it has happened again”. (a)

3. The Human Resources and Skills Development Canada (HRSDC) “lost the personal information of half-a-million Canadians last year.” They lost an unencrypted external hard drive containing Canada Student Loan information and a USB key containing information such as social insurance numbers, medical records, birth dates, education levels, occupations, etc.” (b)

4. Ontario has had so many breaches that they held a press conference to apologize. They told people that most workers in the health system are honest people. That may be true in terms of downloading large amounts of information (lying/stealing/conning information from patients is another issue) but you don't protect medical information from those who won't steal it, you protect it from those who will steal it. So, the government/medical system is responsible for not protecting the information. Just like a bank doesn't install a security system to protect its assets from the 90% who won't steal but from the 10% that will steal. A bank might get its money back but with medical information, once it's out there, it's out there, you don't get it back. Examples:

i. An anti-abortion activist has been accused of prying “into hundreds of abortion records”. DeCiccio worked at a hospital and “the hospital placed no restrictions on what records she could or could not access”. (c)

“Since being informed of this case in May 2011, Beamish (acting privacy commissioner) said he has noticed a concerning trend where increasing numbers of hospital staff are accessing patient records without authorization, including the recent breach of former mayor Rob Ford’s medical files”. (c)

ii. “Hospital workers in Toronto have been disciplined, and some fired, for taking photos of patients without their consent, losing scores of health records or inappropriately prying into a patient’s file when they are not involved in their care.” (d)

“Earlier this year, the Star unveiled two major hospital privacy breach cases involving thousands of patients. In one case, hospitals inappropriately provided patient information to baby photographers. In another, hospitals were handing out patient contact information to private marketing companies.” (d)

iii. Six greater Toronto area hospitals apparently sold patient information to photographer(s). And yet, Mount Sinai, one of the six, said “Since we learned of this breach (italics mine), we have changed our practice..”. This implies they didn't know what they were doing; they had a contract to sell this information but they didn't know they were doing it; how does that happen? (e)

iv. Other examples you may want to read about: Rouge Valley hospital privacy breach expands to affect 14,450 patients, Joel Eastwood, 27 Aug 2014, Toronto Star; Hundreds of hospital privacy violations go unreported, Olivia Carville, 13 Jan 2015, Toronto Star; Ontario lags other provinces in updating health privacy laws, Olivia Carville, 06 Feb 2015, Toronto Star. A few of the examples you will read about in this articles: “pharmacist opening medical records of fellow congregants”; “a doctor who snooped into 141 women's medical records, including gynecology reports” (h); “while standing in line for a pizza...doctor chatted on his cellphone about the private details of a patient” (i)

v. Another informative article: Peterborough lawsuit to set precedent for Ontario patient privacy rights, Joel Eastwood, 03 Sep 2014, Toronto Star. Update: This lawsuit was dismissed because the prosecutors bungled the case (Ontario's sole health privacy prosecution quietly dismissed, Olivia Carville, 30 Mar 2015, Toronto Star). How convenient. But two more cases are on the go.

The worst that happens to the few privacy violators actually caught is they are fired. “Beamish (acting privacy commissioner in Ontario) is aware of only two provinces, Alberta and Newfoundland and Labrador, which have successfully prosecuted under health-related privacy acts”. (c) This indicates that the privacy acts are useless, a facade. Quite frankly, I don't think just being fired is much of a deterrent for severe cases of privacy violation (for example, when information is shared). What happens to these fired people?; do they get rehired after a period of time (see post “BC Nurses”, Nov. 4, 2008), do they go to work in a nursing home or other facility (Ontario's sole health privacy prosecution quietly dismissed, Olivia Carville, 30 Mar 2015, Toronto Star)?; are they required to pay back any benefits from the privacy violation?

I think the ability to sue the hospitals is important in order to get them to take this issue seriously. Despite the fact that the medical system always say “we take the protection of people's privacy very seriously”, obviously they don't. But, I believe, the prospect of being sued may encourage hospitals to coverup even more violations. What is also required is some kind of oversight/ongoing audits conducted by citizens groups (or something similar), not chosen by, and outside the influence of, the political/medical organizations.

When I was in front of St. Paul's, a couple years before the press conference, one person said he worked in a pharmacy in Ontario and that Ontario had tightened up its privacy and people in the pharmacy now had to get permission to access previously available information. Apparently, it is VERY INCONVENIENT. Isn't that sad. Protecting people's privacy is INCONVENIENT for people in the medical business. Accessing patient's information SHOULD be difficult and if that's inconvenient to researchers, etc. then find another line of work. Yet, these recent scandals indicate that they are still doing a very poor job at privacy protection.

I commend the Toronto Star for its investigations and reports. If only other media, in other provinces, would do the same, it would prevent a lot of patient suffering in the future.

5. “Personal health information belonging to 620,000 Albertans and stored unencrypted on a private company’s laptop was stolen” in Sept. 2013. “The data on the laptop included patients’ names, dates of birth, provincial health card numbers, billing codes, billing amounts and diagnostic codes.

Medicentres Family Health Care Clinics chief medical officer Dr. Arif Bhimji said “Medicentres “immediately” contacted the Edmonton Police Service and Office of the Information Privacy Commissioner”. Apparently, immediately was four days later. But no one informed the Alberta Health (who eventually received a letter) or the patients (informed by the media) until January 2014.

The politicians were, of course, “outraged”. But isn't it their job to ensure that our privacy is protected, even when they outsource? But I guess it sounds good in the press.

Alberta Medical Association president Dr. Allan Garbutt said physicians are trained from early on to keep all medical information highly protected based on the principle that it belongs to the patient and no one else”. He admitted that there are numerous ways medical information can be misused (italics mine). The British Columbia medical business seems to operate on the principle that patient information belongs to everyone but the patient. Does Alberta medical staff give anything but “lip service” to this principle?

As one patient said: 'I don’t want my diagnosis given to just anyone. It’s up to me to disclose what is happening to me'. In my opinion, this also applies to researchers. As we know from researchers health scandal (prior post – Our Information Is Not Protected) the medical business and anonymous are total opposites. Apparently the Medicentres laptop has never been recovered.

There have been more than “four other similar incidents that affected hundreds of thousands of people in the last decade” (that we know of). (g) Most involved the theft/loss of laptops.

6. “For a precedence on how bad privacy breaches in Canada can be, one need look no further than the case of Captain Sean Bruyea, a Canadian Air Force officer who served in the Persian Gulf War in 1991. Without his permission or knowledge, all of his personal, medical and financial files were distributed across a wide swath of officials in the Department of Veterans Affairs, who used this as ammunition to try to silence what was a fierce critic for Canada’s returning veterans. A total of 54 people had inappropriately accessed Bruyea’s file; 36 received an ‘administrative memo;’ nine were reprimanded and nine received one-day suspensions. Nobody was fired. No one. Let's put this in context: When government employees were actually found to be egregiously breaking the law in accessing personalized files, not a single person was fired.” Scandal taints BC Ministry of Health's Pharmaceutical Services Division, Alan Cassels, April 2013, Common Ground

7. I suggest you read Your Information Is Not Secure, Michael Geist, 01 May 2013, TheTyee.ca. This report reveals that “virtually every major [federal] government department has sustained [privacy] breaches and gives examples. It also states that the Privacy Commissioner of Canada is rarely notified of the breaches.

8. A binder was stolen from a doctor's car containing information on B.C. Transplant patients. It included patient names and other information. Patient Information Stolen,16 Dec 2011, 24 Hours

9. Other examples of the medical business' hypocrisy regarding patient privacy:

i. When I had to go through the medical system (see future post “My Story”) I would stand at reception at the doctor's office or office of other medical people and be asked to provide personal information while there were people directly behind and beside me, who could easily overhear everything being said. In some cases, I tried writing the information on a piece of paper or answering very softly and they would repeat what I said so loudly the whole waiting room, or most, could hear. At Burnaby General Hospital, in emergency, they have the reception desk right in front of the waiting room where everyone, or most, could overhear the conversation regarding the collection of personal information.

ii. I was in a doctor's very small reception/waiting room. The staff would talk to patients on the phone, sometimes even stating the patient's name. People in the waiting room couldn't help by overhear the conversation.

iii. I was in a pharmacy where they had a sign which said “stand back to respect people's privacy”. The pharmacy wasn't that large so you would have to stand half way, or more, across the room, to avoid hearing the conversation. The counter was also near the door so there was traffic coming & going.

But, hey, just ask them and they will tell you “your information is protected”. They don't care about people's privacy.. It's inconvenient, to them.

THE ONLY SAFE INFORMATION IS THAT WHICH ISN'T GIVEN

a. THOUSANDS OF B.C. PRIVATE HEALTH RECORDS SOLD AT PUBLIC AUCTION - Jonathan Fowlie, 04 Mar 2006, Vancouver Sun (a paper I didn't buy)

b. Human Resources bureaucrats questioned over data breach - Jessica Murphy, 15 Feb 2013, 24 Hours

c. Anti-abortion activist snooped into 414 abortion files - Olivia Carville, 21 Jan 2015, Toronto Star

d. Hospital privacy violations rife in Ontario - Olivia Carville, 29 Oct 2014, Toronto Star

e. Privacy breach: Six GTA hospitals gave patient info to photographers - Joel Eastwood, 29 Aug 2014, Toronto Star

f. Laptop with 620,000 Albertans' personal health information stolen - Robson Fletcher, 22 Jan 2014, Metro News

g. 4 other cases of stolen health data in Alberta - 22 Jan 2014, CBC News

h. Ontario lags other provinces in updating health privacy laws - Olivia Carville, 06 Feb 2015, Toronto Star.

i. Hundreds of hospital privacy violations go unreported - Olivia Carville, 13 Jan 2015, Toronto Star

December 28, 2015

SOME PARTICIPANTS IN HEALTH MINISTRY FIRINGS

- Alana James – a lawyer who worked as a senior health information advisor; whistleblower who no longer works for the ministry (g)

- John Doyle – auditor general (p)

Alana and John – I have the utmost respect and admiration for both of you.

Premiers (n) The big turdits, ultimately responsible for ensuring that our information was protected and none of them followed the law, i.e. FIPPA (in effect since 1993) or The Privacy Act . Isn't this, at best, a dereliction of duty?

- Christy Clark (Liberal) – 14 Mar 2011
- Gordon Campbell (Liberal) – 5 Jun 2001 to 14 Mar 2011                                                   - Ujjal Dosanjh (NDP) - 24 Feb 2000 to 5 June 2001
- Dan Miller (NDP) – 25 Aug 1999 to 24 Feb 2000
- Glen Clark (NDP) - 22 Feb 1996 to 25 Aug 1999
- Mike Harcourt (NDP) – 5 Nov 1991 to 22 Feb 1996

Health Ministers (o) (next in line regarding ultimate responsibility)

- Terry Lake – 10 Jun 2013 - current health minister

- Margaret MacDiarmid – 05 Sept 2012 to June 2013 - then health minister - *

- Mike de Jong – 14 Mar 2011 to 05 Sep 2012 – health minister when two of the known “leaks” occurred and the “investigation” began - *

- Colin Hansen – 30 Nov 2010 to 14 Mar 2011 - *

- Kevin Falcon – 10 Jun 2009 to 30 Nov 2010

- George Abbott – 16 Jun 2005 to 10 Jun 2009 - *

- Shirley Bond – 15 Dec 2004 to 16 Jun 2005

- Colin Hansen – 05 Jun 2001 to 15 Dec 2004 - *

- Corky Evans - 01 Nov 2000 to 05 June 2001

- Mike Farnworth - 29 Feb 2000 to 01 Nov 2000

- Penny Priddy – 18 Feb 1998 to 24 Feb 2000

- Joy MacPhail – 17 Jun 1996 to 18 Feb 1998

- Andrew Petter – 28 Feb 1996 to 17 June 1996

- Paul Ramsey – Sept 1993 to Feb 1996

Also, there are deputy ministers, associate deputy ministers and assistant deputy ministers and the opposition health critics but no one did, or said, anything. This wasn't a small error, a slip up, this was/is huge, this was/is intentional. Did it make it easier to share our information with all their despicable friends and party donors, for example the pharmaceutical companies??

Opposition party leaders and heath critics, such as Adrian Dix, also had a responsibility to speak up but they didn't. And I don't believe that they didn't know that the health ministry was massively violating people's privacy and the law. And as John Doyle said, this issue goes beyond the health ministry (see post “Our Information Is Not Protected – Part I”).

Some of these people will leave office and try to redeem themselves. But we know who they are and, at least some, of what they have done. It's like Tony Blair and Condaleeza Rice who are responsible for hundreds of thousands, or is it millions, of injuries and deaths of innocent people during the Iraq war (some consider them mass murderers), but after they leave office they go on a “peace” mission to redeem their reputation. Like other politicians, they can't. They are what they are and they did what they did and nothing will change that. Their stench will continue to emanate from them forever.

OTHERS INVOLVED

- Graham Whitmarsh – “deputy minister at the time of the firings and later fired by the government” (c) ( lost his job as part of a post-election “shuffle” of cabinet ministers and deputies); “was one of the people who signed off while working in the finance ministry last year on forgiving David Basi and Bob Virk's $6 million legal fees after they pleaded guilty to charges in the BC Rail corruption case.”(h) - John Dyble – was deputy minister of health services, now deputy minister to the premier (g)

- Stephen Brown – assistant deputy minister until April 2011, then to Ministry of Children and Family Development (p), now deputy minister for health (c)                                               - Elaine McKnight – “associate deputy minister in health supervised the people who conducted the early stages of the investigation” (c) and current head of the public service agency (replaced Tarras)(g)                                                                                                      - Health Ministry assistant deputy ministers Lindsay Kislock, Manjit Sidhu and Barbara Walman, were put in charge of the investigation (f), and the public version of the report had their names redacted from the terms of reference for the 2012 review that eventually led to the firings, included in McNeil's report as Appendix C. (j) Manjit Sidu was also direct supervisor to Alana James (see his comments to her concerns).f)
- Bob Nakagawa “left his position as assistant deputy minister in charge of the pharmaceutical services division in April 2012” (h)                                                                                                                                   - John Bethel – “a former BC Liberal candidate and member of Premier Clark's transition” team replaced Bob Kakagawa (h)
- Linda Tarras – head of PSA and retired at the end of October 2014 and wrote the terms of reference for the review (i)
- Rebecca Warburton – co-director of research and evidence development in the ministry's pharmaceutical services division and Roderick MacIssac's thesis supervisor (h)
- Bill Warburton – has a PhD in economics and worked as the director of the economic analysis branch for the former ministry of human resources, had a $1 a year contract that gave him access to drug data (h), a health economist who had just been hired by the University of Victoria to oversee an Alzheimer's disease drug research project, (29)
- Roderick MacIsaac – a PhD student in the University of Victoria's school of public administration, on a co-op work term, Rebecca Warburton was his advisor. Mr. MacIsaac committed suicide. (l)+                                                                                                               - Bob Hart – the director of data access, research and stewardship (k), with the ministry for 30 years(h)                                                                                                                                - Ramsay Hamdi, a senior economist in the utilization health care and risk management branch (14)
- David Scott – a senior researcher in the analysis branch (h)
- Malcolm Maclure – a director of research and evidence development with the ministry's pharmaceutical services division (30) and had appointments to Uvic and the University of BC (14)
- Ron Mattson – a special projects manager with PharmaCare, was involved in the Alzheimer's Drug Therapy Initiative (14), an employee for 27 years (h); a View Royal city councillor(m)
- Sara Brownlee – led the team that undertook the investigation and member of staff of PSA (c)
-Investigator from the chief information officer's office. “Sara and Wendy were, to my knowledge, the only individuals who attended every meeting and employee interview." [Graham Whitmarsh]. The pair was key, he said. "They collected all evidence and wrote all reports with respect to the entire investigation process. In addition, they drafted all the letters advising employees of disciplinary actions." (c)
- Dale Samsonoff – advanced education executive director (d)                                               - Ted Boomer - director of the Ministry’s Accounting Operations Branch (b)

- Grace Foran - health director of executive operations (d) - Greg Tonn and Don Rintoul (d)

- Ryan Jabs – Ministry spokesperson (f)

- Laine Coopsie – senior audit advisor in the health ministry (f)

- Jay Chalke - Ombudsperson

- Linda Kayfish – she's wasn't a participant - sister of Roderick MacIssac, an outsider, she's fighting for his rights

Other Names You May Find Interesting (e)

Provincial Health Services Authority

Board Chair: Wynne Powell
President and Chief Executive Officer: Carl Roy

Fraser Health

Board Chair: Wynne Powell
A/President and Chief Executive Officer: Dr. David Ostrow

Dr. David Ostrow – was CEO of Vancouver Coastal Health Authority (VCHA) – see post “Auditor General's report” – now a/president and CEO of Fraser Health Authority (things never change, just moved around) (see post “AUDITOR GENERAL – PARIS REPORT, May 24, 2010 and post “AUDITOR GENERAL, June 10, 2011)

Interior Health

Board Chair: Norman Embree
President and Chief Executive Officer: Dr. Robert Halpenny

Northern Health

Board Chair: Dr. Charles Jago
President and Chief Executive Officer: Cathy Ulrich

Vancouver Coastal Health

Board Chair: Kip Woodward
President and Chief Executive Officer: Mary Ackenhusen

Island Health

Board Chair: Don Hubbard
President and Chief Executive Officer: Dr. Brendan Carr

Geoff Plant, former BC Liberal attorney general, now chair of Providence's board of directors (and round and round they go)

:How much did we pay these “people” to lie and/or know NOTHING

* Margaret MacDermid said "It's not clear at all to me and I don't believe it's clear to anyone as to why this happened." (s)

Mike de Jong said about the situation: “"it's disappointing, it's troubling." "One of the things I as health minister had endeavoured to promote is responsible access to the treasure trove of data we hold as a society with a PharmaCare program"; (t)

Colin Hansen said, in March of 2012, "They're being overly cautious, let's put it that way. And the result of that is that the process is way too time-consuming and frustrating for those responsible researchers who want to get access." and “sufficient safeguards are already in place to assure both the anonymity of records and to ensure they will only be released to responsible researchers”. (q)

George Abbott said, regarding the firings, "I have no idea how something like that came to be," (r)

Margaret MacDiarmid and Terry Lake lied repeatedly about the non-existent RCMP investigation (see post “Our Information Is Not Protected – Part I)

a. Fired health ministry employee 'mystified' by dismissal – Andrew MacLeod, 12 Sep 2012, The Hook

b. The best place on Earth (for pharmaceutical companies) – Alan Cassels, Mar 2013, Online

c. What We Know So Far about the Health Ministry Firings – Andrew MacLeod, 19 Dec 2014, TheTyee.ca

d. BC Gov't Hiding 'Embarrassing' Reports, FOI Advocate Says – Andrew MacLeod, 26 Jan 2015, TheTyee.ca

e. British Columbia Health Authorities Webpage – 17 Mar 2015

f. Emails Shed Light on Origins of Health Ministry Probe, Firings – Andrew MacLeod, 21 Oct 2014, TheTyee.ca **

g. Key Health Ministry Advisor Was Surprised Firings Targeted Just 'Low Level People': Emails – Andrew MacLeod, 6 Nov 2014, TheTyee.ca **

h. 'I Thought I Was Doing a Good Job': Fired Health Ministry Staffer, Andrew MacLeod, 12 Sept 2012, TheTyee.ca

i. Sister of Fired Researcher Losing Faith in Government Probe – Andrew MacLeod, 5 Dec 2014, TheTyee.ca

j. Fork over Full Health Firings Findings: Dix – Andrew MacLeod, 8 Jan 2015, TheTyee.ca

k. BC Gov't Faces Third Lawsuit over Health Ministry Firings – Andrew MacLeod, 12 Mar 2013, TheTyee.ca

l. Fired Health Ministry Worker Found Dead – Andrew MacLeod, 10 Jan 2013, TheTyee.ca

m. Research Stopped by Ministry Might Have Cut Big Pharma Profits – Andrew MacLeod, 8 Sept 2012, TheTyee.ca

n. Premiers of British Columbia 1871 – today, British Columbia government website

o. How many health ministers does it take to run B.C.'s medical system...? - Pamela Fayerman, 14 Mar 2011, Vancouver Sun (a paper I never buy)

p. Independent inquiry urged into botched health ministry firings - Rob Show, 2 Jul 2015, Vancouver Sun

q. Bill easing research access to ehealth data sparks privacy fears - Craig McInnes, 03 May 2012, Vancouver Sun

r. George Abbott Quits Liberals He Sought to Lead - Andrew MacLeod, 30 Jun 2015, TheTyee.ca

s. B.C. Health ministry says RCMP called to investigate conflict allegations - Dirk Meissner, 06 Nov 2012, The Canadian Press

t. Health ministry fires fifth person in data, contract investigation - Andrew MacLeod, 13 Sep 2012, The Hook

**Alana James comments

December 27, 2015

OUR INFORMATION IS NOT PROTECTED – PART I

If you can't protect it, don't collect it.

Personal health information is one of the most sensitive categories of personal information held by public bodies. (11)

Personal health information is much more than ‘just data’ – it is sensitive information provided confidentially in the context of care. (11)

The politicians and all their friends keep lying about protecting our information. For example:

1. The BC Ministry of Health was tipped, in March of 2012*, by the office of the BC Auditor General that it had “received an anonymous allegation about contracting irregularities and research practices, including inappropriate access to personal information” at the Pharmaceutical Services Division. (11) Another ministry division was also involved.(11)

The Health Ministry fired seven people and froze several drug research contracts. (42)

The B.C. Privacy Commissioner conducted an investigation after the Ministry of Health revealed, on July 13, 2012, that “government employees downloaded large amounts of personal health data onto unencrypted flash drives and provided it to unauthorized individuals”. And this wasn't one loss. First it was unauthorized sharing of 21,000 people. Then it was 38,000 people. Then it was “the data of five million** British Columbia’s covering a number of years.” According to Wikipedia, the population of BC in 2011 was 4,400,057. In other words, everyone's information was shared NON-anonymously, including those who had moved out of province. It included “sexual history, Medical Service Plan claims, hospital admission records, healthcare numbers, dates of birth and gender.” (1, 6) plus “alcohol and drug use, ... postal codes” (2). Enough information to identify the patients.

