A Landscape Analysis of Health Data in Canada

The World Data System (WDS), an international organization dedicated to promoting long-term stewardship and advocating for access to quality scientific data, recognizes the critical importance of data sharing for health research. The COVID-19 pandemic underscored this need, catalyzing an unprecedented demand for rapid health data sharing. The ability to quickly analyze data from diverse sources, such as electronic health records (EHRs), genomic data, population health surveillance data, and research-generated data, proved crucial for understanding the virus, developing treatments, and informing public health interventions. This experience highlighted the importance of having health data that is findable, accessible, interoperable, and reusable (FAIR) to effectively address global health challenges.

A robust and interconnected digital health ecosystem is essential to support these efforts. This report, prepared to inform the WDS's understanding of the Canadian context, will map the roles and relationships of key contributing organizations, both nationally and provincially, within the Canadian health data landscape. It will highlight identifiable essential data repository attributes where applicable and provide recommendations for future development and collaboration. While
data repositories play a significant role, this analysis expands to include organizations and systems that facilitate data access, research, and policy development.

Ultimately, this report will provide a comprehensive overview of the Canadian digital health data landscape, facilitating a deeper understanding of its complexities and identifying opportunities for advancement within the context of the WDS's global mission.