Kim McGrail is the Scientific Director of Health Data Research Network, a CIHR funded initiative whose work in the health data space has implications for, well, everyone living in Canada. And they’re keen to involve the public not just in getting input, but in providing guidance into key decisions. HDRN’s work is both technical and somewhat conceptual: their aim is to support researchers to better access health data for research from multiple sources and regions, while respecting local, regional and Indigenous rights, cultural practices and laws.
Public engagement in this context may seem straightforward, but it’s hardly so. In this episode, we talk through some of HDRN’s challenges and opportunities related to understanding public concerns related to collection, use and sharing of health data. Although we touch on some of the operational and technical details of HDRN’s work, our primary focus is on the use of deliberation as an engagement approach. And how it’s difficult to talk about engagement at a pan-Canadian level without also considering democratic ideals and how we might navigate living together as a diverse society.
This series is supported by the Public Engagement in Health Policy project, which promotes research, critical reflection and dialogue about engagement issues that have a health and health policy focus. Learn more about this Future of Canada project at engagementinhealthpolicy.ca