“One incident breached an agreement with Statistics Canada involving 38,000 people whose information in the Canadian Community Health Survey was collected from census data between 2000 and 2010, said a Health Ministry spokesman.” “Individuals participated in that survey and shared their most sensitive information such as sexual health and sexual preferences on the basis that that information would not be shared,” she said. (2)

“There was an agreement and a consent to have that information used only for specific purposes within the Ministry of Health. When that information was disclosed that was really a breach of an agreement and it goes to the issue of trust that individuals have in the health-care system.” (2) Statistics Canada had promised individuals who completed the survey that the Ministry would not disclose any of their information in personally identifiable form. (11) Again, the government just lies. They either didn't check the Ministry of Health to determine if there was adequate security or they didn't care. Statistics Canada was apparently content with a worthless agreement, and, it seems, has taken no action on the violation of the agreement.

Margaret MacDiarmid said that “It appeared researchers were getting data for one purpose, then using it for another research purpose”. (14)

“The purported recipients of the information were two contractors and a researcher” (11) and involved the University of Victoria, University of BC and the Therapeutics Initiative.

BC's Privacy Commissioner made 11 recommendations (Note: the privacy commissioner can only recommend, not enforce). You can read the report at www.oipc.bc.ca , Investigation Report F13-02, dated June 16, 2013. “The report does not address criminal or civil culpability on the part of the Ministry, its employees or contractors. “

Some points from the report (35 pages, some of it repetitive):

- The Privacy Commissioner stated the Ministry didn't even have “adequate safeguards to protect personal information, both in the delivery of health care and research using health data.” (11) (bolding/italics mine)

- The ministry failed to translate privacy and security policies into meaningful business practices. The primary deficiency at the ministry was a lack of effective governance, management and controls over access to personal health information. (11) In other words, the policies, the protection of our information, were just words on paper.

- The information was shared via portable storage devices (easily lost/stolen/copied/given away).

- “The ministry didn't have an inventory of its personal-information databases or a program to monitor any unauthorized use and disclosure of citizens’ information by contracted and academic researchers”. (3) So, people could steal this information and sell/trade/barter it without risk of being caught, unless a whistleblower comes forward, and maybe not even then. - “There were no mechanisms to ensure that researchers were complying with the privacy requirements, as stipulated in contracts and written agreements”. (11) Again, the contracts/agreements were just worthless words on paper. - There were insufficient physical and technological safeguards to prevent copying of sensitive personal information onto portable storage devices. The Ministry failed to monitor the access, use and disclosure of sensitive personal information. It also failed to impose effective security provisions in some of its contracts and information sharing agreements. Given the level of sensitivity of the personal information involved, the Ministry did not provide reasonable security. (11)

Terry Lake, Minister of Health as of June 10, 2013, blamed the employee's for the lack of “mechanisms to ensure that researchers were complying with the privacy requirements”. (48) Isn't that the Minister's job to ensure “mechanism's” are in place for the proper running of a ministry? Plus, this went beyond researchers; the Ministry didn't have adequate safeguards even for the delivery of health care. But this is typical politician behaviour to blame someone else for the politicians obvious incompetence or chosen behaviour.

In a report, dated February 9, 2009, The Acting Information and Privacy Commissioner, Paul Fraser, “found MCFD and MHSD failed to make reasonable security arrangements to protect personal information from risks such as unauthorized access, collection, use, disclosure or disposal as required by the Freedom of Information and Protection of Privacy Act (FIPPA). In addition, 'Commissioner Fraser found a troubling lack of knowledge within the Ministries about the rules respecting the protection of personal information'”. (prior post, Privacy Breaches, 11 Jun 2011)

And again, a report was released in 2010 by then Auditor General John Doyle who had conducted an audit of a Vancouver Coastal Health Authority database He found almost identical “problems”. (prior post “Auditor General – PARIS report” 24 May 2010) So, nothing changes.

It sounds like the Ministry of Health has been running a free-for-all. They only knew about this “breach” from a whistleblower (so they say). There is a minister of health, a deputy minister, assistant deputy ministers, associate deputy minister... – and no one knows what's going on (or more likely they do and chose to have it this way). And there is no doubt this “breach” is the tip of the iceberg, since this lack of privacy protection has been going on for 20+ years. (49)

The term “breach”, has a couple of definitions. One definition is “to make an opening in” (as in a security system) But I think you first have to have a security system to “breach”. The second definition is to “break or act contrary to (a law, a promise)”. (Wikipedia) This post uses the second definition of breach. Christy Clark and other BC premiers and their lackeys, breached or contravened the privacy act, for 20+ years, by, for all intents and purposes, not having a security system and broke a promise to the people to protect their information. The fired contractors/employees were believed to have committed a breach by accessing/sharing patient information without authorization (illegally?).

So what really happened? CBC News has provided a timeline of the events but we still don't know what really happened. (55) I do know that there are only two people I trust who were involved in this whole disgraceful affair, Alana James (whistleblower) and John Doyle (former auditor general)(more information on John Doyle***). Unlike the researchers, these two came forward when the only thing they had to gain was maintaining their self-respect and integrity. And they risked losing their jobs, which they did.

But some points to consider are (note the many contradictions and outright lies in this scandalous fiasco): (40)

- The ministry did not discover the unauthorized disclosures until a whistleblower came forward, leading to a review of thousands of emails and files on the hard drives of several employees. (11) The whistleblower, Alana James, is no longer working for the government either by choice (disgusted with the way things operate?) or “let go” (government doesn't want someone who works for the people?)

- Alana James “had been raising concerns about the legality of numerous contracts the ministry had entered" "for several years before the firings“(italics mine). (25) She had contacted eight senior ministry officials about her concerns and “they were saying policy trumped the law and government could do what it wants even if it breaches the law and legislation", (bolding mine). Alana James also identifies quite a lot of concerns that the Ministry of Health did not address in their investigation. (17)

- Two of the employees settled wrongful dismissal and defamation suits out of court and were rehired (Bob Hart and Malcolm Maclure), a third employee (Ron Mattson) received an out of court settlement and an apology and retired. These settlements were done behind closed doors and with a non-disclosure clause. Bill Warburton has settled his lawsuit with the province but has filed a defamation claim against Margaret MacDermid. (43, 9, 44) Dave Scott and Ramsay Hamdi remain fired. Roderick MacIssac committed suicide. (12,18, 45, 46). Rebecca Warburton has her case before the courts. Why were the non-union employees rehired/retired (except Rebecca Warburton) but the two union people were not rehired and yet not charged with an offence/crime? (13) A source claims the non-union employees threatened to tell what is really going on (bolding mine). (23) Is there something that prevents union employees from doing the same thing?

- The firings were done by Graham Whitmarsh, deputy health minister “on the first day that Margaret MacDiarmid was health minister”. (12) She replaced Mike de Jong who was moved to the Finance Ministry.(20) What interesting timing! Did Christy think he was too much of a political asset to take responsibility for his actions (or lack of actions)? The breaches happened on his watch, the initial investigation which led to the suspension, and later firing of seven employees occurred on his watch and the lack of overall privacy protection continued on his watch. Now, it appears, he ran and hid in another ministry. Isn't that called being a coward? And, he can claim that he “can't comment” on what is going on in another ministry and MacDiarmid can claim that she was not minister at the time it happened so she can't answer what happened.

- Mike de Jong said about the situation: “"it's disappointing, it's troubling." "One of the things I as health minister had endeavoured to promote is responsible access to the treasure trove of data we hold as a society with a PharmaCare program"; (20) "It's not clear at all to me and I don't believe it's clear to anyone as to why this happened," said MacDiarmid.(5) Now that they have had time to read the privacy commissioner's report perhaps the ministers could explain what they do to earn their large pay-cheques, expense accounts and golden pensions. Imagine if a bank was robbed and an executive said “I didn't know there wasn't any security” or “we had no security because we expected everyone to be honest.” How long would that executive be employed? So, are they incredibly incompetent, liars or both?

- We have paid for an internal investigation, RCMP responding to claims of an investigation (a non-existent investigation), a privacy commissioner investigation, a University of BC investigation, and possibly a University of Victoria investigation, settlements to fired employees, a pending court case, 37,000 notifications of the breach, $1.1 million (or $950 per phone call) to Maximus for a toll-free call centre, $400,000 in severance payments to Graham Whitmarsh (18) and on and on. “It is worth noting the high costs of such after-the-fact privacy breach management as opposed to investing in comprehensive privacy and security risk management up front. Senior management time is an especially high component of this burden.” (11) I think the management should have worked for free, then been fired. But no management has been held responsible for the “breach”, for the lack of privacy protection and there has been no accountability. Whitmarsh was fired, without cause, with a $461,643 severance package. (55) The citizens, will just work a little harder, work a little longer, or do without to pay for the useless, incompetent, self-serving politicians and their toadies.

- “The Ministry believed the research credentials of the individuals involved suggested that there was little risk for misuse” of patient information. (11) How convenient. Excuse me but aren't these the people who, “without authorization” (illegally?) requested, shared and accepted confidential patient information!!!

- Health Minister Margaret MacDiarmid said “We want the data back” (1). How stupid can you be (but I guess it sounds good in the press). You don't get it back especially after several years. Once it's out there, it's out there. “In attempting to contain the breaches, the Ministry had to rely on declarations from the employees and contracted researchers under investigation that they did not have any Ministry information stored outside the confines of the Ministry.”(11) In other words, the Ministry is, again, relying on the word of people who had “without authorization” (illegally?) given and accepted identifiable patient information. One person said they had deleted the information from their hard drive. But, my understanding is that if information is transferred onto your computer and then deleted, it is not totally gone, unless the hard drive is wiped clean. I doubt very much if that was done. Also, these systems usually have at least one backup. This shows, again, that the ministry has no idea (or doesn't care) how our information is accessed or shared.

- “Jim Wright, the managing director of the University of B.C. pharmaceutical research group” said people working with him “only get fully anonymous data, making a privacy breach impossible”.(33) The Privacy Commissioner's report said a contractor (doesn't mention which university) “requested that the personal health numbers (PHNs) be masked or removed, as the testing process did not need such sensitive personal information.” (11). This seems to imply that the norm is to give the information NON-anonymously.

- The press keeps repeating, or paraphrasing, the MacDiarmid statement that “there was no evidence that anyone had benefited financially from the breaches and that the data had been used for nothing other than public health research”.(36) This is misleading at best. What isn't being said is that there was no evidence that anyone hadn't benefited financially or that data had not been used for purposes other than public health research. The government was so mismanaged (intentionally or just incompetently) that they had no record of what was happening to our information. They only became aware of two cases of “unauthorized” (illegal?) access/sharing (or so they say) because the employee's accessed and shared the information after they were told that they were being investigated. (11, 30) Presumably, they found our about the 2010 “unauthorized” access/sharing by stumbling across some emails.

And, do you really believe that in 20+ years no one personally benefited from sharing our information, especially when there was virtually no chance of getting caught. Just think of all the people/organizations who would willingly pay a lot of money for this “treasure trove” of information. Example, “records were allegedly stolen from two Toronto hospitals and used to market registered education savings plans to new mothers.” (34) Just because a criminal has not been caught or convicted (see prior post “Nurses”, Nov. 12, 2008) does not mean a crime has not happened.

- “The Ministry convened a news conference on January 14, 2013, to inform the public of details of the breaches (three months after the September 2012 announcement, and 10 months after being notified of the breach, or so they say). It mailed letters of notification to affected individuals (approximately 37,000) in batches over five days starting on January 16, 2013. The Ministry made use of a website and a toll-free call centre to make additional information available to affected individuals”. (11) A lot of people would not have known about the unauthorized access/sharing, especially if they had left the province. But presumably the turdits didn't want to mail out over 4 to 5 million notifications. And how much personal information was a person required to give the foreign-owned call centre, and their probably low-paid employee's, to get scripted answers?

I also find it interesting that the media labels this as a ministry firing scandal and not as a ministry privacy violation scandal (of epic proportions). Is this because it's so shocking that someone would get fired for violating our privacy but the massive violation of our privacy is so common or is this to deflect attention away from the 20+ years of privacy violation?

Dix, and others, including the media, have also portrayed this as the government making up a fictitious situation to close down the Therapeutics Initiative. He implies that the people involved are innocent. Therefore, he is implying that Alana James is lying, that the Privacy Commissioner is lying, that information was not transferred “without authorization” (illegally?), and that the union was incompetent because they couldn't protect innocent union members. Maybe this is a distraction, a red herring because he can't condemn the essentially non-existent protection of our information because both the NDP and Liberal governments have allowed the medical business to ignore FIPPA, to lie about the protection of patient information for 20+ years. Although I do wonder if having an essentially non-existent security system makes it easier to get information to their friends (party contributors). Is this how they get the large pharmaceutical companies to locate in BC? (21) I've read that the collusion between government and Big Pharma borders on criminal.

Do these comments sound like we were dealing with innocent people? Does it sound like these people have any remorse for what they did/are doing? Alana James said that the ministry was making data disclosures, which were illegal, to outside researchers every week. (17) And, "I have been told things such as: I don't understand how government works; that it doesn't matter what the legislation says, we have government policy; that it's unfortunate that we don't follow the law but that we plan on changing the legislation at some point so that we will (bolding mine)."(28) “Moreover, they'd been doing the job the same way for years with the approval of their superiors. 'There was a whole chain of command that knew what I was doing,'” one of the people fired said. (14) Dix said the government ”targeted a small group of people who were acting in ways that were well known and accepted in the ministry”. (25) But that doesn't make it legal or acceptable. If you hit a person because you were told to, does that make you any less guilty of assault? I believe that just makes you both guilty. It's just a question of exactly WHO is guilty. And it also indicates the complete contempt the politicians and their toadies have for the law. (41)

Also, it's possible that Dix's is just trying to brainwash people into believing that the medical/research system is trustworthy so people will be gullible enough to continue to give personal information to be sold/traded/bartered to all their political friends.

Dix's is calling for an investigation, which should happen, but it's a safe demand because, with a Liberal majority, it won't happen.

It appears that the only investigation into what happened was a review by the health ministry in 2014. However, this review was only focused on policies and procedures on how the public service responds to allegations of employee misconduct, not on the actual decisions themselves, not on who fired whom and for what reason, or who wrote deficient contracts. (18) And they certainly did not investigate why the Ministry of Health didn't even have “adequate safeguards to protect personal information. The government stated that the 2014 review will not be put on the internet for privacy reasons (seems they have a sense of humour). (8) Stephen Brown, deputy health minister, was suppose to have conducted a review, in 2013, that led to the rehiring of some fired employees. However, an FOI request received a “no records” of the review response. (24) And, what happened to the information on the initial investigation, in 2012, that led to the firings and all the files that were suppose to be turned over to the RCMP. (5)

“British Columbia's Health Minister has called in the RCMP”, “last month, after reviewing the internal probe results, the ministry handed its files over to the Mounties.” (5) MacDiarmid was health minister at the time. In 2013 Lake, health minister, said they continue to share information with the RCMP... ”So it will be up to the RCMP to determine next steps based on their conclusions from the investigation." (7) RCMP had been asked to investigate allegations (22, 3, 31). A source told the Tyee "They seemed to make the decision about the fired people and told the whistleblower that if they wouldn't take the issues public they would deal with it internally but that their role was to protect the government as the employer and thus they wouldn't be pursuing people higher up." (23) The government then said that it doesn't want the RCMP to investigate. (36). Also, did you note that “their role was to protect the government as the employer”. Isn't it time that the people got back to being the employer so the people are protected? The RCMP have stated that the politicians lied, that there was no investigation and they “largely relied upon media reports to track the case”. (38) Then, Christy Clark admitted that they had “misled” (blatantly lied to) the public about the non-existent investigation for three years, but only admitted it after the Vancouver Sun released documents, obtained through a freedom of information request, incriminating the politicians. (47). If you or I lied and used the RCMP, wouldn't we be charged, at least with mischief or some such thing. So why aren't the politicians charged? And why did the politicians lie about an RCMP investigation?

“The Vancouver Sun's Vaughn Palmer revealed that the comptroller general's office has been conducting an investigation into 'suspected financial improprieties in procurement and contracting procedures in the pharmaceutical research division of the ministry of health,' since October 2012. (3) The findings are to be kept confidential except to 'assist RCMP or other law enforcement agency with a criminal investigation or prosecution.'”(28). It appears that this “investigation” is going in the same direction as the health privacy breach/firings. (39)

"What we're trying to do is capitalize on data collection that is anonymous," said Minister de Jong. "Protecting individual privacy remains a hallmark and a fundamental priority." (15) The Privacy Commissioner's office obviously disagrees, as does all the evidence. And Ministry of Health claims they didn't have the resources for protection. (11) But everyone in the health business says our information is protected. All these conflicting statements (lies). And note that they had the money for the Integrated Management System (see post of same title, June 14, 2011). So they had the money to link all our information but none to protect it. Sounds about right for the turdits.

The privacy commissioner has 11 recommendations. Do you really think they will be implemented? Freedom of Information and Protection of Privacy Act (FIPPA), which governs public bodies, came into effect October 1993. So, it's been 20+ years since this privacy act came into effect and obviously they have ignored it so far. The privacy commissioner also claims that the Health Ministry is “fixing” things. But, of course, she only has their word, which hasn't been worth a damn for 20+ years. They quickly came up with millions to “contain” the “unauthorized” (illegal?) access/sharing. And, suddenly, there was no problem coming up with the money to “fix the system” now that they had been “found out”, or so they said. PROVE IT.

The government has looked into joint medical research with India (32) and has held workshops to encourage “BC researchers to compete for contracts from the United States military”(35) and were in discussions to sell (openly/legally) our information (36); that was “officially” suspended, but for how long. So all the people in foreign countries will have our information, if they don't already have it. And it will be identifiable because we know the government/medical business make a mockery of the word “anonymous”.

And they passed Bill 35 which is pharmaceutical legislation to increase use of patient information with reduced accountability, including sharing our information outside of Canada. (15, 37) (also see post “Bill 35 – Pharmaceutical Act” 25 Sept. 2012).

Now the turdits are going to do another “investigation” to quiet all the questions around this sordid affair. BUT it will be done by the Ombudsperson, Jay Chalke, who isn't qualified to do it and is subject to many restrictions. Also, it will be done behind closed doors. (50)(51) They claim that it would be too expensive and time consuming to have a public inquiry. Which is more expensive: a useless investigation by the Ombudsperson, designed to be a whitewash, or a REAL public inquiry, designed to get answers.

The fired people, plus Roderick MacIssac's sister, have issued a letter requesting a public inquiry. I find this more than a “bit” hypocritical coming from those (not MacIssac's sister), who had an opportunity to get this into the open by going to court but instead settled behind closed doors, with a non-disclosure clause. Are some of them doing a “Dix” (including Graham Whitmarsh), demanding a public inquiry, because it makes them look good, when they know it will never happen? However, the points they outline in their letter regarding why there needs to be a public inquiry are valid. (42, 53)

But, even with a public inquiry you need people with some ethics, integrity and moral fibre, to tell the truth and not just lie, or a damn good lawyer who can get to the truth.

More importantly, B.C.’s former auditor general says the government needs a fully independent public inquiry into the firings of health researchers because allegations of improper activities go all the way up to the politicians.

“John Doyle, who received the whistle-blower’s original complaints that led to the government’s investigation in 2012, said appointing the Ombudsman to review the case would be a 'waste of time' because it would too limited to capture the full scope of potential problems.

'My view is that this isn’t just about a few people in the health department,” he told The Vancouver Sun in an interview Thursday.

'The information that we were getting covered a lot of government and a lot of behaviour right up to the political levels. Some of the issues also involved the Ministry of Justice, said Doyle, where Jay Chalke worked as a senior official for the past four years, before starting as Ombudsman Thursday. The government is poised to appoint Chalke’s office to look into the matter. He shouldn’t be involved, said Doyle. 'If they are going to narrow the inquiry right down to looking at the firings, then it doesn’t matter who does it because it’s a waste of time anyway,' said Doyle. They've done that to death already. It’s really about the patterns of behaviour, the movement of funds, the decision making that was going on in regard to quite a range of different activities, and the interaction with senior politicians (bolding mine).' Doyle suggested a corruption commission model used in Australia, where he is now the auditor general for the State of Victoria. 'I believe the agenda is going to be swung towards the seven or eight people who were fired. And really that’s a smokescreen. Some of them were right in the middle of it but some of them were in the periphery. The big things occurring outside the health ministry were some more senior people and a lot of, as I said, politicians involved in the process as well (bolding mine).' “ (49)

An Aside: John Doyle and Alana James married and are living in Australia. I am happy that two such people with ethics, decency, integrity, and bravery got together. Congratulations to Australia for getting our best. And BC gets left with the scrapings of humanity.

In addition, David Ostrow violated the privacy act (see post Auditor General – PARIS report, May 24, 2010), de Jong was in charge when the recent health violations occurred and the health ministry violated the privacy act, Margaret MacDiarmid lied about the RCMP (and gawd knows what else) and Terry Lake continued the lie(s), and these people still work in the government. In fact, MacDiarmid was fired by the people when she was voted out of government in the last election but Christy flipped the citizens the finger and gave her a job on the Vancouver Coastal Health Authority board. That tells me that all of this is run from the top of the dung pile. Whatever Christy is hiding, about what she/they are doing to us, must be pretty damning. WHAT ARE THEY DOING TO US!!!

Plus, "The deputy minister of health sent an email yesterday to all staff in the ministry asking them not to delete or destroy any records related to the 2012 firings that the provincial ombudsperson is investigating", at the request of the ombudsman. "Health policy researcher and author Alan Cassels said that it's odd that Brown would be reminding people to keep records three years after the firings were made. 'The horse hasn't just escaped from the barn, the barn's burned down,' he said. Despite numerous requests to the government since 2012 for information about the firings, little that's substantial has been released, Cassels said. 'To be told there aren't any records, it stretches credibility to the breaking point. You just can't believe them.'" (52)

If the NDP were to get "in power", do you really think they would have a full public inquiry of the scandal? I don't. They would cover for their compatriots as they would expect their compatriots to cover for them, not to mention that the NDP are likely just as guilty.

The reality is that the only people who can call a public inquiry and get the truth out in the
open are the accused (the politicians and their lackeys), and obviously they are not going to
do it. We have no means to hold the government accountable -- do you call that a democracy?

So, sit back folks in BC and start counting the millions more that will be wasted in the charade, all to cover up what the politicians are doing to the people. I have no doubt that the politicians, and many others, know exactly what happened and why. But, the people can just work harder, or work longer to make up the millions, or do without. The people doing without will be the children, the homeless, the disabled, the aged .... but the politicians don't care.

