Use of data from the electronic health record for health research : Utilisation des données du dossier de santé électronique pour la recherche en santé : défis en matière de gouvernance et approches possibles

The views and opinions contained in this document are those of the author and do not necessarily reflect the views and opinions of the Office of the Privacy Commissioner of Canada, or of the Government of Canada. [...] The reader who is familiar with these uses may skip to Section 2. Section 2 identifies a number of inter-related challenges in the governance of research use of health information generally, and some novel challenges in the context of the interoperable EHR including: − The richness of the linkable person-level data required for most research makes it virtually impossible to sufficiently de-identif [...] It also calls for a re-conceptualization of the primary uses of health information to include the management of the health of individuals and populations, in addition to management of the health care system, including research that supports these uses. [...] In 1981, the member countries of the Organization for Economic Cooperation and Development agreed to these principles, which are now are at the core of most of the privacy legislation in the Western world. [...] The expectation of researchers is that the advent of the common interoperable EHR will increase further the speed and efficiency of research, and enable the answering of a much greater breadth of health- related questions.