COLLECTING MEDICAL 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.

  1. 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.
  2. 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.
  3. 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 28th to October 5th, 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.

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