Lies, lies, more lies, constant contradictions and cover-ups. It isn't just a case of breaching security measures, it's a case of not having security measures. It's a case of intentionally violating the privacy laws for 20+ years. Common sense indicates that the “unauthorized” (illegal?) access/sharing we hear about are just a tiny fraction of the violations of our privacy.

It's a culture of secrecy, of lies, of deviousness, of corruption.... and the culture is set at the top, at the Premier's office. And followed, blindly, by her toadies, with the rare exception of someone like Alana James, someone who has ethics, morals, and a backbone. This attitude (contempt, disrespect) toward the people and this “government/medical” sense of entitlement is the core problem. And until that changes the privacy situation won't get any better.

I might not mind my information being shared with researchers if I believed they had my back; If patient information was not being protected, that the researchers would make that known. But they don't (see future post “complicit”) . I have not heard of one person, in 20+ years, speaking up (Alana James was not a researcher). The first rule in medical research should be to protect the patient's rights and confidentiality. Currently, this is either their last rule or not even on their radar. Yet these are the people the privacy commissioner tries to portray as paragons of virtue. You would think these researchers would speak up, or otherwise let it be known, as a matter of professional integrity. Plus, “Government employees are sworn to uphold Standards of Conduct as explained by a policy statement which clearly states: 'Employees have a duty to report any situation relevant to the BC Public Service that they believe contravenes the law, misuses public funds or assets, or represents a danger to public health and safety or a significant danger to the environment.'” (21) But they don't care about us. Another government/medical business contradiction, and meaningless words on paper because the only person to uphold the Standards of Conduct is no longer with the government/medical business.

It doesn't matter what the medical/research people are doing. The ends do not justify the means. Under no circumstances should they have the right, or sense of entitlement, to treat us like lab rats, a commodity to be used and abused as THEY choose, with no accountability or transparency to the citizens, much less real consent by the patients.

But, all we see here is the scorn the medical/research/government people have for the citizens. And they expect us to trust them. In my opinion, you would have to be brain-dead, or a masochist, to voluntarily give these people any information. They have lost all credibility, all trust, all respect.

WHAT ARE THEY GOING TO DO WITH CORRUPTED INFORMATION

WHAT ARE THEY GOING TO DO WHEN THEY WANT SOMETHING, FROM SOMEONE LIKE ME, THEY CAN'T STEAL. (see future post “My Story”);

*This date may be not be correct due to another government “inconsistency”.

** This number has varied between 4 million and 5 million. So, presumably the government doesn't even know how much information was “shared”. Any number over the current population could be due to including the information of people who have left the province.

***Champions are hard to find, harder to keep, 06 Feb 2013, Burnaby Now (Our View); Keeping Accounts, 10 Apr 2013, Newsleader (Newsleader's View); Expense cleanup must continue, Tom Fletcher, 12 Jun 2013, Black Press; also see posts “Auditor General – PARIS Report”, 24 May 2010 and “Auditor General”, 10 Jun 2011 and “Auditor General John Doyle”, 13 Apr 2013; Protect whistleblowers to protect public good, 12 Dec 2012, Burnaby Now (Our View)

1. Health data of millions breached - Tyler Orton, 13 Jan 2013, 24 Hours

2. Protect personal health info with security measures: privacy commissioner - Camille Bains, 26 June 2013, The Associated Press

3. Vaughn Palmer: The plot just thickened on those mysterious government health firings - Vaughn Palmer, 15 Oct 2014, Vancouver Sun (a paper I didn't buy)

4. Policies tightened on pharmaceutical deals - 6 Sep 2012, 24 Hours

5. B.C. Health ministry says RCMP called to investigate conflict allegations - Dirk Meissner, 06 Nov 2012, The Canadian Press

6. B.C. Health ministry suspends workers over privacy breach - Jonathan Fowlie, 14 Sep 2012, Vancouver Sun

7. Protect personal health info with security measure privacy commissioner - 26 Jun 2013, The Canadian Press

8. Fork over Full Health Firings Findings: Dix - Andrew MacLeod, 12 Jan 2015TheTyee.ca

9. Health Worker fired to Protect Liberal Donors, Suit Alleges - Andrew MacLeod, 07 May 2013, TheTyee.ca

10. Health Ministry Firings Review an 'Accountability Gong Show,' Says NDP - Andrew MacLeod, 22 Feb 2014, TheTyee.ca

11. Investigation Report F13-02, Ministry of Health - Hamish Flannigan and Pat Egan, 26 Jun 2013, Privacy Commissioner's Office

12. Fired Researcher Who Killed Self Was Evaluating Drug Backed by Clark - Andrew MacLeod, 03 Oct 2014, TheTyee.ca

13. Health Ministry Mum on Fired Worker's Rehiring - Andrew MacLeod, 07 Mar 2014, TheTyee.ca

14. 'I Thought I Was Doing a Good Job': Fired Health Ministry Staffer - Andrew MacLeod, 12 Sept 2012, TheTyee.ca

15. Privacy Commissioner to Health Minister: Whoa! - Andrew MacLeod, 3 May 2012, TheTyee.ca

16. Taxpayers Dinged for a Thousand $1,000 Phone Calls - Andrew MacLeod, 16 Jan 2014, TheTyee.ca

17. Emails Shed Light on Origins of Health Ministry Probe, Firings - Andrew MacLeod, 21 Oct 2014, TheTyee.ca

18. Former Official Fears Blame for Health Ministry Firings - Andrew MacLeod, 20 Nov 2014, TheTyee.ca

19. Health minister MacDiarmid confirms fifth firing morning after - Andrew MacLeod, 14 Sep 2012, The Hook,

20. Health ministry fires fifth person in data, contract investigation, Andrew MacLeod, 13 Sep 2012, The Hook

21. The best place on Earth (for pharmaceutical companies) - Alan Cassels, Mar 2013, Online

22. Research Stopped by Ministry Might Have Cut Big Pharma Profits - Andrew MacLeod, 8 Sep 2012, TheTyee.ca

23. Key Health Ministry Advisor Was Surprised Firings Targeted Just 'Low Level People': Emails - Andrew MacLeod, 6 Nov 2014, TheTyee.ca

24. 'No Records' of Requested Health Ministry Review - Andrew MacLeod,16 Feb 2015, TheTyee.ca

25. What We Know So Far about the Health Ministry Firings - Andrew MacLeod, 19 Dec 2014, TheTyee.ca

26. Former Senior Gov't Official Won't Participate in Health Firings Review - Andrew MacLeod, 25 Nov 2014, TheTyee.ca

27. Health ministry lacked means to protect personal info - Andrew MacLeod, 26 Jun 2013, The Hook

28. VIEW: Time to appoint a special prosecutor on healthcare firings - Andrew MacLeod, 27 Oct 2014, The Hook 29. Health research scandal still shrouded in secrecy - C. McInnes, 15 Dec 2012, Vancouver Sun (a paper I wouldn't buy) 30. Fired BC Health Worker Sues Province - Dirk Meissner, 04 Dec 2012, The Canadian Press 31. Police Called, then Stalled on Health Firing Probe - Andrew MacLeod, 19 Feb 2015, TheTyee.ca 32. Asian trip's aims include medical tourism and shared research - Andrew MacLeod, 04 Nov 2011, TheTyee.ca 33. Lack of drug data is blocking important research - Andrew MacLeod, 12 Sept 2012, The Hook 34. 34. OSC lays charges in patient records privacy breach at two Toronto hospitals - Diana Mehta. 02 Jun 2015, Chronicle Journal: Health 35. BC Medical R esearchers encouraged to seek US military funding - Andrew MacLeod, 12 Oct 2012, The Hook 36. At Time of Firings, Health Ministry Discussed Selling Patient Data - Andrew MacLeod, 20 Mar 2015, TheTyee.ca 37. Bill 35 – 2012 – Pharmaceutical Services Act, passed May 31, 2012 38. RCMP probe of fired B.C. Health workers never happened - Rob Shaw, 05 Jun 2015, Vancouver Sun 39. Health Ministry Firings Police Probe Still Possible - Andrew MacLeod, 04 Jun 2015, TheTyee.ca 40. Letter Shows Discrepancy in Gov't Version of Health Firings - Andrew MacLeod, 3 Feb 2015, TheTyee.ca 41. On Health Ministry Firings, Who Actually Received an Apology? - Andrew MacLeod, 9 Jun 2015, TheTyee.ca 42. Wrongly Fired Health Workers Sign New Demand for 'Thorough' Inquiry - Andrew MacLeod, 24 Jun 2015, TheTyee.ca
43. Fired drug researcher drops lawsuit against province - Cindy E. Harnett, 5 Jun 2015, Times Colonist 44. Victoria drug researcher wasn't silenced, B.C. Government says - Cindy E. Harnett, 29 May 2015, Times Colonist 45. Fired researcher's sister seeks answers in report due today, Cindy E. Harnett, 18 Dec 2014, Times Colonist 46. Fired Researcher's 'Last Words' Deleted from Computer, Sister Says - Andrew MacLeod, 8 Jul 2015, TheTyee.ca 47. Christy Clark: Government has apologized for misleading public over B.C. Health firings - 05 Jun 2015 , CBC News 48. Is Health Firings Probe Doomed to Be Too Narrow? - Bob Mackin, 15 Jul 2015, TheTyee.ca 49. Independent inquiry urged into botched health ministry firings - Rob Show, 2 Jul 2015, Vancouver Sun 50. Ombudsperson Pleads for Delay to Health Firings Probe - Bob Mackin, 16 Jul 2015, TheTyee.ca 51. Editorial: Inquiry must be independent - 4 Jul 2015, Times Colonist 52. Health Ministry Asks Staff Not to Delete Records Related to 2012 Firings - Andrew. MacLeod, 24 Nov 2015, TheTyee.ca 53. Wrongly Fired Health Workers Reject Ombudsperson Review - Andrew MacLeod, 28 Jul 2015, TheTyee.ca 54. Many Theories, No Answers from BC Gov't on Health Ministry Firings - Bill Tieleman, 23 Jun 2015, TheTyee.ca 55. B.C. Health researcher firing scandal timeline - Jeremy Allingham, 13 Jun 2015, CBC News

December 23, 2015

WHAT CAN YOU DO - POLITICAL

I have heard people ask what they can do. Politicians (past, present, future, wannabes) need to know that when they lie, steal, con, destroy our democracy, freedoms, and rights, there are consequences. So, here are some suggestions:

Smaller Things

- If I unexpectedly encounter a politician, or any member of their family, I turn my back on them and walk away.

- I try to avoid any event where the turdits will be. Or if I feel a need to attend, then, when the turdit speaks, again I turn my back and walk away until they are finished with their self-serving, campaigning, talking points. - I will not serve on any board or committee that has a politician or a member of their family. - I try to avoid purchases from company's owned by politicians and their family members. For example, I never ate at an A & W because I knew at least two were owned by a politician, but I didn't know which two. - I try to avoid purchases from large corporations that hire politicians or their family members. If I think I need something from one of these stores then I first consider if there is an alternative method (ex DIY product), can I do without or buy second hand, etc. And, for example, I did not listen to a certain radio station that hired turdits. - And I do not join organizations (usually non-profits) run by politicians. They use others (the slaves) to do all the work while the politician gets the attention. They don't care if their organization accomplishes anything because it's primary purpose is to get the politician attention - I won't take a course, etc. taught by a politician

                                                                                                                                                                   - And I don't buy their books, although I may read it in the library to see if it is a white-wash. I don't fall for that “Oh, now that I am out of politics, I see the error of my ways and besides I want to make more money off the suckers called citizens".

- You could start a website that lists where the politicians get there next job, directorships or other remunerations/gifts, and companies they own.   When a politician has been hired by a company it says a lot about the ethics and integrity of the company so I don't purchase their products or I minimize what I do buy. Plus the job may have been paid for by the people, if the politician gave the corporation “special consideration”.                                                                                                                                                          - You could have a protest at election time to let politicians know you are not voting for them because they don't deserve your vote so politicians can't use the line that the people are just apathetic. Or start the “Do Not Vote” party for all those who are offended by the political options and peopIe can sign their name, on election day, at the party's site

- You could start a website the allows people to input their ideas on what we can do.                                                                                                                                                                                   - You could start a website that tracks what politicians DO, not what they say (thanks Lynn)

Bigger Things (or Overall Change)

The system is broken. We need, as a group, to fix it. Eventually intelligence or disaster (and I expect it will be the latter) will force people to make a change. We need to be prepared to provide an alternative system or nothing will really change, except the faces.

So I suggest that someone(s) set up a website (people with more advanced tech skills than mine) to allow people to input their ideas for a new governing system; a system that gives the people control. Someone(s) with no agenda but to find a real democratic system. We will need to know who runs the website so we can be sure that it isn't one of the politicians, their friends or their shills

We can create a framework and start to fill in the parts. I think of it like a puzzle, but with parts (or pieces) that may be interchangeable, that may be modified, or removed as circumstances change and as we (hopefully) evolve.

We can start groups to discuss new ideas or ideas listed on the website, research and submit ideas, and how they can be implemented, or we can do this individually; You can network with other groups/individuals to “brainstorm' new ideas. You can also recommend books, websites, etc. for others to review, how-to's, information, definitions, maybe like-minded people getting together to do something specific, etc. In essence, identify what we want, what routes are available to get there, and what can we do now.

I've heard that the Yukon, Nunavat, and the Zapatistas have interesting systems. Some elements may be worth considering.

I have heard that there were democratic societies but they were destroyed by the 1%. If this is true then we may not have to reinvent the wheel. But we will need to know about these societies.

We need to have a say in what is happening to us and our country all the time, not just some phony vote every 4 or so years. Some people suggest direct democracy - voting issue by issue; others claim this would be time-consuming. But would it be time-consuming if something actually got done? It seems, right now, we just keep going over the same issues, nothing gets solved, nothing gets accomplished; the children are not being cared for, the homeless are homeless, our industries are disappearing, jobs are disappearing, the environment is not being cared for. Maybe we just need a REAL plan, an ability to hire the most qualified people in Canada and then the issues would be fewer.

Also, I wonder if there is a way of organizing society in a horizontal, sharing method vs the vertical, hierarchical, power structure that we now have; a web-like organization, with people operating in different “nodes” to reinforce the interconnectedness and reduce/eliminate power struggles. I have seen concepts of this but not in terms of overall society. Perhaps this could be discussed if a website is setup or, if it has already been discussed, that could appear on the website for discussion with other ideas.

A suggested way to start:

Stage/Step 1 – Knowing that what we have doesn't work

Stage/Step 2 – Ask questions – what do we want, what don't we want,

Stage/Step 3 – Research other systems, including small groups of people that may have a workable form of democracy.

Stage/Step 4 – We need some standard information but also some “out of the box” thinking. Read/study on creative thinking, how to think outside the box, brainstorming (or just do it) and then use that to generate new ideas. When brainstoming, any idea is a good idea no matter how strange it may seem. It's to be decided later if all, or a part of the idea, fits into where we want to go or maybe the idea will be useful at a later time.

Stage/Step 5 – Create a framework of a system or more than one and later decide which is preferred. A system that allows for changes. Our current system is too rigid and serves the wrong people.

Stage/Step 6 – Work on details, see the effect one thing has on other things that have been determined to be important to people's lives, work on compromises for contentious elements. Determine if step 5 meets our (all life forms/the planet) needs. Each step will likely require going back and revising one or more parts in prior steps and moving forward again and you keep doing this until things fit.

Stage/Step 7 – Implement. This will likely have to be done in a mixture of small and large steps working around politicians and their friends. These people will do everything they can to disrupt and destroy this process because it does not serve them. What will they do without the slaves? What will they do if they can't think themselves “better” than other people?

Stage/Step 8 – Adjust what doesn't work or start again. At least this time we will have a clearer idea why something does or does not work. And it does need to be a system where NO ONE, NO GROUP can be in control because these people will corrupt the system until it only serves them. And this must be a system that can evolve.

And, of course, when the website is setup you have to let people know it's there.

I believe that this has to be a Canadian effort for Canada. This does not mean that foreigners cannot input ideas. But they have to be identified as foreigners. We need to know what is wanted by Canadians for Canada. Others can use it as a template to change their system if they choose.

If we know where we want to go, we can figure out how to get there and the trade-offs and we can keep doing this with every issue. Right now we have no idea what is happening because of the lies and the culture of secrecy

If we create a vision forward, a plan, maybe Canadians will build/create it, one step at a time; a plan which includes all Canadians, which gives them a voice, a REAL role in their own governance. At the very least we will have an backup plan WE WANT, “when we decide we need it”.

It can be done but it requires work and time. There are groups/websites, etc. with ideas on how to save the environment, on the economy, on so many things. But nothing can change with our current system because the politicians and their friends won't allow it. Now we need grassroots to design a new system. When change happens will we be ready for it or will we, in desperation, take whatever is offered to us or forced on us?

There is a cost to doing nothing. So, the real question is - Is saving the life forms, the planet, having a real democracy, ending our enslavement, poverty, and so on, worth it to you???

"You never change things by fighting the existing reality!
To change something, build a new model that makes the existing model obsolete!"
-- Buckminster Fuller

If anyone creates any of these websites please let me know. You can reach me at the comment section of my blog or my email: searcher@teksavvy.com.

December 22, 2015

FACADE ORGANIZATIONS

I'm adding this because I think I think it exemplifies the obstructionism we face. And, to inform people who haven't encountered them, or didn't realize that was what they were/are doing. And to let others, who have dealt with these people, know that they are not alone. These examples also illustrate that obstructionism is part of the culture in the government, including the medical system.

a. Privacy Commissioners Office: After moving, I looked into opening an account at the Bank of Nova Scotia. I ended up writing to the Privacy Commissioner regarding, what I considered to be, excessive information requirements. For example, the bank wanted the names of all my family members (wouldn't that be a violation of their privacy?). The question was whether this bank was allowed to “demand” (i.e. no choice) this information in order for someone to open a basic bank account, The Privacy Commissioner told me that I had to contact a number of others first. I had already contacted the president of the bank and received a non-answer. It didn't fall under the mandate of the bank ombudsman. The Financial Consumer Agency of Canada said they would look into it but I would not be informed of the result. Then what is the point of looking into it and why can't I be informed? As far as I know the staff at the Financial Consumer Agency just went back to sitting on their butts, doing nothing but sticking their hands in our pockets.

So back to the privacy commissioner. First I received a response from Nicole Menard telling me that the bank had the right to ask the questions. Her decision was based on the Canadian Bankers Association website “Opening a Bank Account.” I read it and it said that you were only required to provide two pieces of identification. I pointed this out to her and asked to have someone else review the file.

So, next I get a letter from Christina Derenzis who tells me that she has reviewed my file and that I have to contact the Ombudsman. I told her that if she had read my file she would know that I had already done so.

Next, I am contacted by Kyle Larsen. He wants to start the process at square one and ask the Bank of Nova Scotia the same questions I had already asked and would I like them to contact me directly. No, I said; been there, done that. I wanted to know if they had the right to demand this information. I sent this letter in August. I sent a follow-up letter in October pointing out that I had not received a reply. I sent an email in November, again pointing out that I had not heard from him and threatened to go to my MP (it appears there is a use for an MP). He responded and is now working on my case (so he says).

Even if the privacy commissioner agrees with me, NOTHING will happen. But this is the set-up. They run you in circles and do NOTHING. The only reason I filed the complaint with the privacy commissioner's office because, if the the Bank of Nova Scotia has violated my rights as I suspect, then I want it on record. If the privacy commissioner's office decides the Bank of Nova Scotia has not violated my rights, I want that on record as well.

An Aside: I opened an account with a different bank and the bank manager said they didn't share my information. I said except with their associates, suppliers and so on (and whoever they share our information with). And she said “but we don't share it with, ummm”, she thought for a moment, “with 7-11”. That did make me feel so much better (sarcasm alert).

About ten years ago I filed a similar complaint with the privacy commissioner, but regarding the Royal Bank. The privacy commissioner did an investigation and found the bank had violated the Privacy Act, the Bank Act and I think another act. As far as I know, nothing changed with the bank but at least the privacy commissioner did an investigation and I knew that what was being done was illegal. Then again, maybe something did change. Maybe the government decided they needed to protect their friends and implemented an obstructionist policy regarding any inquiries.

b. Then there are the federal integrity commissioners. Christiane Quimet, first, and Mario Dion (1, 4, 5), second integrity commissioner in a row accused of incompetence and mismanagement. This office, created by the Conservative government, “is supposed to protect public servants who blow the whistle on wrongdoing within the federal government”. (1) “He (David Hutton) said Ouimet and Dion are both lifelong bureaucrats who come from a culture where protecting those above you is a career-enhancing prerequisite. (1)

“Now you’re putting these people in a position where their job is to expose wrongdoing which will embarrass their deputy minister and departments, if it’s done properly,” said Hutton.” (1) So, Wouldn't it be better to have a citizen committee(s), not appointed by the politicians or their lackeys, select the commissioners.

Sheila Fraser, auditor general, audited Ouiment and “also found Ouimet was bullying her staff, sometimes yelling and swearing at them in public”. (2)

“During her three years on the job, Ouimet investigated only five of the more than 200 complaints her office received, and never produced any recommendations or findings of wrongdoing committed against whistleblowers. (2)

In addition to three years of wages and benefits for doing apparently virtually nothing, Christiane Ouiment was paid $500,000 of our money when she was forced to resign in disgrace (isn't this called fired). (Do you get paid to quit a job/fired, especially because you failed to do your job).

“But since Ouimet was an officer of Parliament and not beholden to the government, opposition MPs are now wondering why the prime minister was the one to buy her out.”

“'Why does the prime minister get to decide?' asked Liberal MP Navdeep Baines, adding Ouimet's closeness with the government, "puts into question her independence as well.

'Why was the prime minister's office and his department (the privy council) interfering with her independence, and why did she receive half a million dollars to walk away?'” (3)

I am pleased to hear that over 200 people, in about three years, in the federal government are courageous enough to become whistleblowers. It is always disappointing, of course, that it's necessary and that nothing is being done about it because the politicians have created fake organizations.

Remember we pay for all these sham organizations who treat us with contempt.

1. Auditor general: 'Gross mismanagement' in files handled by integrity commissioner, Bruce Cheadle, 15 Apr 2014, Toronto Star.

