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Learnings from health system partners implementing community data governance

Diverse audience in a meeting room smiling

Although the implementation of community data governance is still in its early stages in Canada, emerging efforts are shedding light on practical steps to facilitate community ownership of data.

This report presents and analyzes five case studies on health organizations and institutions that are currently implementing community data governance. The experiences and lessons learned by these early adopters can serve as a practical roadmap for others, guiding effective action planning and strategic development.

Production of this report was made possible through collaboration and financial support from the Canadian Partnership Against Cancer Corporation and Health Canada. We would like to acknowledge the partner organizations for sharing their experiences for this initiative. These include ICES, Hamilton Health Sciences’ Equity, Diversity and Inclusion Department, and the Office of Anti-Racism, Equity and Social Accountability at Unity Health Toronto.

Learnings from health system partners implementing community data governanceDownload the report
Jemal Demeke

Jemal Demeke

Jemal Demeke is a researcher at Wellesley Institute. He has consistently uses his community organizing experience to inform his public health research approaches. His research spans infectious disease epidemiology, implementation science, and equitable health interventions. African, Caribbean and Black communities have a continued presence in his professional focus. He has founded equity initiatives in large organizations, led workshops for healthcare providers, and built relationships between community stakeholders and health agencies. His work at Wellesley Institute leverages these experiences to inform policy change for racialized communities across Canada.