The following sessions led by members of HDRN Canada’s Executive and Leads teams have been accepted for the 2021 Annual CAHSPR Conference, “Hindsight, Insight and Foresight”.
Wednesday, May 19, 2021
The Canada Health Data Research (HDR) Alliance – increasing the “findability”, accessibility and utility of important Canadian data assets
1:00pm to 2:15 EST
- Nicole Yada, ICES and HDRN Canada
- Dr. Michael Schull, ICES and HDRN Canada
- Dr. John McLaughlin, Dalla Lana School of Public Health, University of Toronto, Canadian Partnership for Tomorrow’s Health (CanPath)
- Dr. Andrew Costa, McMaster University, Canadian Longitudinal Study on Aging (CLSA)
Summary: HDRN Canada is establishing the Canada HDR Alliance to strengthen relationships with research groups interested in expanding data availability and improving Canada’s health data landscape. HDR Alliance membership is focused on partners with large, multi-jurisdictional cohort, clinical trial, and/or clinical data collections with the authority and intention to link and make data available to researchers. A project-based pilot approach is starting with the Canadian Partnership for Tomorrow’s Health (CanPath) and the Canadian Longitudinal Study on Aging (CLSA), two longitudinal, consented cohort studies with participants across Canada.
Health Data Research Network Canada – Outputs, Outcomes, and Getting Involved
2:45 to 4pm EST
- Dr. Lisa Lix: Professor, University of Manitoba; Lead, Algorithms and Harmonized Data Working Group, HDRN Canada.
- Juliana Wu: Manager, Data Access Program, Canadian Institute for Health Information (CIHI); Lead, Data Access Support Hub (DASH) Working Group, HDRN Canada
- Dr. Amy Y. X. Yu: Stroke Neurologist, Sunnybrook Health Sciences Centre; Assistant Professor, University of Toronto
- Dr. Scott Garrison: Associate Professor, University of Alberta
Summary: This panel session will provide a real-time demonstration of the resources available through HDRN Canada and give examples of their uses in current health research projects. Leads for the Data Access Support Hub (DASH) and Algorithms & Harmonized Data (AHD) Working Groups will showcase the features and supports available to researchers who wish to conduct multi-jurisdictional studies. Also covered will be how the network is approaching data sharing and access challenges, the study design supports available, and approaches to troubleshoot common issues in multi-jurisdictional research and analyses. Researchers who are currently using and contributing to HDRN Canada resources will provide their perspectives and describe their approaches to multi-jurisdictional research. Throughout, best practices in data cataloguing and maximizing the utility of data assets across Canada will be described.
Friday, May 21, 2021
Honouring Indigenous Data Sovereignty within Mainstream Data Environments by Weaving Together Current Indigenous Data Governance Strategies
10:30am to 11:45am EST
- Robyn K. Rowe, Indigenous Data Sovereignty Lead, HDRN Canada
- Kristine Neglia, Manager, OCAP® & Information Governance, First Nations Information Governance Centre
- Melissa Dane, Research Officer, OCAP® & Information Governance, First Nations Information Governance Centre
- Jennifer D. Walker, Canada Research Chair in Indigenous Health, Laurentian University, Sudbury, Ontario, Canada
Summary: Global improvements to the ways that health data are collected, stored, and analyzed often fail to consider or engage with the rights and interests of Indigenous nations. Indigenous-led groups globally are advocating for improved, honest, ethical, and equitable data environments that address the collective interests of Indigenous nations. This presentation will provide an overview of international-level Indigenous data governance perspectives and will braid together current national-level First Nations’ data governance perspectives to stir discussions on the ways that mainstream health data holders and policy makers can honour Indigenous data governance and sovereignty throughout the data ecosystem.
Public perspectives on health data and research – Hearing from the ICES and HDRN Canada Public Advisory Councils
10:30am to 11:45am EST
- Jenine Paul, Manager of Public Engagement and Knowledge Translation, ICES
- Frank Gavin, Chair of Public Advisory Council, HDRN Canada
- Mpho Begin, HDRN Canada PAC
- Krysta Nesbitt, ICES and HDRN Canada PACs
- Gyan Chandra, ICES PAC
- Randy Davidson, ICES PAC
Summary: Public and patient perceptions on data are increasingly considered a key input into shaping approaches to health data use and access. The public’s opinions, values, and tolerance for how their health data is used are often context-specific, fluid and influenced by current issues in politics, technology and media. The health research community has become more attuned to public values, and the public has asked for more transparency on who uses their data and for what. This panel invites five public members to share their perspectives on the way health data has been, is currently and will be used in the future, and the role of public members in shaping these decisions.
Interjurisdictional comparison of approaches to private sector-funded research in Canada: key learnings and future directions
- Nicole Yada, ICES, HDRN Canada
- Juliana Wu, Canadian Institute for Health Information (CIHI), HDRN Canada
- P. Alison Paprica, ICES, HDRN Canada, University of Toronto
Summary: Consultations with the data centres that make up HDRN Canada took place in late 2020 to understand jurisdictional differences in policies and practices for working with the private sector. The process of working with private sector-funded requests was found to vary greatly, with reputational concerns about supporting requests from the private sector common. This work identified future opportunities for harmonizing approaches across jurisdictions to maximize the impact of data held by our data centres, and will focus on co-development of processes for working with the private sector together with members of the public.