2. Former integrity commissioner ignores summons, again, 08 Feb 2011, Toronto Sun

3. Ouimet calls AG's 'special' audit a personal attack, Bryn Weese, 10 Mar 2011, Toronto Star

4. Canada's integrity commissioner should be fired,Guiseppe Valiante, 15 Apr 2014, Toronto Sun

5. Integrity Commissioner Dion should be replaced, Allan Cutler, 14 Apr 2014, Canadians for Accountability

December 21, 2015

WHY I DON'T VOTE (Also see prior post “Not Voting” April 11, 2013 for Part I)

I include in the definition of a politician those who are past, present, future and wannabe politicians. A politician is not what you do, it is who you are as a human being – liar, thief, con, destroyer of democracy and freedom, parasite, and so on.

Not voting does not mean doing nothing. See future post “ What Can You Do – Politicians”; Some may choose to vote while still working on changing the system. I even made an exception to not voting in the last federal election because I wanted Bill C-51 revoked and a proportional representation system. But this is probably wishful thinking based on lies by the turdits. (In reforming electoral system, parties favour what benefits them most, Campbell Clark, 29 Jul 2015, The Globe and Mail).

I checked the box “Do Not Add to Register of Electors” so my information would not be shared with political parties and all my information is deleted after the election. But this is another government farce because inside scrutineers can add to their list any names they don't already have and share with outside scrutineers. They can use it for the next election or sell it or whatever they do with this information (see prior post “BC Bill 20).

I will also be sending a letter to the province and municipality to have my name kept off the voters list. If I choose to make an exception and vote, I can always register. But first I have to find out what “triggers” get my name on the voters list, for example does making any change on your driver's licence act as a trigger.

It's sad that when you do vote you have to hold your nose and vote for the party you hope will do the least amount of damage; you can't vote for a party you think will do their best for the people and country of Canada because there are none.

Justin Trudeau got a majority of the seats, largely I believe due to strategic voting and a desire to get rid of Harper. One always hopes for the best but, in reality, a politician is a politician.

How do you get a politician? You walk behind satan and scoop up what drops out of his lower cavity. Crude but true. So I refer to these “people” as turdits (I may have borrowed this, if so thank you) and a few other words. I reserve my opinion of independents.

The turdits are why things don't get better, and in many areas, are getting worse. Can you imagine how different it would be if we had people working for the citizenry.

I don't vote because: (Note: this is for those people who don't keep up with the misconduct of, and abuse of trust by, the politicians and this is just a partial list)

1. We don't have a democracy, only a pseudo-democracy, a fake, an illusion or barely-there, non-functioning, democracy; some people call it a constitutional dictatorship. We are allowed, even encouraged to vote but “If voting changed anything, they'd make it illegal” (Emma Goldman) (We have the form of a parliamentary democracy, but not the substance – Andrew Coyne, 27 May 2015, National Post).

2. Politicians lie, steal, con, destroy our democracy, freedoms and rights. One of my other words for them is sewer trash, which is a reflection of the level of my disgust/contempt.

3. Who do you vote for? turdit 1, turdit 2, turdit 3.. They are all the same. You get really disgusted with turdit 1 in “power” and you vote for turdit 2. Then you get really disgusted with turdit 2 and you go back to voting for turdit 1. So, what has changed? NOTHING. It's just a merry-go-round. Insanity: doing the same thing over and over again and expecting different results (Albert Einstein)

4. Slavery comes in different forms but it is still slavery. This is a government run by and for the politicians and their friends, not for us We just pay their expenses and line their pockets. Politicians are part of the problem, not the solution

5. To quote commenter Mooney7 “After all they claim to rule with the consent of the governed". When I don't vote I take away my consent for them to govern. I don't enable them.

The following examples are, federally, largely conservative examples because they are the most recent and the Conservatives were “in power” for 10 years. I'm sure there is a list for the Liberals somewhere, the sponsorship scandal being one of the most notorious. We will see how many democracy destroying, and corrupt, acts Trudeau and his minions commit, or if he eliminates the abuses and corruption. Examples:

1. Politicians take away our rights and sell/trade/barter us. Isn't that what you do to slaves? Examples BC Bill 11 (which gives the Minister of Health power to collect, gather, use and share personal information without any notice to or consent from affected individuals..), BC Bill 35 – 2012 - The Pharmaceutical Services Act (see post dated 25 Sept 2012), federal Bill C-51 (the bill is a massive invasion of the privacy of innocent people), (The state gets more intrusive, again, Lawrence Martin, 17 Feb 2015, The Globe and Mail); (Privacy Commissioner Slams Bill C-51, 09 Mar 2015, TheTyee.ca); Canada's New Privacy Rights Battles, Sean Condon, 17 Jul 2013, Megaphone Magazine); Bill C-13 - the lawful access and cyberbullying bill, Bill S-4 - The Digital Privacy Act and so on (With Elections Act, Canada Slides into Ventriloquism Democracy, Michael Harris, 21 Mar 2014, iPolitics); (The Canadian Government Has Given Up on Protecting Your Privacy, Michael Geist, 03 Jun 2014, TheTyee.ca)

2. Power of the PMO (Prime Minister's Office); and I believe this would apply to the Premiers office

“the greatest threat to responsible government in Canada is none other than the Prime Minister’s Office.

The PMO uses its toxic tentacles to neutralize every part of government that might compete with it for power, so that today we are ruled by an imperial prime minister, unaccountable to anyone or anything.

Today the PMO is virtually a government unto itself.

The PMO enforces its will two ways: through the prime minister’s power to appoint and fire cabinet ministers, committee members and deputy ministers; and his or her power to approve the nomination of everyone who runs for the party. “ (a)

“It has morphed into a 90-person juggernaut of political strategists, 'issues managers' and party enforcers who exercise strict control over cabinet, the houses of Parliament and the bureaucracy.“(b)

“The PMO gains strength by weakening the institutions around it.” (b)

The Prime Minister also makes appointments ranging “from heads of agencies and CEOs of crown corporations to members of quasi-judicial tribunals” (Government in Council Appointments Overview, Government of Canada). In other words, “all national positions of consequence are appointed or approved personally by the prime minister” (Canada Needs Proportional Representation Now, Rafe Mair, 05 Jan 2015, TheTyee.ca). The PM selects judges usually from “recommendations made by the 17 Judicial Advisory Committees across Canada” (Ottawa picks gay marriage critic to sit on Ontario's highest court, Sean Fine, 24 Jun 2015, The Globe and Mail). These recommendations are shortlisted by parliamentarians and then the shortlisted are vetted in parliamentary hearings but at least part of this process is being eliminated and the judges are simply selected by the PMO (Unvetted Quebec judge takes Supreme Court seat, 06 Oct 2015, The Globe and Mail). Controlling the institutions is how the PM controls the society and the people in the institutions are loyal to him.

The politicians complain about the senators and their scandals. But many, or all, senators were appointed by the prime minister of the day as a reward for past and/or future “services” to the political parties and not for what they can do for the people. For example, I read that Mike Duffy was appointed because he was a great fundraiser and speaker for the conservative party.

We could take back some of the power of the PMO by having citizen's committees, or something similar (not selected by politicians), make these appointments. Then we also wouldn't have the massive payouts to the political appointees when a new party gets in “power” and appoints all THEIR crony's or when they lose their position due to incompetency, resignation, “reshuffling or firing without cause. Example: Taxpayers dinged $1.25 million for Post-Election Pay, Bob Mackin, 24 Aug 2013, TheTyee.ca.

We need a system where we, the people, can hire the best, from across Canada, based on qualifications, not selected by some backroom turdits. Employees who can be fired, with two weeks notice, if they are not doing their job; who work for us, not to those who contribute to the turdits coffers & pockets. A system where we can make long term plans, not plans until the next election, employees who have to tell us what they are doing and who are accountable and transparent or immediately get fired. So we will no longer be ruled, so WE will be “in power”. There are lots of citizens who can draw up job descriptions and/or assess applications who are not turdits. But this will not happen while the turdits are “in power”.

October 10, 2015

B.C. SERVICES CARD

“British Columbia has one of the most valuable reservoirs of health-care data in the world (bolding mine) ... Unlike anywhere else, B.C. has digitalized records of every prescription filled by a pharmacist since 1995, all doctor billings, hospital admissions and treatments from the same period, and results of all blood tests done since 2002” (1). So, why have they been collecting all this information without our knowledge, much less our permission??

The politicians are now connecting our driver's license with our medical records and making it our provincial identification. And this is only the beginning of the linking of all your personal information to this one card. In other words, everything about you will be accessible by one card and one number and everyone to whom you show your provincial ID will know the number to use to access your information (legally or otherwise). They say that you have a choice to “upgrade” your license or not until 2018, at which time you lose the right to choose. An “upgrade” for whom? It certainly isn't an upgrade for the patients whose information will now become more accessible. How is this “smart”? Although I expect this will be an “upgrade” to all the people in the government, the researchers (many, no doubt, from multinational pharmaceutical companies) plus suppliers and everyone else who accesses our information, but not an upgrade for the patients. What is the purpose except to link all your information to one central database available to all the low-life's (see future post – our information is not protected).

Acronyms: FIPA - B.C. Freedom of Information and Privacy Association – www.fipa.org

BCCLA – BC Civil Liberties Association – www.bccla.org

ICM – Integrated Case Management

Concerns:

“..., those tasked with protecting the privacy of British Columbians say the new cards are a form of surveillance and will centralize personal data in a way that makes it attractive to hackers.”

'When you have that much information stored or linked together, it becomes much more valuable for criminals to attack,' “said Vincent Gogolek, executive director of the B.C. Freedom of Information and Privacy Association.” (3)
And it's not only outside criminals but those inside the government (see future post “Our Information Is Not Protected).

“In a statement released today, Information and Privacy Commissioner Elizabeth Denham pointed to a number of shortcomings with the plan, and called for a halt to any further expansion of the Services Card without extensive public consultations on the risks and benefits of data linkage. And while they agree with the pause, the BCCLA and FIPA say that it will take more than a public consultation to fix what’s really broken in the government’s plan.”
"This government has got to come clean on the card before we are all forced to use it," said Micheal Vonn, BCCLA Policy Director. "British Columbians have been provided almost no real information about it, and the Commissioner herself says she was only given an 'abbreviated time for review' of the program.” (4)

The ICM debacle also raises serious concerns over other government IT and identity management projects like the new B.C. Services Card, set to launch in mid-February (2013). “If we’re seeing this level of mismanagement with the ICM, not to mention other government IT programs like JUSTIN and BCeSIS, it’s a pretty safe bet we will see more of the same with the new ID cards. It’s time for a public inquiry into data linkage systems across government before more money is wasted and personal information is compromised.” (5)

See FIPA's 2010 report on Integrated Case Management, "Culture of Care or Culture of Surveillance?"

“In a legal ruling that cuts to the core of medical privacy in the age of the genome, a woman who nearly died in a Calgary house fire and is suing the landlords for negligence has been ordered to undergo testing for Huntington's disease, because if she has it, she may be entitled to less compensation.”

“Critics worry that the precedent of forced testing will enable insurance companies and employers to discriminate against people who are merely at risk of genetic illnesses like Huntington's, and they call Canada an outlier in the developed world because it lacks formal legislative protection for genetic information.” (7)

Another article states “ ...authorities are deliberating whether to allow the Chinese company to buy Complete Genomics of California, a major U.S. Sequencing company.” “ ..but the deal has officials there fretting over both the security of genetic data and national security.”

“ ...Because the technologies involved “have national security implications related to bioweapons...”. (6) Is your information being used to create bioweapons. We have no idea who is using our information or how it is being used so anything is possible. The point is that WE should know where our information is going and how it is being used.

- “Heightened national security concerns, the growing business appetite for personal information and technological advances are all potent – and growing – threats to privacy rights,” said Stoddart (privacy commissioner) in a news release.

When I was in BC, I was asked many times, by banks, etc. for my care card number for “identification”. I gave it on one occasion, after being assured that they did not enter it into their system (for whatever that's worth). I later decided it would be wiser not to give it again. In the future post “Our Information Is Not Protected” you will read how our medical information is being shared “without authorization” (illegally), with our identifying number attached and you will understand how the care card number, or B.C. Services card number, can be used to identify you and your medical information.

Your provincial identification will be available to so many people and businesses/organizations that, in effect, everyone will have it. So, if they want your information, they won't have to try to find your care card number or search through numerous databases, they will have your B.C. Services card number.

(1) Plan to unlock B.C.'s trove of medical data raises privacy concerns, Rod Mickleburgh, 2012/04/18, Globe & Mail

(2) Security concerns, technological advances threaten privacy. Joan Delaney, 07 Jan 2008, The Epoch Times

(3) B.C.'s new identity cards raise host of privacy concerns, critics say, Luke Simcoe, Metro, 2013/01/09

(4) Privacy Groups demand halt to BC ID Card roll-out, FIPA, 2013/02/08

(5) Report finds B.C. Government's $182 million Integrated Case Management system plagued with “fundamental deficiencies”, FIPA, 2013/01/25

(6) Why China is a genetic powerhouse with a problem, Carolynn Abraham and Carolynne Wheeler, The Globe and Mail, 2012/12/15

(7) Court orders woman who almost died in fire to undergo tests to prove symptoms not linked to genetic disease, Joseph Brean, 26 Sep 2013, National Post

October 9, 2015

I'VE RETURNED

I had to take a break due to illness (see future post – my story) and moving to a province that is much less of a surveillance state. As often happens, things take longer than expected but I learned more. Unfortunately, most of it isn't good.

I moved to a province where (in no particular order):

1. there are no cameras in the streets or on the buses

2. no retention of medical information over seven years; BC has retained medical information since 1995, so 20 years and counting (5). In some cases they have data from 1985 (see #10), so 30 years and counting

3. there is no BC Services Card where all your information is linked (to be used for many purposes I'm sure the people of BC haven't heard about)

4. no MSP, much less one where the “storage, handling and administration” of our personal medical records is handled by an American company, subject to the US Patriot Act and other US laws (4)

5. no Translink compass card on the buses (3)

6. Use of facial recognition technology limited to driver's license (6)

7. no smart meter or, as some people refer to it, the stupid meter

8. As far as I know they have not taken away our right to determine who has access to our body parts and information

9. As far as I know, they do not track children (see The Children, June 17, 2011)

10. As far as I know, they do not track everything else on people.

For example (from The Children – June 17, 2011), in BC “HELP partner, Population Data BC, offers the research community access to one of the world’s largest collections of health care, health services and population health care data; “Population Data BC offers qualified researchers access to a rich source of linkable, person specific, but de-identified data on British Columbia’s four million residents, in many cases from 1985 forward. Current data holdings include health care and health service records, population and demographic data and occupational data. This post also identifies all the other information these “people” want and, as for, de-identified, I believe that lie has been laid to rest (See future posts “Our Information Is Not Protected” and “Anonymous”).

11. No automated license plate recognition technology (ALPR system) as far as I know (1)(2)(7)

12. No Gag laws (see posting “Gag Law”, May 12, 2013)
13. No giving political parties/candidates/individuals "who voted" lists (see future post "BC Bill 20)

Look at the amount of information BC is collecting vs another province and BC plans to collect a lot more, such as Translink's Compass card (2). In other words big brother/sister has a MUCH smaller footprint in another province and the citizens have more privacy, more rights.

When you look at the list of ways the people in BC are being tracked and information collected you have to come to the conclusion that this information, and our body parts, are being sold/traded/bartered (see future post “sold/traded/bartered).

* (see next three of my posts “Selling/Trading/Bartering”, “Smart Carecard”, “Translink”).

(1) Former solicitor general applauds license plate privacy report – Andrew MacLeod, 23 Nov 2012, The Hook

(2) Police use of licence plate scans breaks privacy law: commissioner, Andrew MacLeod, 15 Nov 2012, The Hook (3) Critics worry ID, Compass cards could be linked, Gordon Hoekstra, 15 Aug 2013, Vancouver Sun

(4) 100+ reasons the BC Liberals must go, No Strings Attached : Laila Yuile on politics and life in B.C.

(5) Plan to unlock B.C.'s trove of medical data raises privacy concerns, Rod Mickleburgh, 18 Apr 2012, The Globe and Mail

(6) Investigation Into The Use Of Facial Recognition Technology By The Insurance Corporation of BC, 16 Feb, 2012, The Office of the Privacy Commissioner

(7) We Know Where You Drove Last Night: Police, Andrew MacLeod, 16 Nov 2012, TheTyee.ca

(8) Powerful new card to replace B.C. Care Card, The Canadian Press, 08 Jan 2013, CBC News

(9) Privacy concerns raised over Translink's new fare card, 18 Jan 2013, CBC News

May 12, 2013

GAG LAW

I would normally be starting to hand out information in front of St. Paul's at this time. But I can't because the politicians have decided that anyone, who spends even $1, actually I believe that is even a penny (there are still some in use) can be fined if they do so without registering with them. The politicians want to know who we are, who we support and that goes into their computer system (and is shared with everyone). The BCCLA (B.C. Civil Liberties Association) has taken the issue to court, but that will probably take years. So, the politicians get to shut up a lot of people so it will be mostly the voices of the politicians that are heard (brain-washing as I see it).

People like me, on the front lines, regularly threatened for exercising our democratic rights, aren't going to give out our name and contact information. But I can write on the blog as this doesn't cost anything and because I am an individual.

April 25, 2013

DEMOCRACY - - - OR NOT

Update: This is now on YouTube

You may wish to go to the following websites to read the rest of the articles and for information on a documentary showing in the Lower Mainland on

"Whipped: The Secret World of Party Discipline" Thu/Fri/Sun – source: www.fairvotingbc.com

Screenings: Thursday, April 25 (7:00 pm), UBC, Buchanan Building, Room A103;
Friday, April 26 (7:00 pm) The Vic Theatre 808 Douglas Street, Victoria;
Sunday, April 28 (7:00 pm) Alice MacKay Room, Library Square Conference Centre 350 West Georgia St.

Www.thetyee.ca – See 'Whipped,' Sean Holman's Expose on Slavish Politicians by David Beers, April 22, 2013. After you read David Beers article and/or see the documentary you may want to ask yourself what the MLA's do for us – the people. We pay them wages, expenses, golden pension plans but for what?? They don't represent us, only their party.

Sean Holman says "Are we happy with a political system where most MLAs only have a say in secret? Are we happy with a political system where MLAs are often unable to tell voters when they disagree with their party? Are we happy with a political system where government has the power to get whatever it wants in the legislature?

"Because that's the system we've got." …...

www.straight.com -The Georgia Straight – Sean Holman documentary exposes how political parties keep MLAs in line – by Charlie Smith – April 24, 2013.

David Chudnovsky said “They sent us here to govern, and we don’t,” the MLA said. “Everybody who works here knows that the real governing takes place in the premier’s office with a few handpicked friends and advisers.” …....

And you wonder how the politicians (and their friends) can steal your democracy, your rights. It is obviously very easy. Who is going to stop them.

Www.thehuffingtonpost.com – Whipped: The Secret World of Party Discipline – by Sean Holman. He said: “In fact, I've discovered, out of the 32,328 votes cast between June 2001 and April 2012, just 80 or 0.25 percent were cast by MLAs voting against their own party.

That means a party with a majority can essentially do whatever it wants in the legislature -- so much so that the last time a government bill was defeated was 1953, the same year Joseph Stalin died. But those numbers also suggest, as one former MLA told me, "There's got to be times -- random chance if nothing else -- that some of us actually disagree with what we're voting on."

April 15, 2013

WHISTLEBLOWERS

Why don't the politicians support a Whistleblowers Protection Act. Because the misconduct, bad policies, corruption, etc. the whistleblowers report would include the politician's. Politicians don't want people making the politicians accountability, they want to shut them up.

People in the medical business might speak up if they weren't afraid of losing their jobs.

To learn more about whistleblowers see website www.fairwhistleblower.ca

April 14, 2013

FIXING THE MEDICAL SYSTEM

Do you think the politicians will ever “fix” the medical system. I don't. What would they have to blackmail us with. If you don't support the oil and gas drilling we won't have money for hospitals and education. If you don't support the olympics we won't have money for hospitals and education. If you don't support the HST we won't have money for hospitals and education. If you don't support__ __ __ (fill in the blanks) we won't have money for hospitals and education.

April 13, 2013

AUDITOR GENERAL JOHN DOYLE

Mr. Doyle I am truly sorry that a man of your calibre as a human being is leaving but I wish you the very best in Australia. I hope that you won't run into the same difficulties, as you have here, in doing your job in an ethical, responsible, moral manner.

This, unfortunately, is what happens, when a good person gets into the government and works “for the people”. The dirty (is there any other kind?) politicians get rid of them. The politicians want immoral people, people who work for the politicians, covering up what they do, or at the very least, not exposing it. That's why politics has such an ugly reputation – because the good people never last.

But I am grateful for people like Mr. Doyle, the auditor general, who show us that decent, ethical people do get into government, and, although they don't last long, they can accomplish a lot of good things during the time they have.

Source: No extension. B.C. NDP want auditor general decision reconsidered – Metro, January 11, 2013

April 12, 2013

CHILDREN HURT, DYING IN CARE OF POLITICIANS

This is a very, very serious problem that I have been reading about for some time, from different sources. Mary Ellen Turpond-Lafond, one of the rare people working in government who actually work for the people, has been fighting to protect the children. She is the B.C.'s representative for children and youth. The children in the care of the “government” (the politicians), in a democracy it would be considered “our care”, are dying or being injured in truly disturbing numbers. She has been battling the politicians. The politicians either don't care, or are incompetent, about protecting these children. But the politicians want us to vote for them so they can continue to let these children be harmed or die. THESE ARE CHILDREN. But I guess spending time at photo-ops, or trying to cover up their latest scandal or spending money on advertisements is more important. And I don't think one party is any better than another.

I wonder how long Mary Ellen Turpond-Lafond will remain employed by the politicians (see next blog).

April 11, 2013

Not Voting

I don't vote anymore. The politicians lie, steal, kill and destroy our democracy and rights. Then they ask us to vote for them so they can continue to do the same. I finally realized that this was a really stupid thing to be doing. Why would I dignify people who steal from everyone, but in particular, the vulnerable, the newborn babies, the sick and put them in harm's way, by voting for them. These are people who, when you demand that your right to privacy be respected, simply take away your rights; no vote, no discussion, not even a notification to the public, just hide it in a bill with a lot of other things (see prior post).

I was taught, from the time I was a child, that you don't pick on the vulnerable, those weaker, smaller than you but those seem to be the prime target of politicians.

