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11:21
Methodology for Establishing a Community-Wide Life Laboratory for Capturing Unobtrusive and Continuous Remote Activity and Health Data
Published on: July 27, 2018
Building Canada's Health Information Ecosystem Through Equitable Approaches to Public, Patient, and Community
Roma Dhamanaskar1,2, James Shaw1,2
1Joint Centre for Bioethics, Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada.
Healthcare Management Forum
|May 22, 2026
Summary
Ensuring trustworthy health data requires inclusive governance. This study emphasizes health data justice and equity, advocating for diverse public engagement in health information policy to prioritize marginalized groups.
Area of Science:
- Health Informatics
- Public Health Policy
- Health Equity
Background:
- Canada's Pan-Canadian Health Data Charter aims to build a trustworthy health information ecosystem.
- Effective governance requires incorporating public perspectives, necessitating clear definitions of "the public" and practical inclusion strategies.
Purpose of the Study:
- To use health data justice as a framework for centring equity in public engagement for health information systems and policy.
- To outline key considerations for involving diverse public, patient, and community members in advising health data governance.
Main Methods:
- Theoretical application of health data justice principles.
- Outlining considerations for "fit-for-purpose" and "multi-modal" engagement strategies.
- Highlighting the role of long-term partnerships with civil society, policymakers, and researchers.
Main Results:
- Centring equity is crucial for inclusive public engagement in health data governance.
- Engagement strategies must be tailored to specific goals and accommodate diverse participant needs.
- Prioritizing structurally marginalized groups requires sustained collaboration.
Conclusions:
- Health data justice provides a robust theoretical basis for equitable inclusion in health information policy.
- Fit-for-purpose and multi-modal engagement are essential for meaningful public participation.
- Long-term partnerships are vital for ensuring policy reflects the needs of all communities, especially marginalized ones.
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