Critics of “e-health” are constantly harangued by two charges — that we are, one: “anti-technology”; and two, conspiracy theorists. Just briefly regarding the first charge, critics of e-health do not require that medical records be confined to either stone tablets or papyrus. If e-health was merely about records being electronic rather than paper-based, there would be no critics. The problem is not computers, but data warehousing and access control.
E-health, as it is rolling out in Canada, has patients’ information aggregated into vast electronic repositories controlled not by health care providers subject to patient consent, but by government. As the Canadian Medical Association recently admitted, because health care providers do not control access, they cannot guarantee medical confidentiality for any patient data that flows in an electronic health record.
While few people are sanguine about the wholesale undermining of medical confidentiality, there remain many people who are convinced that the pros will nevertheless outweigh the cons. Granted, some of this confidence is eroding as the media begins to report on research that is countering the fantastic projections of e-health’s promised benefits and cost-savings. A typical stance at this juncture is that the benefits may have been oversold, but the government must at least believe that patient outcomes will be improved or why are we investing billions of dollars to amass everyone’s health information?
For many years GeneWatch in the UK has been giving people a simple, compelling and well-researched answer to that question: to sell the data to industry.
The straightforward business plan for the UK’s e-health program involves linking all patient records with a national DNA database to allow Britain to take the lead in commercializing the human genome and using the vast repository of patients’ medical information for genetic and medical research which would be achieved by the government giving patient data to industry. As Ana Nicholls of the Economist Intelligence Unit stated, the race is on to make patients’ DNA available to researchers and, because the measures in the UK to link patients’ DNA data to their medical records for research are controversial, government will “have to sell the medical and economic benefits hard to some patients.”
Is the commercialization of patients’ medical information a driver in Canada’s e-health development?
Here is Colin Hansen, British Columbia MLA, in a special editorial in the Vancouver Sun on March 14, 2012 entitled “Unlocking our data to save lives”:
In British Columbia we are over-looking a vault of public treasure… It’s one of the best collections of health data anywhere in the world.
British Columbia is already known globally for leading-edge health research. The research community adds hundreds of millions of dollar to our economy. But we limit researchers’ access to this data, because of concerns about protecting privacy that provincial regulation now makes moot.
It’s time we proactively opened this BC advantage to health researchers and research funders locally, nationally and internationally.
It looks like the sell is on.
As Ross Andersen, security research expert at the University of Cambridge says: “There’s a huge row brewing over the new [U.K’s] government’s plans to centralize medical records; the cover story is giving us access to our records online while the real agenda is to give access to drug company researchers.”
If Canadians don’t like this vision, we’d better get our own huge row brewing.
About the Contributor
Micheal Vonn is the Policy Director of the British Columbia Civil Liberties Association, a Board Member of the Canadian HIV/AIDS Legal Network and an Advisory Board Member of Privacy International.