We hear about scandal after scandal. The politicians and their friends looking after themselves at the expense of the people. And you know that for every scandal we hear about there are many, many more that they have managed to hide, to cover up. I now believe that politicians are the bottom of the human race, the garbage. Mind you, they have a lot of company down there. And I think all political parties, run by politicians, are the same bottom feeders.

People have said that if you don't vote horrible things will happen, that you will get the people you deserve, etc. I've noticed that horrible things happen when I do vote and I don't get the people I deserve whether I vote or not. The politicians, the medical system, the police all collect information on law-abiding, and many of them vulnerable, people but we aren't allowed to even know why and who it is being shared with

I've heard people say that you should vote even if you ”spoil” the ballot . I tried that one year. What I noticed was that little or no mention was made of the number of spoiled ballots but everyone talked, and tracked how many people didn't vote. Of course, they like to say that people don't vote because they are lazy, apathetic, not interested. It sounds a lot better than saying that people don't vote because they are so disgusted with, so repulsed by the dirty excuses for human beings called politicians.

As the number of people who vote continue to drop, there is now a suggestion that people should be forced to vote. I once said that I would agree to that if they put “none of the above on the ballot”. But then I realized that forcing people to vote in a so-called “democracy” is an oxymoron. What is democratic about it? You take away people's right to choose whether they want to vote or whether they want to protest by not voting. Of course, with online voting possible, it would allow the politicians to screw the numbers. But forcing people to vote would make it appear that the people supported politicians.

The politicians are people for whom I have such contempt. They are the people that I try to ignore, or work around. Every time I have contact with them I find out that another right I am suppose to have is just writing on a piece of paper, like them useless (at best).

Politicians like to say they are the “servants of the people” or “public servants”. But when a political party and the politicians get “elected” they are said to be “in power”. And evidence shows that 99.9% of the time, it is the politicians who have the “power”, not the people (the HST being one of the rare exceptions). We are the servants of the politicians.

In a democracy politicians are suppose to be accountable to the people. They are suppose to answer the questions of the people honestly and openly. But these politicians are people who do everything they can to avoid being accountable, avoid transparency, just read any paper, online or otherwise. Just ask a question and try to get a real answer, not some con.

But, for those planning to vote, and even those not planning to vote, ask you local politician some of the following questions:

1. Why did they take away our right to privacy in the medical system?

2. Why are hospitals refusing to state, specifically, who has access to medical records?

3. Why do we not have a “right” to know who has access to our personal information?

4. What information will (is) go to the provincial medical database and who will have access and how much?

5. Ask about the committee set up to look into privacy issues in the health sector? Does it still exist? Who was/is on the committee? How would we contact them?

Ask them to prove anything they say. And be sure to record anything they say because they lie.

September 25, 2012

BILL 35 - PHAARMACEUTICAL SERVICES ACT

Collection, use and disclosure of personal information

22 (1) The minister may collect personal information under this Act for one or more of the following purposes:

(2) The minister may use and disclose, inside Canada, personal information collected under subsection (1) for one or more of the following purposes:

(i) to conduct or facilitate research into health issues;

(k) for a prescribed purpose.

(3) The minister may disclose, outside Canada, personal information collected under subsection (1) for one or both of the following purposes:
(a) to conduct or facilitate research into health issues;

This act gives the government and their friends the right to use our information without our knowledge, must less our consent.

How will it be used? We don't know. For example, as Vincent Gogolek of FIPA states, a prescribed purpose “could be anything”. He also believes that we should have the right to say NO to having our information shared even anonymously. So, in essence the politicians have given themselves, and their friends, the legal right to do whatever they want with our personal/medical information as opposed to doing it illegally as they have in the past.

Personally, if they want my information, I want to answers to questions such as (for starters) who they are (name of research organization), I want to know what type of research they are doing, I want to know if it is being done outside Canada, if it is being done anonymously, how the information is being protected (with proof). If they want my information they should be required to set up a webpage providing this information. Then I can decide if my information is being shared appropriately. I want them to be transparent so they can be held accountable. They don't want to be transparent, and therefore accountable, which proves I do have reason to be concerned. Also I want to know what money, or other form of gain, is being exchanged, who pays and who receives.

I would also like more details. The Act is vague (do you know what it means to you?) and if the politicians can't provide more specifics about what they mean then they don't know what they are doing or they are trying to hide what they are doing.

Even the privacy commissioner Elizabeth Denham states: “In Bill 35, I have a concern about the broad and unfocused authority for the minister to collect and share personal health information under that act,” she said. Again, it appears the politicians have ignored the privacy commissioner when implementing this act. It appears that, as usual, the privacy commissioner wasn't even consulted.

According to the Vancouver Sun (a paper I never buy) “Hansen says sufficient safeguards are already in place to assure both the anonymity of records and to ensure they will only be released to responsible researchers.” We are not given the opportunity to determine if these researchers are responsible, only the politicians do that and we know how ethical they are. Also, see my next blog about the latest scandal on patient information being shared, apparently illegally, with researchers (which contradicts Colin Hansen's statement of safeguards). As usual the politicians will ignore the evidence that our information is NOT being protected and just tell you what they want you to believe (brainwashing).

Our information can now go into other countries. What information is going into other countries? Whose laws apply to our information in this other country? Can our information be accessed under the U.S. Patriot Act (I really don't believe that all the information shared will be anonymous now any more than it has in the past).

The politicians would have you believe that all researchers are ethical, and moral but they are not. I don't think that anyone who takes my information without my personal knowledge and consent has any ethics, morals or integrity. And pharmacetical companies, one of (if not the) main funder of researchers, have been charged and convicted numerous times for various illegal acts. Not all research benefits society. In fact, some of it harms society.

Information has been shared with researchers in the past and is supposedly done so under specific circumstances. But as shown in the past, for example the Auditor General's audit of the Vancouver Coastal Health database and the recent scandal, the rules aren't followed. The hospitals just give the information and nothing is done to ensure that the information is properly used or protected. There are words on paper and there is reality.

Colin Hansen has been pushing to give our information to researchers while he was in the Liberal government and even now that he has left. I will be interested to hear where he gets his next job or directorship.

Again, if they have to take OUR information without our knowledge/consent, if they have to hide what they are doing with OUR information, then they are doing something wrong, something they don't want you to know about.

WITHOUT TRANSPARENCY, THERE IS NO ACCOUNTABILITY

AND THERE IS NO DEMOCRACY

Sources:

- Bill 35 – Pharmacetical Services Act

- FIPA – Piecemeal Repeal of FIPPA? - June 1, 2012

- The Hook – Drug Bill Includes Personal Information Grab: Advocate – Andrew MacLeod, April 30, 2012

- Vancouver Sun, Craig McInnes, May 3, 2012

September 24, 2012

WHAT/WHO ARE THEY SELLING

There was an article in The Province (not a paper I buy) on Aug. 12, 2012. The article was by Geoff Plant, chairman of Providence Health Care, which operates St. Paul's and other hospitals/clinics. I don't know if this article was paid for by the taxpayers, but that's another issue.

In the article G. Plant extols the virtues of St. Paul's (a very one-sided view) but what interested me was the statement that St. Paul's brings in research dollars of $43 million from outside sources annually. So, what are the research companies buying --- us?

Is St. Paul's selling us?? We, of course, are not allowed to know.

Geoff Plant is a former liberal attorney general and teaches at UBC (who is involved in research with St. Paul's). Interesting how it's all connected by the same people.

But, it keeps coming back to the same issue. If everything is above-board, honest, ethical, moral, then why won't they tell us who they are sharing our information with (names of companies/individuals and under what circumstances); why do they hide this information?

No transparency, no accountability.

July 20, 2012

POLICE AND PRIVACY

A little over a year ago the BC Civil Liberties Association raised the issue of the police database (called PRIME-BC) collecting information on law-abiding citizens (1). They state “that as many as 85% of British Columbia's adult population have “master name records” in the PRIME-BC police database”. The Solicitor General was asked to investigate. According to the BCCLA, they have received no additional information. The Solicitor General's office has not responded to my email.

The Privacy Commissioners office is “examining the issue of employment-related criminal records checks” and the report is, apparently, due out this month. This is a very narrow focus and does not answer the broader questions.

My questions are:

1. Why are the police collecting information on law-abiding citizens and under what circumstances is it being collected?

2. How is this information being used?

3. With whom is it being shared?

4. How long is it kept?

Apparently, no government office thinks we have the right to answers.

It was pointed out to me that the records of a criminal are legally required to be deleted after a certain period of time. A law-abiding citizen, apparently, has no such right and, it appears, records may be kept indefinitely.

Apparently the database includes “negative police contact” which, I understand, includes being a witness to a crime, or “residents of a building in which crime was occurring in a different unit, and if you refuse to answer their questions you are listed as “uncooperative”. Personally, I would rather be listed as “uncooperative” than provide personal information (it does depend on the situation). At least I know that all they have to enter in the database & share is “uncooperative”. When I have answers to the questions above I will reconsider my willingness to “cooperate”. Until then, as far as I am concerned, they don't deserve my cooperation.

The next two blogs will show how this may become an issue with medical information.

(1) BCCLA – www.bccla.org - More than eight out of every 10 BC adults in police database, March 22, 2011 (topic: police accountability) –

FIPA – www.fipa.org – Information and Privacy Commissioner announces investigation of

BC's PRIME police database – March 29, 2011

Vancouver Sun – Are you in the police bad book? March 29, 2011

July 21, 2012

MEDICAL INFORMATION SHARED WITH U.S.A.

CBC News, September 9, 2011, By Sarah Bridge – Canadians with mental illnesses denied U.S. Entry – Data entered into national police database accessible to American authorities: WikiLeaks

Police had been called to a woman's home because she attempted suicide with a pill overdose (she had been battling chronic pain, anxiety, & depression for years). This was 4 years prior to 2011. There were no charges as it was not a criminal matter but a medical emergency. Suicide (actual or attempted) is not illegal in Canada or the U.S. But when she went to the U.S border in 2011 she was denied access because the U.S. had the “dated” police information (it did not report her mental health recovery). More than a dozen others have reported similar stories about being refused entry to the U.S. because their records of mental illness was shared with the U.S. Department of Homeland Security.

“So far, the RCMP hasn’t provided the office (The Toronto Psychatric Advocate Office) with clear answers about how or why police records of non-violent mental health incidents are passed across the border.”
“According to diplomatic cables released earlier this year by WikiLeaks, any information entered into the national Canadian Police Information Centre (CPIC) database is accessible to American authorities.”

Stanley Stylianos, program manager for the Psychiatric Patient Advocate Office says his organization is trying to get this information not included in CPIC. “Once that information gets into the American system, you can’t control it,” he says.

You may or may not agree whether the information should be included in CPRIC. I personally don't see any reason why it should be. But that is another issue to be debated.

My questions are:

1. Why do people have to go to a foreign country to find out that this information is being shared, or find out from Wiki-leaks or from brave people, like the lady in this article, who must share very personal information to raise awareness. People make plans and travel to a foreign border, usually with friends and/or family, only to find out they can't cross a border. Their travel plans are ruined and how do they explain to family/friends what is extremely personal information, and perhaps no longer even relevant. What happens when you fly to a country, for example, France? After you have flown across the Atlantic, do they force you to get on another flight home, after all your flight/hotel, etc. expenses have been paid? Or is this an issue strictly with the U.S.? The point is that OUR GOVERNMENT should be telling its citizens that this information is being shared and what to do about it.

2. “Brad Benson from the U.S. Department of Homeland Security says medical records aren't shared between countries.” Yet, while I have been in front of St. Paul's, several people, with AIDS, have told me about being refused entry to the U.S. And one person said no one but his doctor knew about his condition. So, if people with certain medical conditions are not allowed in the U.S., how does the U.S. know who they are? (Note: the restriction on people with AIDS entering the U.S. has been recently reversed but this does not change the question).

3. Who else has access to CPIC?

The lady did get entry to the U.S. but first “she had to submit her medical records to the U.S. And get clearance from a Homeland Security-approved doctor in Toronto, who charged her $250 for the service.”

And the U.S. has been continually complaining that they don't get enough of our personal information.

PRIME-BC and CPIC are different databases but are they linked?;

Does the U.S. and others have access to PRIME-BC as it does CPIC?

July 21, 2012

U.S. WILL BE ALLOWED TO SHARE BORDER DATA ABOUT CANADIANS

A new binational privacy charter will allow the U.S. to share information about Canadians, collected at the border, with other countries. “The U.S. won't have to explicitly tell Canada about its plan to pass along the personal information in most cases.” “But the U.S. can only do so in accordance with U.S. law and relevant international agreements and arrangements.”

“In the absence of such "international agreements and arrangements," the U.S. must inform Canada prior to the transfer, or as soon as possible after the transfer in the case of urgent circumstances.”

Emily Gilbert, director of the Canadian studies program at the University of Toronto, raised questions:
1. "When somebody is a person of interest in the United States, but is a Canadian, what does that mean?" "And then what does it mean if that information is then being sent to the European Union or somewhere else?"
2. it is unclear how the distinct constitutional and legal frameworks of the two countries are going to be maintained in the context of cross-border information sharing.
3. where will data collected under the border processes be physically stored and who will have access to it.

4. regarding the principles of "effective remedies before a fair and objective authority" when a person's privacy has been breached”,” who would fulfil the role of authority and whether the body's rulings could be appealed.”

Some points to consider:

1. Note that the U.S. Is only required to inform Canada when sharing Canadian information, not get permission.

2. Also, as usual, so many questions and no answers; questions that should have been resolved before signing an agreement.

3. Do they only collect the information when you physically go to the border and what information is collected?

4. What do they do with all the other information they have access to on Canadian citizens who never enter the U.S.?

5. What are the U.S. laws (today, bearing in mind they can change tomorrow), what are the international agreements and arrangements? It's very convenient to throw around the words “laws, agreements, arrangements” but what are they? What information can be collected, under what circumstances, who has access, etc. We are told none of this.

5. Canadians have never been consulted as to whether they agree with this sharing of personal information.

6. To again quote Stanley Stylianos (see prior post), “Once that information gets into the American system, you can’t control it,” And this would be made worse when it is shared around the world. The U.S. shares it with, for example, Iraq, Iraq shares it with (fill in country), who shares it with (fill in country), who shares it with (whoever). At what point does it enter the hands of the marketing companies, the U.S. military (who had already started an illegal DNA database on its own citizens – see prior post).

7. We have already seen that the hospitals can't/won't protect the information in its database. So it is highly unlikely that the information will stay confidential once it starts entering even more databases.

From the Globe & Mail's comment section:

1. andhalamadola.

How does this privacy charter take precendece over our own Citizens Charter?

2. SlipperySlope: The Harper government, selling our privacy, to the highest bidder.

3. Scared Monkey: Oxymoron of the day, "Share/ private confidential" information. Wow!

4. Richard Roskell: It is SUCH an honour to have personal information about Canadians shared with and administered by the USA, for use as they see fit. All the sucking up that our governments do with America is really starting to pay off!

5. Chris in Ottawa: Harper should be tried for treason at some point. The only jurisdiction that should be allowed to share information on Canadians derived from Canadian sources should be Canada and that should only be done under the umbrella of international agreements that protect privacy. I have no confidence at all that the Americans will not abuse this!

AND

6. Mr.Helpful

Why is it called a privacy charter when it is the opposite of privacy.

Responses: OldBear: Read 1984, it's called Doublespeak. Wren10: "marketing", "re-branding", "spin".

Now, even more Canadians are planning to never enter the U.S. again. But is that enough?

Calgary Herald – by the Canadian Press – U.S. Will be allowed to share Canadian border into under new privacy charter – 6/28/12

Global News – U.S. Will be allowed to share Canadian border info under new privacy charter – Jim Bronskill – The Canadian Press - 6/28/12

International Trade E Newsletter Content – Toronto Star – 6/29/12

CBC News – U.S. Can share Canadian border info under privacy deal – The Canadian Press – 6/28/12

The Globe & Mail - U.S. Will be allowed to share Canadian border info under new privacy charter – Jim Bronskill - 6/29/12

June 30, 2012

HOSPITAL EMPLOYEE'S UNION - CONTRACTING OUT

According to Hospital Employee's Union (HEU) website “a plan by Lower Mainland health authorities to contract out all medical transcription services threatens to put the confidentiality and accuracy of patient records at risk. On Thursday, health authorities issued a request for proposals to contract out the work of more than 130 medical transcriptionists who work out of three hubs located in Vancouver, New Westminster and Abbotsford. HEU secretary-business manager Bonnie Pearson says the move will transfer control over the accuracy and confidentiality of sensitive patient records to a private contractor. “Health authorities have a responsibility to both patients and physicians to maintain close control over highly sensitive patient records,” says Pearson. “This ill-thought out move by health employers comes with an unacceptably high degree of risk.” Medical transcriptionists are responsible for transcribing physicians’ voice-recorded dictation of surgical procedures, consultations, patient histories, laboratory and diagnostic test results, and various reports.” www.heu.org/take-action-protect-your-medical-records
I have never had any indication that HEU gives a damn about patient privacy (this is a generalized statement about the organization as I believe there are some individuals who do care). HEU is the organization that made sure their employee's privacy was protected but not the patients. I also don't recall them starting a “campaign” when the politicians and their friends took away patient rights to their own medical information. Nor do I recall hearing a peep out of them while, for over 10 years, the DNA of babies was being stored by a private contractor and shared without parent knowledge or consent; in fact, some of these HEU members would have been among the people who conveniently all decided that “the parents wouldn't be interested”in knowing what was happening to their baby's blood. Etc. I only hear about their “concern” for patients when HEU jobs/working conditions are involved.
And to suggest that patient records are confidential, when so much evidence indicates otherwise, is just incredible hypocrisy. But, like the politicians and corporations that run the hospitals, they figure that if tell say it often enough people will believe it or, at least, they won't have to explain why it isn't confidential (I would like to see their evidence that patient records are protected, not just hear the spin). I believe HEU really only cares about the jobs/working conditions of its members and the privacy angle is simply a means to that end.
Having said that, if what they say is true in terms of contracting out medical transciption it probably will worsen an already bad situation. I was told that the contract will go to Accenture (I don't know if this is true), a US corporation which means it is subject to the US Patriot Act. This would be the Accenture that, I understand, did not have its contract renewed with BC Hydro.
I heard there will be a documentary on CTV on Sunday night. It will be interesting to see how much of it is about the patients and their loss of rights and privacy vs HEU and their self-interest.

June 29, 2012

COLLECTING NEW INFORMATION THROUGH VALIDATION PROCESS

This blog is about privacy but not necessarily hospitals but I thought it might be useful information.

I recently phoned to cancel my utilities with Accenture/hydro and Terasen/Fortis. I was asked for information to validate that I was who I said I was which I think is good. However, both companies asked me for my date of birth. I was fairly sure that I had never given it. When I asked I was told that they were now collecting this information. So, a few problems:

1. Collecting new information is not the same as validating information. In fact, I would think that it would be illegal to collect information in, what seems to me to be, a very devious manner.

2. I asked why they wanted this information and they refused to say. Under the Privacy Act, when you collect information you are required to state why you need it. But then the politicians and their friends do tend to ignore the Privacy Act except when it comes to spin.

3. The information they had on me was obviously good enough all these years.

Everyone wants your date of birth these days. Presumably this has to do with linking computer information. Is this information being shared? I thought the information held on you was suppose to be private so why do they want it?

September 22, 2011

THEME COMMENTS

When I am in front of St. Paul's I get some comments that run in themes. It's as if some people get together and decide to make very similar comments all within a few days. The latest theme is “You can't complain because it's free”. The following are some of the “passer-by” comments and my comments are in brackets.

It's free (no, the citizens pay for it)
They pay for it (assume she meant the politicians and no, we pay for it), but it comes from out taxes (which we pay)
They need it to pay for health-care (That would imply that they are selling our information which, I understand, is illegal)
Isn't it great that in Canada you can complain about something that's free (it isn't free).

If one takes that line of thinking that it's free then we can't complain if the roads are not repaired because their “free”; we cannot complain if the fire department does not go to fires because their “free”; we cannot complain if water doesn't flow through pipes and through our taps because it's “free”, and so on.

Then again maybe I'm wrong, maybe our health-care is free. Maybe we don't pay a dime towards our health-care. In which case, would someone please explain why we pay taxes? Where does the money go? Who does pay for our health-care? Do the medical people work for free?

Then again, maybe I'm right and this is the best excuse “they” can come up with for illegally sharing our information and destroying our rights.
______________________________________________________
Here's another comment that was quite bizarre (well, more bizarre than usual). A woman told me she worked in the pharmacy area of the hospital, that she had noticed changes over the last two years and wasn't that enough for my purposes. I asked her what changes had occurred and could she prove it. She refused to answer either question. It's like being given a blank piece of paper and having someone tell you there is writing on the paper so isn't that good enough. Presumably, she operates on the premise that she said it therefore it is. Isn't that a god complex?

September 21, 2011

PRIVACY COMMISSIONER

I understand the BC privacy commissioner is reviewing BC Hydro's privacy protection (or lack thereof) regarding the information the smart meters will be collecting.(Metro, 7/29/11). I'm sure she will find that everything is just fine. That seems to be the privacy commissioner's job.

Because I try to protect my privacy rights, I have filed a few privacy complaints with both the provincial and federal privacy commissioner's office. Even when I have been absolutely right – NOTHING CHANGES. Even when the privacy commissioner quotes a specific act or law that has been violated/broken – NOTHING CHANGES. Even when the privacy commissioner's office recommends that the organization/company make changes – NOTHING CHANGES.

So, I consider the privacy commissioner essentially useless to normal people. However, it seems that they are an invaluable asset to the government and organizations/companies. When a person complains to a ministry or other organization/company, that ministry or other organization/company just tells that person that if they are not happy then that person can take the matter to the privacy commissioner, knowing full well NOTHING WILL CHANGE. It's the equivalent of telling someone to file their complaint in file 13 (for those of you not familiar with the term, that's the garbage can where things are dumped, never to be seen again). It seems to be a very comfortable diversionary tactic.

In fact, I strongly suspect that the government set up the privacy commissioner's office just for this purpose.

So sad, I had such hopes for it. Instead, it seems to be just another government organization wasting taxpayer money.

