2025-06-06 –, Great Hall
Language: English
Introduction: The Canadian digital health landscape is a complex ecosystem with extensive data crucial for research and innovation. This analysis provides an overview of key national and provincial organizations in health data stewardship, mapping their roles, interconnections, and essential data repository attributes to highlight current health data management practices in Canada.
Method: Identified through prior knowledge, re3data.org, and Google searches, a selection of Canadian health data entities was examined for description, users, partners, data accessibility, and re3data presence. Data repositories were further analyzed against key attributes drawn from the Research Data Alliance's "Common Descriptive Attributes of Research Data Repositories" report.
Discussion: This analysis demonstrates that the diverse Canadian health data ecosystem exhibits varying maturity levels in data management and access. Significant variations were observed in accessibility, data catalogues, metadata standards, use of a persistent identifier (PID) system, and re3data entries, indicating inconsistencies in discoverability and transparency.
Recommendations: To maximize the impact and FAIR (Findable, Accessible, Interoperable, Reusable) use of Canadian health data, this report recommends enhancing data management practices, including improved metadata standards, increased PID system adoption, and widespread data repository certification. The World Data System can support this through knowledge sharing and advocating for international standards.
Conclusion: The Canadian digital health data landscape shows strengths in research and collaboration, but needs to improve in other areas such as standardization and metadata. Addressing these issues with World Data System support is crucial for a more robust and interoperable infrastructure for effective health research, benefiting all Canadians.
Alyssa Foote is a health data and informatics professional with expertise in leveraging data for improved health outcomes. With a Master of Data Science from UBC and a Bachelor of Science in Health Information Science and Computer Science from UVic, she has experience working with Canadian and English health data. As a Health Data Research Associate at the World Data System, she contributes to improving health data accessibility and interoperability. Alyssa is passionate about facilitating the sustainability and equitability of healthcare research.