In the context of societal transformations driven by digital advancements, it is crucial to explore avenues for articulating public policies regarding secondary use of health data that address citizen concerns. Transparency and recognition of autonomy in data sharing choices are key for the acceptability of such practices. Through constructive dialogue, we will examine parameters for framing a digital approach that places individuals at the forefront of decisions regarding their health data. This portal will blend information with meta-consent, offering a dynamic model for individuals to choose their level of information and consent preferences for data use in research. To achieve this goal, we engage in collaborative efforts with the population, particularly those from underrepresented research groups, employing a qualitative research design across multiple phases inspired by participatory research.
The funding requested will support two phases of activities: group discussions and individual meetings to gather perspectives from specific populations. Ultimately, we aim to propose a viable solution aligning with Obvia's priority orientation of "Improving access to data while respecting individual rights." To this end, we will draw upon three sources of evidence to formulate concrete recommendations for operationalizing Article 6 of the new Law 5. Firstly, the research will integrate findings from ongoing studies. Secondly, results from surveys conducted in this project will be synthesized. Finally, these data will inform recommendations crafted with our multidisciplinary advisory committee.
Chercheurs responsables
Annabelle Cumyn
Jean-Frédéric Ménard
Co-chercheurs
Jean-François Ethier
Adrien Barton
Collaborateurs
Emmanuel Bilodeau
Denis Boutin
Annie Poulin