June 17, 2011

THE CHILDREN (bold and italics are mine)

An organization called Kids First Canada has been raising awareness of the violation of children and parent privacy rights. Information is collected and linked, from preconception to adulthood, on your children and family (in fact, it appears that the information will be collected from preconception to death). Twenty-four pages of information, on each child entering school, has been collected by the Ministry of Education using a personal education number (PEN). This information was linked to HELP (Human Early Learning Partnership). HELP is a government funded research consortium of universities. According to HELP's, and associates, websites, it links the child's information to their family data such as medical, birth, death, hospital, perinatal, mental health, census, pharmaceutical, school achievement, daycare, children in province's care, stress, injury and Workers compensation board. This list is expected to increase; for example, HELP wants access to our personal income tax data, patterns of employment, time use, etc. Note that this is not information that is shared that can never be tracked back to you; it can be tracked back to you.
I understand that this is part of the Integrated Management System (see prior blog). This means that there will be thousands of access points to this information.

Until 2010 this information was collected and linked without parents consent. In 2010 this was changed from no consent to passive consent, in other words you have to sign a paper that says you don't want you child's information collected/shared? What if the paper gets lost, or you are busy and forget, or don't read very well, or don't understand what you read, etc. The schools say they will explain it to parents but I suspect they will not explain all the negatives to collecting/sharing your child's information (as much a time as knowledge issue). If your child's personal information ends up in the database all HELP has to say is that “they didn't receive a signed paper”. It would be hard to prove them wrong. On the on the hand, if they must have a signed paper before collecting/sharing the information then they would have to have the paper on file to prove they received it.
Kids First Canada are asking that written parental consent be required and all information collected without parents permission be destroyed.

Some concerns:
- information is being collected without the consent of parents
- information used for purposes not identified
- “HELP has stated in media and elsewhere that names and addresses are not used. However, given that HELP obtains Personal Identification Numbers, medical numbers and postal codes, etc. names and addresses would not be needed to individually identify a person or a family.” (1)
- “Judging from the types of data being collected -i.e. perinatal records, hospital records, census, etc. - parents' and mothers' personal records are also linked.” (1)
- “with increased use of electronic testing in school, children's personal beliefs, plans, opinions and experiences expressed in writing could potentially be linked.” (1)
- Will this pigeon-hole the kids, i.e. are they compliant, do they fit certain peoples expectations, are they “different”, etc.?
- Commercialization - HELP and its group has funding from organizations like the Canadian Institutes for Health Research whose mission is to “work with all partners in a concerted effort to move research from an academic setting to the marketplace”. Also from the CIHR website “CIHR is committed to facilitating the commercialization of health research in Canada in support of its overall mandate.”
- “The public has not consented to this collection of data or its use”.(1)
- Cost – we are paying a lot of money for these people to take our information and use it as they choose, sharing with those they choose, without our knowledge or consent
- The “rules” can change tomorrow without our knowledge, much less our consent.
- Security – The government has shown repeatedly that it cannot, and will not, protect the information in its care.

Just think when your children/grandchildren, nieces/nephews grow up, all their personal information will be available at the press of a button by probably just about anyone (banks, insurance companies, employers, future spouses/friends, universities, and so on). Did your children misbehave in school, did they get along with other kids, were they slow starters in school, did they have any medical issues, what is their family background, were there family problems, etc.

As Kids First Canada say “ Our children are not resources to be mined through schools at huge public expense while many parents struggle to pay for basics”. And neither are we adults.

It is not a question of whether all this information, linked to each person, will be “accessed” but how fast. We were told our medical information was confidential, to be shared only with those directly involved in our medical care, only to find out that it is shared with doctors, hospitals, clinics, pharmacies, their suppliers, researchers (and apparently lots of other people/organizations – who go to the “business office” and plug their computers into the database); and that information is now going to be linked to government ministries and I am sure the list will expand; all without our consent (and in most cases – our knowledge). The government just took the information. And once it's “out there”, it's “out there”. You don't get it back. The people who have this information will know more about you, and your family, than you know about yourself and your family; and they will use it for their own gain.

Some other databases they could link with include the police database. Apparently they've been keeping information even on law-abiding citizens (2). And, of course, the Smart Meter. Just think of the information those graphs would provide – the time you get up, the time you go to bed, whether you work out of home, if you go out in the evening and which nights, if you go on holidays and when, have family/friends over for the holidays, and much more.

And, as has been shown, once the government has your information, they can change the rules (laws) at anytime, without consulting us – unless we make that illegal. If you want our personal information, get our written permission.

We have a right to privacy. We have a right to control our own personal information. The politicians, and their friends, are repeatedly violating that right.

Here is some additional information from HELP, Population Data BC's and Edudata Canada's websites:

HELP'S website states “HELP's leading edge research has resulted in British Columbia being the first and only jurisdiction in the world to monitor the development of young children as they enter kindergarten at a population level.” - versus person-specific?????

“Researcher access to data will be approved by the Data Steward for a holding using a harmonized Research Agreement process through Population Data BC. Named programmers have access to Identifiers to perform linkages on intake only. Content Data are stored on a separate server, and are accessed by named programmers to perform Research Extracts as defined through a Research Agreement. In no cases are Content Data and Identifiers brought back together. This separation of information safeguards the privacy of personal information. “ (HELP)

If you have all the personal information of an individual, I doubt it would take much to “connect the dots”. A person lives in a particular postal code, has x number family members, is x age, etc. And, as Kids First say: “this is a false assurance of privacy as names are not needed when personal numbers are used.” Plus, there will be numerous “links” to all these other databases, and the more links, the greater the likelihood that this “separate server” with all your information,with your identifier number, will be accessed. How hard would it be to track, or intercept, a link? We also know that government people have accessed individual's information in violation of the law when it suited their agenda (The Veteran's affair for example) The Data Stewards are the government ministries and public agencies (but they don't seem to list them all), nor are the agreements shown.

As noted above in one sentence they say that “separation of data safeguards ...your privacy” then later admits that your data isn't safe by saying “Risk of exposure is significantly lower than that of most Data Providers as we separate Identifiers from Content Data”. So, they do admit that there is a risk of exposure, they just don't say how high a risk (and I'd want proof, not just words). By the way, HELP is looking for a part-time privacy officer whose duties will involve “addressing breach response management” - application deadline – April 19, 2011. Nothing like being prepared with the right excuse to explain why your very personal, confidential, information was shared with the world.

“HELP partner, Population Data BC, offers the research community access to one of the world’s largest collections of health care, health services and population health care data; “Population Data BC offers qualified researchers access to a rich source of linkable, person specific, but de-identified data on British Columbia’s four million residents, in many cases from 1985 forward. Current data holdings include health care and health service records, population and demographic data and occupational data. Population Data BC continues to expand its data holdings and is working to bring in datasets from education, early childhood development, work place, and the environment”. Who are these researchers? Are they people from supplier/pharmaceutical/other businesses (many foreign companies subject to the Patriot Act) and how is the information being used?
“The Canadian Education Data Network (Edudata Canada) is developing user-friendly educational research databases from British Columbia and elsewhere. The mission is to create an infrastructure that makes K-12 education data available to researchers, policy makers and other qualified individuals and organizations, subject to privacy and confidentiality guidelines”. Now they say that in addition to sharing with researchers, they will also share with government & “others”. Also, when they say education data it sounds like they are sharing school grades when, in fact, it includes much more.
How can we monitor Population Data BC's use of the data to ensure it is being used as contractually agreed upon?
All usage of the data will be regulated by an Information Sharing Agreement with the data provider which will outline how the provider can monitor the use of the data on an individual basis. This will include regular reports and is outlined further in Population Data BC's Audit Policy. Again this tells us absolutely nothing since we won't know what is in the contract, how they are being monitored or if Population Data BC is upfront about any violations. And no mention of independent audits. In fact, their audit policy is not on their website. And, as we know from the Auditor General's audit of the hospital database, the data provider wasn't monitoring the use/disposal of the data they had shared, so why would we believe that hundreds or thousands of other data providers will monitor the data they share..
CYDTRU – Child and Youth Developmental Trajectories Research Unit - “an emerging research unit within HELP is developing a program of research that will track children's development over time” “...utilizing linkable health, child development (school readiness), education, community resource and socio-demographic data. These databases will enable research projects that can trace individual developmental trajectories (anonymized) from conception to high school leaving, across various facets of the health, social and educational systems for all children in B.C." “CYDTRU researchers are working in collaboration to identify and create additional data sets that will enhance the current stock of trajectories data... - ...to develop and expand the number of population-based person-specific databases and to conduct research projects.” In other words, they are planning to collect even more information on us. As long as there are links back to the person it is not anonymous.
“The BCLHD (BC Linked Health Database) infrastructure brings together person-specific, population-based, longitudinal* data across a broad range of health and societal factors from the late 1980s onwards. The BCLD is one of only a small number of resources in the world where longitudinal research on an entire population can be conducted”. I guess other countries respect their peoples privacy, their peoples rights. Also note that they say entire population, not just children.
For more information you can contact www.kidsfirstcanada.org, www.earlylearning.ubc.ca, http://www.popdata.bc.ca/; www.edudata,edu.ubc.ca, www.soeh.ubc.ca

* a longitudinal study is a correlational research study that involves repeated observations of the same items over long periods of time – often decades. Longitudinal studies track the same people. - Wikipedia

(1) Kids First Canada
(2) Office of the Information & Privacy Commissioner for BC (OIPC), March 25, 2011, Commissioner Shares BC Civil Liberties Concerns Over Information In Police Database

June 16, 2011

NEWBORN BLOOD SAMPLES

In BC, a lawsuit is now underway, after it was discovered that about 800,000 newborn blood samples, together with names and birth dates, had been stored on information cards since 1999, in a storage facility operated by a private contractor; and the blood samples had been shared with researchers - WITHOUT THE PARENTS KNOWLEDGE, MUCH LESS THEIR CONSENT. (1)

CONCERNS:
1. This is, in fact, a DNA database. “DNA is your personal signature, and it uniquely identifies us” (Jennifer Puck, University of California, San Francisco) (5)
2. These spots are being shared with researchers, without the parents knowing who the researchers are, who they work for, what kind of research they are doing, to whom they subcontract, etc.
3. Bill 11, passed in May 4, 2010, gives the Minister of Health power to collect, gather, use and share personal information without any notice to or consent from affected individuals.. In other words, your personal information can be shared with governmental and law enforcement agencies, without notice or consent. The B.C. Civil Liberties Association (BCCLA) is trying to have this reversed. (7)
4. The information may be used to discriminate against the individuals by employers, banks, insurance companies, your child's future spouse, etc. “You could make inferences about their future health, about their future behaviour, and if you got samples from their parents or a DNA databank, you can make inferences about family relationships.” (4)
5. The DNA also provides information on other family members (8)
6. The researchers/private companies may manipulate, alter or splice the DNA. (3)
7. The amount of information that can be obtained from DNA is expected to increase (8)
8. The genetic information could be used for unethical purposes such as human cloning,etc.(5)
9. De-identified blood samples are linked to personal information and you can trace the link. The blood samples are stored with a code number in one place that can be easily matched to names stored in another place. (4)
10. The blood samples and other information could be accessed by pharmaceutical and biotechnology companies, commercial companies who might bias or manipulate research findings. (10)
11. “The dark side is the commercial value of the human body. If the nature of the specifics of a given individual is available to the people searching for organ matches, the finding of a match might be someone who is not dead. Yet. (Ultra Bob) (5)
12. How securely is access controlled or is it like our hospitals, where audits have shown that almost anyone could access information. It has also been suggested that there isn't any system, no matter how good, that can't be abused and “once it's out there, it's out there” (10) And it's not just hackers that are a concern but employees with, for example, a flashdrive which can be put into a database to download information.
13. Conflict of interest - “...Just look at the conflict of interest statement in any pharmacogenomics journal today and you will find that the head of each of the major studies and a select group of investigators, funded by public tax payers money from NIH, and YOUR DNA, are going to make huge profits from royalties and huge salaries these physicians-researchers earn because they control proprietary samples that are otherwise hard to come by. Just by tying a SNP to a treatment outcome or diagnostic outcome, there are big profits in the healthcare business to be made; with no real innovation! Hence, one wonders about the real motivation underlying collection of blood samples with consent and especially without consent - a cure or a profit!” (11)
14. Ownership - Who owns the specimens and anything created from the specimens. (10)
15. Cost – It apparently costs quite a lot to store the blood samples in the right climatic environment. Is this how you want our health care dollars spent? (3)

Medical people certainly had lots of opportunity to tell people and ask for their consent. They verbally explained why the “heel prick” (taking a newborn's blood) was important for testing for diseases, they handed out pamphlets, and there was a website. But apparently not one person in the medical field, in over 800,000 births, mentioned that the children's blood was being stored indefinitely and used by others. Apparently no one in the medical field thought people would be interested in knowing the bloodspots were being stored and shared (or so they say), despite the fact that this had become an issue worldwide. (2)

In 2002, the public forced South Carolina to pass a law regulating the collection, storage, and use of blood samples. (9)
In Texas a lawsuit was settled when the state agreed to destroy the stored blood spots. New legislation requires parental consent and allows parents to opt out and all projects must also be published on the agency’s newborn screening website. However, a second lawsuit has been filed because they (the plaintiffs) had not been told, during the first lawsuit, despite asking numerous times, that the blood spots had been sold, traded and bartered. (13)
Blood spot samples apparently were also sent to the U.S. Department of Defense and Homeland Security. The U.S. Department of Defense, who were using the blood samples to build an international database, reportedly destroyed the samples (of course, you never really know, do you???). (13)(6)

A Dublin hospital has stored the DNA of all the people born in the country since 1984, creating a database. This was done without the individual's or parents knowledge, and apparently in contravention of the law; and despite having an ethics committee. (14)

Now that this issue about the children's blood spots has been brought into the open by the public, the BC Newborn Screenings Program has a notification on its website regarding storage. But, of course, it only mentions the positive and not the negative aspects of storing the blood samples. It allows parents to fill out and submit a form requesting the destruction of the blood spot (opt out), as opposed to being asked for their written permission to store/use the blood spot (opt in). It seems that the blood spot cannot be stored unless the parent agrees to it being used by others.
What happens if your form gets "lost". The medical/researcher people could say they never received it. It would be hard to prove them wrong. On the other hand, if they must have a signed paper before storing/sharing the blood samples/name/DOB then they would have to have the paper on file to prove they have a legal right to store/share the blood samples.

So what happens to everyone else's health samples. For example, when you go for a physical or an operation and blood/tissue samples are taken, are they being stored somewhere? What else has the medical/political people decided we don't need to know.

Some comments that I thought were particularly interesting:
Researcher | 10:11 a.m. Feb. 9, 2010
“I have worked in research for over 10 years. My job is to make sure that everyone obeys the law. When it comes to human research, the law is designed to protect the people who are the subject of research. Blood and tissue samples are your property even after they have been removed from your body, and researcher(s) can only do with them what they have gained your legal consent to do. That is the issue here. These researcher(s) do not have legal consent to do what they are doing. So many researchers feel like this is a hindrance. They would prefer to just be able to do whatever they want. They all think that what they are doing is for the greater good. If it is going to produce valuable results, it can and should be done legally. If you don't think these regulations are necessary, do an internet search on the Nuremberg Code, the Tuskeegee experiment, etc. Whether you care what happens to your child's samples or not, it is in everyone's best interest that researchers are forced to be accountable for what they do, and gain the proper consent. “(5) In BC, the politicians have taken the right to give legal consent, to decide what happens to your body parts, from you and given it to themselves.

"It's fine and good to say these can't be identified, but how real is that?" said Hank Greely, a Stanford University bioethicist. "Just because you don't have a name or Social Security number doesn't mean you can't identify it. Once we start using DNA for more and more things like regular medical records, somebody could do a cross-check and say whose blood it is." (12)
One: Telling people that their biospecimens are retained and used for important research, that strict privacy and confidentiality protections are in place, and that “we’re good stewards” of the biospecimens without providing accessible, clear information about those policies, fails to meet even minimum standards of transparency.
Two: Failure to acknowledge that public attitudes and values about consent, genetic research, and privacy/confidentiality may conflict with those of researchers and policymakers can lead to pubic distrust of biospecimen research and impede important research.
Three: Genuine public engagement in developing policies for biobanking initiatives takes time and resources. But the payoff – trust in the research enterprise and willingness to provide biospecimens – is worth the effort. (9)

IT'S YOUR DNA AND IT DOESN'T GET ANY MORE PERSONAL THAN THAT. (Michelle Salas)

1. The Globe & Mail, May 11, 2010, Jane Armstrong, Vancouver Parent Challenges Unauthorized Archiving Of Infant's Genetic Blueprint
2. CBC News, May 12, 2010, Scott Applewhite, Storing B.C. Babies' blood violates privacy: group
3. Infowars Ireland, February 8, 2010, Newborns' DNA Routinely Harvested For Government Bio Banks
4. In the Media, February 26, 2009, Barbara Sowell, DNA Testing Without Parental Consent?
5. Deseret News, February 8, 2010, Lauran Neergaard, Blood tests of newborns stirring major ethics debate
6. American-Statesman, May 10,2010, Mary Ann Roser, State agency swaps babies' blood for supplies
7. British Columbia Civil Liberties Association, May 12, 2010, New law may create largest DNA database in Canada
8. Statement of Claim filed with the Supreme Court of Canada, May 14, 2010, British Columbia Civil Liberties Association website www.bccla.org
9. The Hastings Centre Report, September 8, 2009, Karen J. Maschke, Disputes over Research with Residual Newborn Screening Blood Specimens
10. Exploring existing and deliberated community perspectives of newborn screening: informing the development of state and national policy standards in newborn screening and the use of dried blood spots; Ian Muchamore, Luke Morphett and Kristine Barlow-Stewart, December 13, 2006
11. The Scientist – Magazine of the Life Sciences, December 23, 2009, Consent issues nix blood samples, Anonymous poster - Non-Profit banking of DNA from blood for Profit
12. Washington Post, June 30, 2009, Rob Stein, Newborns' Blood Samples Are Used for Research Without Parents' Consent
13. Infowars Ireland, NaturalNews, February 20, 2010, Ethan A. Huff, Texas ordered to destroy five million blood samples illegally taken from babies without consent
14. Sunday Times, December 27, 2009, TJ McIntyre, “Is Temple Street Hospital Holding A De Facto National DNA Database

June 15, 2011

FACEBOOK

The government wants to share our information with social media groups like Facebook. Let me tell you a bit about the ethics of Facebook. Apparently they are “profiling” (I don't know what else you would call it) people who don't even have an account with them and who do not knowingly use their site.
I received some emails from Facebook wanting to know if I wanted to be someone's “friend”. I am trying to figure out how Facebook gets my email address. The people I spoke with said they never gave it to Facebook; one said Facebook “just went in and took it” (whatever that means).
But on the last email, Facebook also listed other people that I know (interestingly, I never received a “do you want to be their friend on Facebook” email for some). I call that profiling, tracking people you communicate with. I am not registered with them and do not knowingly use their site but still they collect information on me. And obviously Facebook benefits from this information (and whoever they share it with) or they wouldn't be collecting it.
In a letter (regarding another privacy complaint) on the Office of the Privacy Commissioner of Canada website (OPC to CIPPIC – under Commissioners Findings – PIPEDA 2009) it states “On the issue of retaining non-user's email addresses, Facebook confirmed it does not use email addresses to track the success of its invitation feature. In fact, it states that it does not keep a specific list of such addresses for its own use.” It appears that Facebook lied to the Privacy Commissioner.
I filed a complaint with the federal Privacy Commissioner's office in May of 2010. The Privacy Commissioner's office is “negotiating” with Facebook. I have asked the Privacy Commissioner's Office not to negotiate away any more of my rights.
Facebook has had a number of privacy issues, yet the government wants to share with Facebook our personal, confidential information. This would give Facebook even more information for their profiling and, quite possibly, the government will get more information on us, such as of list of the people with whom we communicate.

June 14, 2011

INTEGRATED CASE MANAGEMENT (ICM)

This is some additional information regarding ICM.

My blog of April 12, 2009 mentions a project called the Information Access Layer, which includes electronic health information and what is called the “Integrated Case Management Project (ICM)”.

The intent of this project is to collect all the client personal data collected by community service organizations that accept money from the government and link (share) the information to government ministries and their private sector contractors. And, it is believed, this information will eventually be shared nationally, and possibly, internationally. In other words, all information that you provide to the government, and any organization that takes a dime from the government, could be linked and shared.

According to a bulletin by the Ministry of Housing and Social Development, Deloitte Inc. has been contracted to develop the computer system. They claim that it will cost $181 million over six years but may start to be implemented by the end of 2010.

If you read “Culture of Care...or Culture of Surveillance?” at http://www.privacyresearch.ca, you will note the many concerns. These concerns include identity theft, people not accessing needed services because of privacy issues, legal risks and liabilities to the organizations, the lack of resources to implement the privacy and informational requirements (not to mention the diversion of those resources from aiding the people to providing information to the government), the constitutional right of the province to implement this system

The government has shown, repeatedly, that it neither has the desire nor is capable of protecting the information they collect. As has been proven, when the government says that the information will only be accessed by those who “need” the information, they lie, or, at the very least, have yet to prove that it is not a lie.

Once this information is shared, it is “out there”, it cannot be taken back. The information shared will follow the people for the rest of their lives. And, the government, once it has the information, can change the rules and do whatever it wants with the information (example is the e-health system – when you gave your personal information to a doctor or hospital, over the years, did you know that it would be shared).

Also, the government has yet to operate in an open, transparent, accountable manner. So, we will not know specifically who is accessing the information.

