Below is a Letter to Government sent several years ago at the outset of development of a medical record system in British Columbia - my worst concerns have come true. The data collected is considered the property of the government as opposed to being the property of the patient. People have no control over medical records, if you ask to have data removed they refuse. The records your family doctor keeps are electronic now, so what the doctor and perhaps one other person use to see - all medical personnel see now - what happened to patient doctor confidentiality. There are no easy means to opt out, you should have been requested to opt in. This is a part of a general erosion of privacy and liberty in British Columbia and Canada generally - we need to be alert and insist that our private lives remain private as we wish them to be.
The advantages associated with the development of centralized medical records are immense and as such, I am a reluctant supporter of their introduction. As an individual greatly concerned with the encroachment of government into peoples personal lives and having witnessed the miss-utilization of other legislation, the introduction of electronic medical records is being considered with extreme trepidation. When one considers abuses of such data, the recent loss of British medical data by loss of a hard drive or like Safeway's selling of pharmaceutical records to insurance companies in the United States, the examples are endless; this trepidation is most certainly justified. In Canada, we have enjoyed a relatively pristine history with respect to medical discrimination, yet present are a few skeletons in our national closet, such as state sterilization of person's afflicted with none - genetic handicaps. When we dare to cast an eye to Europe's recent history and imagine the implications of this information in the hands of people gripped by the most sinister ideology, one begins to wonder whether the exercise is prudent at all. It is only the presence of a massive volume of information that is presently remaining un-captured and the promise that information offers for our population's benefit that compels this action; paradoxically, in BC we have all the exposure to centralised medical records and none of the benefits. The people responsible for the design of the systems associated with the capture and storage of this most sensitive data must be cognisant of the fact that in the contemporary context, this exercise seems benign enough, but history is full of examples of the errant use of such information.
It is a most fundamental right to refuse medical treatment and by extension, one should be able to refuse to have medical treatment recorded. A citizen should be allowed to retain control of their medical data. At present databases administered by medical professionals provides some insight to how causally the stewardship of such sensitive data can be. Presently any prescription you purchase in British Columbia is captured in the Pharmacy database and any pharmacist in the province with your name can search your records. You can write a letter to the government for a copy of your medical billing records and they are sent to you via the mail, absent any verification of who gets them at the point of pick up. We need to extend at least the same level of security to medical data as we do our financial data. If people want access to my bank information they need my bank card and a P.I.N. The technology is in place to extend an individual control over their personal data and this technology must be accessed, especially in the case of sensitive medical information.
At the risk of being cynical, I have little confidence that people are taking seriously enough the implications of such data systems in the context of the full backdrop of human history. There is complacency, a casual sense it will be ok by governments. This is most alarming. There is a generalised acceptance of paternalism on the part of the populous that prevents people from arousing from apathy to challenge these kinds of developments.