The Council of Canadian Academics released its report Accessing Health And Health-Related Data in Canada on 31 March 2015. A strong and comprehensive piece of work, this report—which was requested by the Canadian Institutes of Health Research (CIHR)— represents the efforts of a 14-member expert panel, chaired by Andrew K. Bjerring, former President and CEO of CANARIE Inc. In its report, the panel assesses the current state of knowledge surrounding timely access to health and health-related data- key for both health research and health system innovation.
Despite the work of multiple experts, and input from additional experts (including from the Office of the Privacy Commissioner of Canada) who acted as reviewers, the approach to privacy taken by the report is a disappointing one.
The starting point seems to be the presumption that data must be shared and that its sharing is of great value, while privacy concerns are primarily an issue of regulation of data management rather than active protection of individual privacy. For instance, the value of associating multiple data related to the same individual is privileged over the privacy risks of such association and data mining, with the report suggesting linking the pieces of information prior to de-identification in order to preserve the data mining potential – a stance which privileges research outcomes over the protection of an individual from data mining. It is difficult to reconcile this with a key finding that “the risk of potential harms resulting from access to data is tangible but low”.
The sharing of health data today in Canada is a fait accompli – the Canada Health Act mandates that medical professionals (doctors, physiotherapists, pharmacists etc.) turn over this sensitive information. The question is whether de facto de-identification and information sharing is sufficient to protect privacy, and, in fact, whether that protection is even the end goal. This report and its suggested approaches are aimed more at managing privacy concerns (e.g., via development of a privacy review board similar to a research ethics review) than about actual privacy for Canadians.