June 13, 2011

DUTY TO DOCUMENT

In comments to the privacy review (1), Paul Fraser, Acting Information and Privacy Commissioner, recommended to “Add to FIPPA a “duty to document” key prescribed government decisions”. “The OIPC has investigated hundreds of complaints concerning the fact that a requested record does not exist, as one was never created”. “...a “duty to document” be contained in access to information legislation, which would include a requirement for detailed documentation of key government actions and decisions, and an obligation to keep records up to date and readily retrievable, with penalties for non-compliance. A duty to document key government decisions is critical to good governance.”
The government and all the agencies and corporations of the government don't like to document anything because that makes them accountable, which I assume, is one of the reasons the hospitals/clinics refuse to state specifically who has access to our information. So, I will provide some tips based on my own experiences:
1. We have a right to have the information provided by government in writing so I have been told by government staff. And, that you can report them if they refuse to put it in writing.
2. They (those who don't want to put it in writing) will tell you that it is easier to discuss it on the phone (or in person behind closed doors) and they will put the conversation in writing later. I have found that what is later written (if something actually gets written) usually has little resemblance to what was said. So now I insist that it be put in writing, and it helps to prevent misunderstandings.
3. They insist that they just want to say one thing on the phone (or in person). I think of it as the “foot in the door” tactic. They don't stop at one thing and, before you realize it, they have said everything. And nothing is in writing. If I get caught in this tactic now, I let them know that, since they lied and nothing was in writing, it didn't happen, the conversation never took place. And, because it isn't in writing, they can't prove the conversation took place.
4. I had one person from the government who kept phoning me, despite the number of times that I said that I wanted to communicate only in writing. I should have reported him but instead, if I answered the phone I would repeat that I wanted everything in writing and hang up. If he left a message on my answering machine, then I would email him, restating what he had said on the phone and providing an answer. That way he either had to deny what was in my email or, by default, agree that it was what he had said. The end result was that it was in writing.
5. If someone refuses to put it in writing when asked (government or other), if they won't be held accountable, then I know that what they have to say isn't worth my time (the hospitals are an example). And, in fact, may put me at risk because there is a reason they don't want it in writing. I also think it lacks in ethics and integrity.
There are obviously occasions when I don't need it in writing. It's a judgement call. But if I have to think about whether I need it in writing or not, I get it in writing.

(1) Office of the Information & Privacy Commissioner for BC, March 15, 2010, Submission of the A/Information and Privacy Commissioner to the Special Committee to Review the Freedom of Information and Protection of Privacy Act
(2) The Tyee, April 1, 2010, Andrew MacLeod, BC Lousy at Guarding Privacy

June 12, 2011

PRIVACY REVIEW

In an earlier blog (November11, 2009) I wrote that the government had decided to review the Privacy Act for the 3rd time since its inception, and that the committee was composed entirely of politicians and that I didn't have high hopes for a positive outcome.

Well, it is worse than even I expected. It appears that the real purpose for the review was to have the Privacy Act changed to allow the government to legally centralize control of all the personal information obtained from citizens who receive government services. This information would come from all sources contracted to provide government services, including independent community service organizations. The ICM (Integrated Case Management) system would be shared across provincial ministries (and god knows who else) since I'm sure they won't tell us who has access. ALL WITHOUT OUR CONSENT.
And the government wants to store the database outside of Canada. I'm sure that would be in the United States, where the Patriot Act would give the US access to all our personal information. That, of course, assumes that they don't already have it. To add insult to injury the “government” hired a foreign company to handle all our personal information. What's wrong with Canadian companies, Canadian people. The government always talks about promoting Canadian companies, Canadian jobs, then hires foreign companies.
Currently the government is only allowed to store our information outside Canada for short periods of time. Why does our information have to go outside Canada at all? As you will see in future blogs, the government is prepared to spend huge sums of our money in collecting our information, why don't they invest in protecting it – inside Canada. Then again, Nancy Napolitano of U.S. Homeland Security did say she wanted more information on Canadians. Maybe this is how it happens.

June 11, 2011

PRIVACY BREACHES

The Acting Information and Privacy Commissioner, Paul Fraser, to his credit, has pointed out the governments inability to protect personal information. This was shown in a report, dated February 9, 2009 (I believe they mean't 2010), from the Office of the Information and Privacy Commissioner for BC, on an investigation on the large-scale privacy breach by the Ministry of Children and Family Development (MCFD). In the report “Commissioner Fraser found MCFD and MHSD failed to make reasonable security arrangements to protect personal information from risks such as unauthorized access, collection, use, disclosure or disposal as required by the Freedom of Information and Protection of Privacy Act (FIPPA). In addition, “Commissioner Fraser found a troubling lack of knowledge within the Ministries about the rules respecting the protection of personal information”. So, not only do they not protect personal formation, they don't even know the privacy rules.
Some of the recommendations in the report by the Special Committee to Review the Freedom of Information and Protection of Privacy Act (based on recommendations of various groups/individuals) are:

Recommendation 20: Amend the Act to allow an individual to consent to the collection, use and disclosure of their personal information by a public body (similar to the Personal Information Protection Act).
“OIPC and privacy advocates....questioned whether the concept of consent was meaningful because of the power imbalance between the clients and providers of on-line, integrated government services.”

This was from OIPC – Cantelon letter 21 Apr 10 – From Paul Fraser under Consent, Collection and Disclosure:
“We strongly disagree with government’s submission that FIPPA should permit collection of personal information with consent. One of the internationally recognized privacy principles is that the collection of personal information must be limited to that which is necessary for the purposes identified by the organization. Permitting government to collect more than is necessary via a consent mechanism violates this privacy principle and would be inconsistent with all other public sector privacy legislation in Canada. Any “consent” would be meaningless given that citizens would not have any genuine or real choice to consent if they want or need to obtain government services.”

As you will note in a later post on the children, this can result in a situation tantamount to blackmail, i.e. give us your consent or we will deny you medical service.

Recommendation 22: Consider holding public consultations on data sharing initiatives.
The OIPC submission, presented to the Special Committee on March 31, 2010, also focused on the privacy provisions of the Act. The submission pointed out that new information technologies enable
data sharing initiatives on a scale and frequency that were never contemplated at the time the Act was drafted. The new ways in which the personal information contained in electronic databases is being collected, used and disclosed in data sharing projects raise significant privacy issues. When there is a bulk disclosure of personal information from a large database of one public body to another public body, citizens usually do not know how their personal information is being reconfigured, who is accessing it, for what purpose, whether it is accurate and how they can access it. This is particularly true where the transferred data is linked with personal information in other databases.
For this reason, the OIPC argued the public must be engaged in discussions around protecting privacy rights in data sharing projects. Its submission recommended that a code of practice be
developed by government in an open and transparent manner with stakeholder consultation through something like a White Paper process. A public consultation process on data sharing was successfully conducted by government and the Commissioner’s office in Britain in recent years.
The Special Committee supports the idea of a consultation process because we see it as a way to educate British Columbians on how the Act works now and how requests are treated by public bodies. We have concerns, though, about the prescriptive tone and broad scope of this OIPC amendment (as well as the one requiring the Commissioner’s approval for data-sharing initiatives).
Our own recommendation to government in regard to consultation is more modest.”

“Recommendation 23: Appoint a Government Chief Privacy Officer.
The OIPC submission also stated that a government-appointed Chief Privacy Officer is urgently required to act as a privacy advocate in the decision-making process and to ensure that privacy is fully
considered and respected in any new initiative. This recommendation had been made by the former Information and Privacy Commissioner, and the current A/Commissioner in his investigation report
into a recent privacy breach.
While the Special Committee is reluctant to create a new layer of bureaucracy, we think there is a need to educate ministries about what they can and cannot do in regard to privacy matters.”

If the public servants haven't learned to read, to take courses or have an interest in protecting privacy by now, or interprets the Privacy Act in a self-serving way, I wonder if adding another layer of government bureaucracy will have any value. I still believe that we need transparency. I believe the public servants need to know we are monitoring them, holding them accountable. We need to know exactly what information is being collected, why it is being collected, specifically who has access, and specifically what measures are taken to protect that information. This should be followed up by independent reviews.

“Recommendation 24: Amend the Act to require that data sharing projects for the purpose of research must be subject to ethics review by an arm’s length stewardship committee.
The OIPC submission suggested too that some form of specific ethics review is necessary and desirable for government’s data sharing activities for the purposes of research. Complementary research-governance measures should be adopted in addition to the approval role for the OIPC. A committee of experts should be appointed by government that would function in a manner similar to research ethics boards of universities and the stewardship committees of the Ministry of Health Services. It would apply the criteria in s. 35(1) of the Act and such other criteria as are considered desirable in the committee’s terms of reference. The committee’s approval should be a mandatory precondition to disclosure of personal information by any public body for research purposes.”

This comes back to transparency and accountability. A committee of unknown individuals, agreeing to share our information with unknown research organizations, for unknown purposes – unknown to the individuals whose information will be shared. Why not recommend that consent be obtained from the people whose information is being shared? Why not identify who the researchers are, who they work for, what type of research they are doing with our information, and who will have access to our information, and who profits. After all, who selects these committees – not us!! Whose interests will these committee members serve? And if everything is above-board, then there is no need to hide this information. I just see this as another form of secrecy, and if you have secrecy you must have something to hide, and that may be fine, if it's your information but it isn't, its ours.

And from BC Office of the Privacy Commissioner - 2010 Annual Report News Release
“The risks to privacy presented by the growth of networked databases is a growing concern for public and private sector agencies, and a key challenge for the Office of the Information and Privacy Commissioner. This message was delivered in the office’s annual report, issued by Acting Information and Privacy Commissioner Paul Fraser, Q.C. today. “The erosion of privacy protection is nothing new, but the nature and magnitude of the risks to privacy provide increasing cause for alarm.”
New technologies are enabling, and driving the creation of more and more personal information data bases. “These systems collect and match disparate pieces of information about us and create a digital persona that not only may we be unaware of, but which may not represent an accurate picture of who we are,” the Acting Commissioner stated. “Yet this information will be used in decisions that affect us. I cannot understate the urgency of building these systems in a transparent, restrained and accountable way.”
Perhaps the first questions should be – do we (the patients, the citizens) need these systems, and who benefits.

I have not heard what the government will do. It can ignore all recommendations, or some recommendation; in essence it can do what it wants.

June 10, 2011

AUDITOR GENERAL

I understand from a newspaper article (The Province, August 27, 2010 pg. A10) that Auditor General John Doyle is in trouble with the politicians. There seems to be a conflict regarding who he works for – the politicians or the people. Fortunately, he believes that he works for the people and keeps doing his job and exposing wrong-doings of the politicians, including the violation of privacy rights. I hope he continues and doesn't bend to political pressure.

There is a question I have regarding his report on the hospital database audit. Mr. Doyle's report says that so many people were accessing patient information that it was impossible to sort out who was accessing the information. Doesn't the CEO Dr. David Ostrow know who his suppliers are and which were accessing patient information? Doesn't the CEO, Dr. David Ostrow, know who was allowed into the “business room” to plug their computers in the database and whose information they downloaded or was this available to anyone walking in off the street, no questions asked?

Madam Justice L'Heureux, of the Supreme Court of Canada, – Dube in R.V. O'Connor stated:
“Respect for individual privacy is an essential component of what it means to be free...When a private document or record is revealed the invasion is not with respect to the particular document or record in question. Rather, it is an invasion of the dignity and self-worth of the individual, who enjoys the right to privacy as an essential aspect of his or her liberty in a free and democratic society.” - R.v O'Connor [1995] 4 S.C.R. 411 at paras. 114, 119 – pg. 17
So, when someone violates your privacy rights they are also destroying your freedom and democracy.
We appear to have a segregated society in B.C., those whose privacy rights are respected in word and in action, and the rest of us whose privacy rights exist only on paper. Which group are you in??

July 22, 2010

ASSAULT

Last night, as I handed out information in front of St. Paul's, I met a lot of supportive people.

However, one man came up very close to me, at first I thought he had been drinking, and I started to back away but he grabbed both my wrists very tightly, holding my arms straight down, and said “You had better find a new activity in life”. He then went into St. Paul's. It all happened very quickly. I didn't smell any alcohol and I believe that he new exactly what he was doing. Later I noticed that I had a red mark on part of one wrist and broken skin.

I mention this because I think it is important that people understand the difficulties and risks that people face when they are peacefully and legally exercising their democratic rights in this country.

May 24, 2010

AUDITOR GENERAL - PARIS REPORT

The Auditor General and the Office of the Information and Privacy Commissioner of BC (OIPC) conducted independent audits of one database (called PARIS) of Vancouver Coastal Health Authority (VCH). I commend them, particularly the Auditor General, for finally exposing the truth (or at least a good part of it) -- that our privacy within the health care system is virtually non-existent. I highly recommend that you read/skim the reports. Even if you don't understand it all, it will give you an idea of how badly our privacy and rights have been violated.http://www.oipc.bc.ca/orders/investigation_reports/InvestigationReportF10-02.pdf
http://www.bcauditor.com/pubs/2010/report7/paris-system-community-care-services-access-and-security

I will reiterate some of the findings from the audits, with a few comments of my own. Please note that PARIS is just one of eight core databases operated by VCH. Patients are referred to as clients.

Privacy Commissioner's Audit:
- “One of the ethical obligations of every health professional is to protect the confidentiality of patient information. The assurance of privacy is essential for patients to be willing to engage in the frank communication with their health care providers that providers rely on to deliver quality care. Patients assume that their personal health information is kept confidential because it is such a well understood hallmark of the provider/patient relationship.” (pg. 5)
The protection of privacy is a fundamental value in modern democracies and is enshrined in ss. 7 and 8 of the Canadian Charter of Rights and Freedoms.2 - (pg. 5)
- “The following types of information are collected into PARIS: Names of clients, contact information of clients, personal health numbers of clients, allergies of clients, employment, funding or eligibility of funding, education, languages, case notes relating to treatment of clients, names of family members or friends of clients (known as “associated persons” in PARIS), contact information of associated persons, whether the associated person is receiving health care from VCH, financial information and social insurance numbers of clients.” (pg. 13)
- Information was illegally shared with other organizations. When the PCO pointed this out, the government just passed legislative amendments making it legal for VCH to share some of the information. (pg. 16) (pg. 27)
- The information provided to clients (pg. 16) by VCH was “incomplete”, in other words VCH wasn't telling everything about what happened to personal information. You will find this to be a recurring tactic in the health care/government system. It appears that the premise is that the less we know, the less we will question, the more we will trust the system and the more they can hide. And, as you will see, there was/is a lot they didn't/don't want us to know.
And, not surprisingly, I didn't find any reference to the audits on the VCH website.
- “VCH does not have a secondary use policy in place to ensure the conditions for the use of personal information for research are met.” (pg. 34) In other words, when giving research organizations personal information, VCH did not ensure that “high standards for privacy and security” were met. The Auditor General found that they was no follow-up to ensure that the information was used and disposed of appropriately.
- I found this information particularly interesting. “An important privacy principle is that individuals should have control over their own personal information to the maximum extent possible. One mechanism that provides an individual with the ability to control their personal information in an electronic system is a “masking” feature. This allows an individual to restrict access to personal information that is collected by the public body. In order for this option to be meaningful, the public body must inform individuals that the option is available; there should not be any barriers for the individual to exercise it; and the individual must be advised of the implications and have access to clinical advice. The ability of a client to mask their personal information is particularly important when its collection is mandatory.” “In PARIS, there is an Enhanced Information Security Client (“EIS”) flag feature in the system that enhances the ability of clients to control their own personal information in PARIS. “ (pg. 35) However, the only people who could utilize the EIS were “staff or family member of a staff person, notable person, and clients who can demonstrate the the PARIS security model does not provide sufficient security.” It's been my experience, through Providence Health Care, that VCH keeps its security arrangements, or lack thereof, secret, so how would anyone know if their information was secure, much less prove it. In essence, staff members and “notables” had rights, the rest of us didn't.
- I had a doctor ask me why I was concerned about my privacy, after all I wasn't important. I tried to explain that I thought I was a damn important person, just as important as anyone else. This was interpreted by the doctor as meaning that I thought I would be important in the future. The concept that I am important now, just as I am, with the same rights as anyone else, was beyond this doctor's comprehension. This attitude seems to be pervasive in the medical system, and I suspect, all government.
- “Because of the large number, and serious nature, of the deficiencies in security, we have chosen not to elaborate on them in this report.” (pg. 37) The Auditor General's report exposes these deficiencies (see below).
- “Archiving records is an effective means to minimize inappropriate access.” “We found that there was no archiving of records in PARIS.” (pg. 42)
- “In our view, the information that is provided to clients about their right to make access requests is inadequate in that it does not inform them about the process for making access requests, the possible scope of the request (e.g. audit logs), timelines, fees and where the request must be made. Improvements are needed to better inform clients about their access rights under FIPPA. With respect to an electronic health record system, clients should have access to the audit logs for their health record so that they are able to monitor disclosure of their own personal information.” (pg. 43)
- “there is so much access to client records that it is impossible to analyze the [audit] reports.” (pg. 51) Except, of course, for those privileged few using EIS.
- “It must be noted that many of the problems were not caused by PARIS, but instead were the result of human decisions in respect of how personal health information would be collected into, made available by and disclosed through the system, which is a human issue.” (pg. 53)
- “We found that VCH is routinely, and without legislative authority, disclosing identifiable data sets to other public and not-for-profit entities...” (pg. 54
- For employee's, “privacy training and education at VCH is inadequate.” (pg. 52) Actually, it appears to be almost non-existent.
Auditor General's Report:
- “ Maintaining the confidentiality and integrity of individuals’ health care records is profoundly important. Failure by health care organizations to properly manage and safeguard this information could have serious consequences, from compromising an individual’s privacy to enabling identity theft or other fraudulent use of personal information to occur.” (pg. 1) ” If adequate controls are not in place, the results could be loss of individual privacy, corruption or manipulation of client information, medical identity theft, or system failure.” (pg. 5) Remember that this system has not been properly managed since its inception in 2001 and this probably applies to all health care information in other systems.
- “I undertook an assessment of a clinical information system used by the Vancouver Coastal Health Authority (VCHA)...In every key area we examined — from the management and assignment of user access to security controls within the health authority’s computing environment — we found serious weaknesses.” (pg. 1) (bolding is mine)
- “Because PARIS users are not granted access on a “need-to-know” basis, sensitive and confidential health care records were accessible to thousands of users who have neither the need nor the right to see the information. Security controls throughout the network and over the database were so inadequate that there was a high risk of external and internal attackers being able to access or extract information, without VCHA even being aware of it. Fundamental controls to prevent or detect unauthorized access to the system were lacking, and monitoring to determine what data exchanges occurred was also insufficient.” (pg. 1)
- “In several areas, the governance and direction that staff needed to build a secure environment were not in place. Staff were not provided guidance on security controls to mitigate risks. The organization did not have an IT security policy and basic security practices (such as building layers of defense within the system) were inadequate.” (pg. 1)
- “Due to the seriousness of the deficiencies, I delayed the publication of this audit report to allow sufficient time for VCHA to address the security vulnerabilities we identified, thereby ensuring that this report would not further expose the system to potential compromise. I have been satisfied with the responsiveness and significant effort that VCHA has put into addressing the most significant problems, in a relatively short time. Over the next months, my staff will continue monitoring the actions of the VCHA in addressing the remaining audit findings. Based on the conclusions of this audit and other work performed by my staff, some of the fundamental security weaknesses identified in this information system may be present to some degree in other government systems. The findings and recommendations reported here should therefore be of use to other organizations in the health industry, as well as in other sectors. Adequate security controls should be built into any system, and it is equally important to undertake regular reviews of critical systems to ensure that they remain sufficiently secure.” (pg. 2)
- “We have not published all the details of the findings and recommendations from the detailed management report, to avoid introducing additional security risks. We consolidated the most significant recommendations from the detailed management report into 10 key recommendations.” (pg. 6)

Recommendations (Please go the Auditor General's Report for the complete version):
“Access is beyond “need-to-know” - Access granted to PARIS client records is excessive, with users in many cases having full, unmonitored access to all client records. ( pg. 6)

System Security is Inadequate – Controls to detect and prevent external or internal attacks are not adequate. (pg. 7)

Security Policies are Lacking – The lack of a comprehensive security policy for PARIS has contributed to the absence of other fundamental security controls in the system and of the processes affecting the network, database, operating system and application security. The overall organizational security culture has not set the right tone for a secure environment. (pg. 7)

The database is not secure - Lack of proper database security controls means that errant data could be input, data could be corrupted, unauthorized viewing or data extraction could occur. There have been several irregularities, including connections made to the production database by non‑production servers; vendors having continuous database access; users gaining access to the database directly through unprotected roles; and support staff having access to powerful database privileges that should be restricted to database administrators. - (pg. 8)

Risk of data leakage - There are insufficient controls to ensure that client information stored on PARIS has been safeguarded from inappropriate disclosure for the personal or financial gain of insiders or external intruders. Logs are not monitored; traffic to the database is not restricted; information extracted from the database is not tracked; default passwords have not been changed; and the database management privileges are not properly restricted. - (pg. 8)

Monitoring is not Adequate – Inadequate visibility, logging, monitoring, analysis and management of audit trails could result in external or internal attacks going undetected. Most logs are not monitored, limited information is collected, and log management capabilities are insufficient for consolidating and analyzing the logs. (pg. 9)

Access Is Not Properly Maintained – Inadequate user ID and password management practices could put the system at risk of unauthorized and undetected access. (pg. 9)

Unsecure network access - Current system settings and practices do not restrict unsecure connections to be made into sensitive systems. Physical connections in meeting rooms allow non-VCHA computers to connect to the internal network and the Internet. Unaccounted-for laptops are able to connect to the internal network, remote access servers are allowing connections to bypass perimeter defences, and Virtual Private Network (VPN) users are granted too much access within the internal network. - (pg. 9)

Inadequate Traffic Control on the internal Network – Within the internal network, there are no access control mechanisms to restrict traffic to critical servers or to reduce the spread of viruses or malicious code throughout the network. (pg. 10)

Record management practices are lacking - No classification system or retention policies are in place to effectively guide or manage the removal or archiving of client records that are no longer relevant. These records therefore remain accessible and viewable in the system indefinitely.” - (pg. 10)

Additionally, on page 20 the report states: “We found that a comprehensive security policy for PARIS does not exist. Only a few security policies are in place, and some of those have only recently been established. In all of the IT areas we assessed, we found little guidance provided to IT support staff to tell them what security controls should be implemented.”
On page 22 the report states “Both IT and application support staff have full, unmonitored access to all information”, and “Open vendor accounts exist, allowing health care data to be copied even outside the VCH at any time.”
On page 24 the report states “We found that that some users with former employment or contractual relationships with the Vancouver Coastal Health Authority are still able to access the PARIS network and its resources.
„. Processes are not always followed to remove or change a user’s access when his or her employment or contractual status changes.
„. We found that hundreds of former users, both employees and contractors, still have access to resources through active application accounts, network accounts and Virtual Private Network accounts.
„. Passwords for powerful, privileged IT support accounts have, in some cases, not been changed even though users who know the passwords have left the employment of the health authority.”

