Research Governing Committee: Building a Governance Model that includes both Patients and Providers as Partners
Electronic health information has been a topic of much discussion as Canada is navigating the potential of harnessing big data to improve health systems. Diabetes Action Canada has developed the National Diabetes Repository using encrypted, de-identified data from Ontario, Quebec, Alberta, Manitoba, and Newfoundland to provide evidence-based answers to research questions focused on improving the health of those living with diabetes. To ensure that the use of this data aligns with the vision and mission of Diabetes Action Canada and that research studies have appropriate ethical approval, a Research Governing Committee was established. This Committee membership is comprised half of the persons living with diabetes and the other half of primary care physicians, researchers and experts in ethics. To assure the confidence of both patients and providers in the decisions made by the Committee, eight guiding principles were established to guide the responsible use of this data.
We are excited to announce that process of developing this governance framework and guiding principles have been published April 20, 2019, in British Medical Journal Open, entitled “Participatory governance over research in an academic research network: the case of Diabetes Action Canada”. This paper describes the added value over-and-above existing scientific and ethics review processes, of a strong patient perspective and contextual integrity to health data usage in research.
Link to this article here