The federal government should introduce comprehensive legislation to protect the privacy of medical records, says a major report prepared by experts from across Canada.
The legislation should stipulate that a person's consent is required for access to their medical records and that the individual owns such information, says the report by the National Conference on Health Info-Structure.
The conference was convened in February to examine proposals for a national health data network which would make the medical records of Canadians available online.
The proposal has sparked strong interest among health researchers and information-technology companies but a lot of concern among privacy advocates.
The report suggests a national health data network is "full of potential" to improve the quality of health care in Canada, but the privacy issue must be dealt with first.
"Information is a fundamental commodity", it says. "Personal health information may be one of the most valuable of all, with large sums of money at stake in its commercial use."
"Conference participants reached a consensus that while health information may be collected for one purpose it must not be used for unauthorized secondary purposes - whether by governments or universities or companies seeking profits."
Currently medical records are not subject to federal privacy legislation because health is in provincial jurisdiction. Quebec is the only province where medical records are protected by privacy legislation.
Federal Privacy Commission Bruce Phillips has stated strong concerns about the proposed data network.
"The loudest voices supporting the network are those seeking access to confidential medical records", said Phillips in his most recent annual report.
"Making patient information available online (and integrating it with socio-economic data to create patient profiles) risks turning patient care into a 'spectator sport'."
Advocates of the network say information could be retrieved only by authorized users but it is not clear who the authorized users would be, or what the conditions for use would be.
The National Conference on Health Info-Structure recommends work on the network proceed, with public consultation to address privacy concerns.
"White potential violations of privacy were a major concern to the conference delegates, they also recognized society's 'need to know'."
It says the network could bring an economic benefit: "We will be able to sell our expertise to others around the world, thereby creating jobs for Canadians."
Michael McBaine of the Canadian Healthcare Network, a health lobby group, said Ottawa appears to be more interested in commercial spinoffs than in public health.
McBaine said for-profit information-technology companies are included on the council advising Health Minister Allan Rock on the issue, and called this a conflict of interest.
"You should be designing a system for public health objectives, you shouldn't be designing it for people who stand to gain through financial contracts in the development and delivery of the system."
The National Conference on Health Info-Structure, held in Edmonton, was co-hosted by the federal Health Department and the Alberta Health Department.
It included representatives from provincial governments, industry associations, health lobby groups, universities, and companies.