After reading this – major deficiencies in every area, 127 recommendations by the Auditor General, you really need to read VCH's response on pg. 11. I think this is symptomatic of the system – the creation of an illusion. Some quotes from Dr. David Ostrow, President and Chief Executive Officer:
“We also know that safeguarding that information is crucial — not just to comply with legislation, but to build confidence and trust in those we serve.
VCH believes that PARIS has served our community patients and clients well without any demonstrated risk to safety.
As you are aware, VCH has always placed a strong emphasis on the protection and confidentiality of patient/client information.
VCH acknowledges it cannot become complacent in the areas of security, confidentiality and protection of privacy.”

I really think this guy wants an award. There is no apology, no recognition of the damage done. Quite the opposite, he just wants to blow it off, an “oh well, no harm done” and “aren't we wonderful” attitude, as if his words still had value. Major deficiencies in every area, virtually open access to all our information but he says that “VCH has always placed a strong emphasis on the protection and confidentiality of patient/client information” A complete disconnect between words and actions, to put it politely. Really, how disgusting, how reprehensible.
As one woman, who came up to speak to me at St. Paul's, pointed out, that even if the security was made perfect today (won't happen) all our information up to today is “out there”. We don't know who has it, how it's being used, or when it will be used against us. Actually, some people I have spoken to have already run into problems.
Dr. Ostrow's kind of statements I think of as propaganda/brainwashing. If you say something often enough, no matter how far it is from the truth, people will start to believe it. It is the difference between words and actions. It is a recurring tactic in the government system.
The medical/government system has lost and does not deserve our trust. In my opinion, they have lied, manipulated and conned about the status of our personal/medical information. In fact, it appears that that our personal/medical information has never been protected, at least since they started using computers, and probably before then.
When I filed my complaint with the OIPC 6 years ago, I was told that the hospitals had never taken steps to determine if they were in compliance with the Privacy Act. So, to the best of my knowledge, this is the first audit that has been done since the Privacy Act came into effect in 1993. So, it took them 15 years to do one audit.

To add insult to injury, I still have people, who say they work at St. Paul's, tell me that the system is good. One person said that at meetings they are told to “ssh”, they aren't suppose to say certain things that are private. Presumably I am suppose to believe that our information is safe because they have a “ssh” policy (at least at meetings). This is someone who works in the system and who, therefore, must have a good idea of the lack of privacy.
As pointed out by the Auditor General, the systems will evolve to meet changing needs, and “Any computing environment has risks that must be constantly addressed and managed.” If the medical system has such a complete lack of concern on security issues now, how can we trust that, even if forced to meet minimum standards today, they will do what is required to meet future minimum security standards.. And again I reiterate, only one core database in one health authority as been audited.
“They [VCH] have told us that the most significant deficiencies identified have been fixed.” (pg. 6 – Auditor General) First of all we cannot trust the VCH to tell the truth. Have they fixed the major deficiencies? We don't really know because it has not been checked by an independent source and VCH has repeatedly lied to us about the security of the system.
The OIPC and Auditor General offers “recommendations”. They will monitor VCH over the next year to see if VCH implements the “recommendations”. Again, I assume they will rely on VCH's “word”. Will we be told if VCH doesn't implement some of the recommendations? Quite honestly I doubt it.
The rest of the medical system is presumed to be as bad or worse. Who is going to ensure that they are “fixed”.
While I commend the Auditor General on the audit, I want to point out that I take exception to a statement by the Auditor General that “security is not the main focus of the health care system”, implying that it is understandable that they made these horrendous errors. People walking or driving don't have the traffic laws as their main focus, but will be fined and even jailed if they break the laws. Most people's main focus is earning an income, not paying taxes. Yet, they will be fined and even jailed if they break the tax laws. VCH will not be fined (of course they would pay with our money anyways), no one lost their job, was disciplined or was charged. These people who have been violating our rights for years will not be punished in any way. That's how much our rights matter.
When there is no trust, it leads one to wonder if some of the information collected illegally was done so because people, who had illegal access to our information, wanted it. Are tests, not necessary to the patient's health care, being done for other purposes? Etcetera.
Also, has anyone heard from the doctors or nurses, etc. or their associations or unions? Have you heard of any of these standing up and saying this is wrong and needs to be fixed? I haven't, with the exception of a report, from the doctor's association, outlining their concern regarding the central health database, and I don't believe it addressed the essentially non-existent security in the medical system. I have had some doctors, etc. come to me and tell me that I'm wrong, that our information is safe. But I have also had doctors, etc. tell me, quietly, that I was right. One doctor told me that the loss of information from the hospitals wasn't a leak but a flood. So true. But the reality is that one person, such as myself, shouldn't have to spend 5 years, and counting, standing in the streets, bringing this to people's attention, taking all the abuse, when so many people knew the truth.

Suggestions:
Please note that I hope these suggestions are just the start of an open discussion by the people of this province on how best to make the medical system, and the protection of our information, more transparent and accountable to us (ie. all the people).

1. We need to have the medical system continually monitored
2. We need someone who is independent of the government to continually monitor the health system. PCO calls itself independent but when the privacy commissioner is appointed by the politicians and your career advancement is dependent on the politicians, you are not independent. In addition, PCO has to stick to looking at what is legal, what is allowed under legislation. We need someone who can look past that, to what should be made legal, or what legal rights should be revoked, and what other methods/systems could be used to accomplish the same purpose (ex. sharing information) that would not impact our privacy.
3. I am concerned with the frequent reference in the OIPC report that if the hospitals want to share information, just have yourself designated as a health information bank under the E-Health Act, which legally allows sharing. I think this needs to be reviewed.
4. Possibly this person(s), group(s) could be elected. I would suggest we have more than one person/group reviewing different hospitals or they could alternate health authorities so a person (group) does not become embedded. Their findings could be put on a website and/or their could hold public forums to hear people's concerns and experiences.
And for those of you who would like to accuse me of doing what I do for reasons other than “protecting my rights”, I would not be the slighest bit interested in auditing the hospitals. And my word has value.
5. We should know about any person/group who is looking into privacy issues in the health care sector, who they are, who pays them, and the scope of their mandate. They should not be allowed to hide in the shadows.

6. Information should be shown on a website and/or other means, accessible by the public, sufficient to allow the public to know who has access to their information and under what circumstances. For example, The OIPC has recommended a role-based access control system. “role-based access control (is) capable of mapping each user to one or more roles, and each role to one or more system functions.” (pg. 20). This mapping could be provided to the public.
7. The public should be told, via a website and/or other means, what information is being provided to what research organization for what research. If everything is above board, then there is no need for all the secrecy. The general topic of the research would probably be sufficient.
8. As recommended by the OIPC, people should be informed what to do to mask their personal information.
9. As recommended by the OIPC clients should receive a copy of audit logs automatically.”(pg. 42). Plus, there shouldn't be roadblocks to a patient accessing their medical information. One of the most frequent complaints I hear, when I am outside St. Paul's, is how difficult it is to get access to their own information. Interesting isn't it, when everyone else has access. I also think of this as a tactic to make it appear that the front door is locked tight so people wouldn't notice that the back door is wide open.
10. One central committee should prepare the forms for the health authorities. This would help to ensure that all forms ask legal questions, are easy to update and audit, and would save taxpayers a lot of money by reducing redundancy.
11. Efforts should be made to determine who has illegally collected our information, and have it deleted, after informing the “client”. A law should be passed which states that anyone having and using patient information, unless directly related to patient care, will be severely punished. But I don't know what you do about the information that has gone out of Canada.
The medical system has lost all right to be trusted. I now operate on the basis that if they can't prove, it isn't true.
And, in the medical system, the only safe information is that which isn't given or is false.

May 10, 2010

WHAT'S HAPPENING - GENERAL

A lot has been happening in the last few months. For example, an audit showing the appalling lack of privacy protection of our medical information, Gordo et al wanting all our information (medical plus all our other information) in a database in the US, etc. So, there will be several new postings in the next short while, as soon as I have finished reading all the reports.

April 13, 2010

REVENUE CANADA

I am going tell you about a privacy problem with Revenue Canada. The story is true but I will use Party A and Party B to protect the privacy of the people involved. It illustrates so well the huge gap, the contradiction, between what the government (any level of government) says and what it does.

Party A received a notice from Revenue Canada stating that authorization had been given to Party B to access Party A's tax information, in accordance with the form signed by Party A. Party A immediately phoned Revenue Canada informing them that Party A had never signed any such form. Revenue Canada immediately removed Party B's authorization to access Party A's supposedly confidential information.

Party A then asked for more information, such as a copy of the form, how it was submitted (by mail or fax), etc. because this involved potential violation of privacy rights, fraud, forgery, etc. Party A was told to fax a request and given two fax numbers. A fax was sent to the first number and when a reply wasn't forthcoming, a fax was sent to the second number. Two months later Party A still had not received a reply. Despite contacting Revenue Canada several times and explaining that the situation involved a potential crime, requesting to talk to someone or be given an email to contact someone, no help was given. There was no one that Party A could talk to, or email, regarding this potential crime.

Finally, Party A sent emails to the Minister of National Revenue and the local MP (who was from a different party). No response was ever received from the Minister of National Revenue but the local MP was able to get an answer from the local Revenue Canada office.

An “investigation” was conducted, and Party A was told that Party A's identifying number had been inadvertently entered on the form but Party A's information had never been accessed. Revenue Canada obviously hoped that would be the end of it.

But Party A pointed out the list of errors, the problems in their system:

1. Party A's identifying number was entered "in error" on a consent form (or so it was claimed).

2. The information was input into Revenue Canada's system even though the other information on the form did not match the identifying number.

3. Two faxes were sent to Revenue Canada and "lost".

4. Despite the fact that this was identified as a potential CRIME, there was no one Party A could speak with. Was this an error on the operators part (because Party A spoke to several) or was this policy? If this was policy, why does Revenue Canada have a policy that a person cannot talk to someone about a potential crime

5. Revenue Canada stated that the consent form was processed at the same time that the notification letter went out. In other words, access was granted before there was time for the notification letter to reach the recipient and allow the recipient to take action. In other words, someone wanting to access another person's information has however long it takes for the notification letter to reach the recipient and have the authorization cancelled and, if the recipient is away, even longer. Is it policy to allow access at the same time the notification was sent out or was this another error?

Party A asked why the mistakes were made and what they were doing to fix the problems? Revenue Canada's response was that they were committed to providing the best possible service but refused to answer the questions. This is also the government that says that they will get tough on crime, but in fact don't even want to hear about it.

Do you see the difference between the words and the actions? Do you really think the provincial government and its agencies care, any more than the federal government, about the protection of your privacy?

January 10, 2010

HEALTH CARE IS NOT A GIFT

People have said to me that we should be grateful for our health care system and not complain because other people don't have as good a health system. They speak as if this is a gift from the hospitals. It isn't. The people of this province and this country, in their wisdom, chose this system. The citizens of Canada pay for this system because they want every person who needs health care to have access to it. This health system belongs to the people. The medical system, and the people who work in the medical system, work for the people of British Columbia and Canada. If the people who fund the system want to know where their information is going, why won't the people we employ provide it?

Tracey Tyler, wrote in the Star, Jan. 14, 2009, of a court ruling in Ontario (in this case regarding the Toronto Police Services Board) that required , “municipal government institutions to produce any electronically stored information the public has a right to see, even if it requires using new technical expertise to develop new software”. So, if the police are required to provide information that the public “has a right to see”, why aren't the hospitals?

November 11, 2009

PRIVACY ACT REVIEW

The government has decided to review the Privacy Act for the 3^rd time. The committee reviewing the Act is composed entirely of politicians. Needless to say, I don't have high hopes for any beneficial outcomes (for the general public).

Even if the politicians actually did make a beneficial change, what do we gain. If you don't implement the Privacy Act, it is nothing but useless writing on paper. As we have seen, the government seems to be one of the worst organizations for ignoring the Act. When I first asked questions about privacy at the hospitals, the hospitals had not brought themselves into conformity with the Act, even though the Privacy Act had been in effect for 13 years. When I made phone calls to the hospitals inquiring about the Privacy Act, the people I spoke to had no idea what I was talking about. I was asked what I meant by the Privacy Act, what was the Privacy Act, what is a Privacy officer, etc. These were front line people dealing with the public. So, if after 13 years, hospital staff had no idea what the Privacy Act was, how could they be expected to implement it, to protect our privacy.

Have you walked into a retail store, or an insurance office, etc. and been asked questions? If you ask them why they need this information, do you get a straight forward answer, as is your right under the Privacy Act. Or, do you get answers such as “the computer needs it”, “everyone asks these questions”, “I don't know so just answer it otherwise I won't sell you the product”? In most cases, you have to be very persistent to get a real answer; in some cases even that doesn't work. Most people (general public) aren't that knowledgeable regarding the Privacy Act and/or assertive. And those who are, I suspect often get tired of the fight or, like me, just try to minimize buying anything new. So, the end result is that people's privacy rights are not respected or protected because the Privacy Act is, for the most part, not enforced.

I find it ironic that the politicians will be commemorating Remembrance Day, commemorating the people who fought and died for our rights (including our right to privacy), while they make a mockery of those rights.

I continue to receive threats, some subtle and some not so subtle, while handing out information in front of St. Paul's. For example, I was told that if I came back again I would be given something to be really concerned about (I have been back since). I was told by another person that people who do what I do (peacefully exercise my democratic right to hand out information) “often go missing”. I will not be out as much during the winter months but if I am not in front of St. Paul's for any length of time -- I may have gone missing. This is our democracy.

October 8, 2009

RIGHT TO KNOW WEEK

Were you aware that the government had proclaimed September 28 to October 2 as “Right to Know Week” in BC. The government recognizes that the BC Privacy Act grants the people of BC a right of access to information in the custody or control of public bodies.

Ok, I'm back. I had to take a break. I was laughing so hard I couldn't type. I'm sure the politicians are laughing equally hard at the “Right to Know” statement and anyone who actually believes it. “Right to Know” week – what I can only consider as another hypocritical farce brought to you by the government of BC.

August 8, 2009

SECURITY GUARDS AT ST. PAUL'S

Today, as I stood outside St Paul's handing out information, I was approached by two of their security guards, two big guys, who stood in front of me and told me that I was on public property and did I have a permit. Believe me, this was not said nicely; it was said in a tone and manner that I felt to be very threatening. One guy told the other to contact ? (I didn't catch who they were phoning), as far as I knew it was the police, athough I wish they had been called. I was very confused because I knew that I didn't need a permit. I thought they mean't that I was not allowed to have my things on St. Paul's property so I moved my papers and petition off the ledge and put them on the sidewalk and said “I am on public property, now get the hell out of my face”. They did not move, they didn't explain what they were doing, just continued with their phone call and I felt as if I was about to be thrown in jail or charged with some crime although I had no idea what that would be.

A few minutes later they walked up the street and talked to someone. This person then walked towards me and told me that he had explained to the security guards that I was on public property and that I had a right to be there, and they didn't know that. It would appear that he was their supervisor, although he never introduced himself. He did have courtesy to apologize but then said “no harm done”. Well, there was harm done. When you threaten someone, when you treat them like a criminal, when you demand information you have no right to demand, especially when the person has done nothing wrong, there is harm done. And I am sure the people walking by thought I had done something wrong by the way I was being treated.

The three boys made a rapid retreat into St. Paul's.

June 10, 2009

CHANGING THE WORLD

A woman came up to me and claimed that she worked in a hospital (not St. Paul's) and said that everything was corrupt so why was I worried about the hospitals. I find it sad that someone, and I'm sure there are others, believes that everything in our society is corrupt. Have we really reached that stage? But, whether you believe that “everything” is corrupt or if you believe that just some things need to be fixed, rather than give up, is it not better to strive to change things?

She also said that I cannot change the world. I don't think I'm trying to change the world, only a very small part of it. But on the other hand, yes I can change the world by doing something positive. I can do one small thing, even if it's just raising awareness, and someone else can do one small thing and so on and change will occur.

April 12, 2009

E-HEALTH

According to BCGEU, the BC government is planning to outsource, to a US company, the operation and maintenance of the mainframe computer servers that contain all provincial documents and e-mails. Does this include your health information? Just in case it doesn't, another US company will maintain the provincial health data base.

As early as June 2009 the BC Government will implement its provincial database collection of your personal/medical information. The website www.optout.ca provides detailed information, information that should scare you.

This site will tell you that the Province has not stated who will have access (although apparently it will include the government), and whether it will be given to third parties. It does say that the Province used a US-based multi-national company which will be subject to the Patriot Act, allowing the US Government to access this database.

Will it save money? It's possible. Because I'm sure a lot of people, who need medical care, will not access the health care system because of privacy concerns.

A few excerpts from a talk given by Michael Vonn of the BC Civil Liberties Association (Database Nation and Health Privacy)-

“And just so you are clear about the scope of the access, the plan is ultimately for a Pan-Canadian e-health record system. Canada Health InfoWay -- which is an organization which receives a lot of money from the federal government, but is not “government” for the purposes of access to information laws, so is completely unaccountable to citizens – exists solely to promote centralized electronic health records, first provincially and ultimately linked so as to be accessible nation-wide.”

“....this is ultimately the thin edge of the wedge. BC’s electronic health information infrastructure is meant to anchor an integration project called the Information Access Layer, which includes the Integrated Case Management Project. This is a massive information-sharing project meant to encompass the entirety of social services in British Columbia and to link information about us from the Ministries of Employment and Income Assistance, Children and Family Development, Health, Education, Justice and the private sectors contractors for all of the above. The government has already issued an RFP, (a Request for Proposals) for this project.”

Please read this article in full, plus “So, what the heck is eHealth”, as well as the other articles. It's your health, it's your privacy, or at least it was. You can choose to do nothing and give away your rights or you can choose to try to protect those rights.

November 4, 2008

BC NURSES

According to a Vancouver Sun article, by Chad Skelton, September 17, 2008 “BC nurses are being allowed to quietly leave their jobs, even under the cloud of accusations of drug misappropriation, abuse and rank incompetence.” They have not been formally disciplined , prosecuted or fined and may apply to return to nursing. No details of their misconduct were made public. This is another example of the shroud of secrecy the medical system has around its actions. Also, if hospital staff are not being disciplined for these offences, how likely are they to be disciplined for violating a person's privacy??

However....An article in the Globe and Mail, by Catherine O'Neill, October 17, 2008, states that Alberta is putting the “often sensitive and private” personal health information online. I read that Ontario is doing the same but on a limited, trial basis. So, hospitals certainly don't mind putting your information online. How safe do you think that is??? How long before it's in BC???

October 12, 2008

PHARMACIES

A man, who said that he worked for the computer section of a hospital authority, stated that pharmacies have access to our medical records. He said that you could put a password on your record at the pharmacy so no one in the pharmacies could access your records without this password. I had heard something very similar last year from a person who I understood to be a pharmacist. He said it was the way of the future and implied that we had no say in it.

I visited a couple of pharmacies and they denied having access to our medical records. The people at the pharmacies said that they only have access to the information provided by a person to that individual pharmacy. I will continue to monitor the situation and find out if it changes.

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One of things I have noticed, when giving handouts, is the range of people interested in the privacy problem. The people are not only from all over BC but from other provinces and countries. People from other provinces expressed an interest in learning if their province had similar problems.

The European's discuss how the different countries protect people's privacy. Some European countries appear to have really good rules for protecting patients privacy. Many Europeans expressed disappointment that we would be having these privacy problems as they had heard that our medical system was good.

September 4, 2008

THREATS

One of the things that surprised me, when giving people my handouts in front of the Catholic hospitals, is the number of threats that I have received. I have not proposed blowing up the hospitals, I have not engaged in civil disobedience, instead I have legally exercised my democratic right to question and to inform people. Yet, I have received comments such as “Give them what they want or die”; a couple of times I was told that I am probably now in the hospitals records as a troublemaker and that I may be given a very difficult time if I go to the hospital; I have heard comments such as “I hope you never, ever have to use their services” (implying that if I do I will receive substandard or worse “care”). I have heard quite a number of variations on these threats. Will my health/life be in danger if I go to one of these hospitals? I don't know. However, I do not intend to go to a Catholic hospital again for a number of reasons, nor will I ever again step foot in a Catholic church.

What concerns me is that not only should an individual expect to receive the same care as everyone else regardless of their beliefs, politics, religion, nationality or because they stand up for what is right, there should not even be a perception that a person would receive inferior care.

Of course, money will continue to be taken from my pocket to pay the wages of the hospital administrators and staff and otherwise support these hospitals.

I won't describe the other abuses that have been heaped on me. But it is telling that these people support the medical/catholic system as is. I have obviously hit on a very, very sensitive nerve. I can only wonder why this topic is considered so sacrosanct that these people would do the things they do and say the things they say.

The other side of the coin are the people who have offered their support because they are concerned, even fearful, about who is receiving their personal information. And they agree that we have the right to know.

September 3, 2008

CRIME

I have had a few people say to me that I shouldn't be concerned with whom the hospital shares our information. After all, anyone can get all your personal information off the internet. Well, it appears this is not true. If it were, there would be no need to use methods such as buying the information from employees, as noted in the article below.

National Post, August 23, 2008, pg. A6 [bolding is mine]

Personal and financial information is becoming just as attractive as cocaine and marijuana to Canada's organized crime groups.

The problem of identity theft and fraud has become such a concern to police who investigate organized crime that it is the main focus of Criminal Intelligence Service Canada's annual report.

“As we move more and more to the Internet and the technology being used, the risks are increasing. A lot of the public are not very careful about their identity,” said Commissioner Elliott....

Inspector Roberty Chartrand of the Montreal police said investigators are noticing an increase of cases in which employees of companies and institutions are being tempted by the lure of easy money and selling large quantities of personal and financial information.

“We've noticed over the past year that there are a lot of people involved in different companies who give information from the inside to organized crime members. It's not necessarily on the street [level]. It's more like companies, government, it's almost everywhere,” said Insp. Chartrand, who is also head of Quebec's criminal intelligence bureau.

“It's a pretty new phenomenon for us. It's a nationwide problem.”e people are not very careful about their identity. But a large part of the problem are the companies/organizations, such as hospitals, who demand information they do not need and who refuse you service if you do not provide it. Obviously, the more companies/organizations that have your personal information, whether you give it to them directly or it is given by companies/organizations such as hospitals, the greater the risk.

This is why we need to know with whom our information is being shared, how much is being shared and the circumstances. We need to monitor that our information is being shared appropriately and that the appropriate safeguards are in place.

Hospitals and Privacy

Thursday 4 February 2016

4. New Postings

December 27, 2015

October 10, 2015

Collection, use and disclosure of personal information

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