Report: Understanding and evaluating data discovery and access for restricted data in Canada: A metadata assessment of health data sources

This project identified Canadian restricted and access-limited data sources (n=137) and evaluated a sub-sample (n=48) of restricted health data sources to measure how discoverable and accessible the datasets are to potential researchers. To identify common elements used by the data sources, we inventoried and mapped elements to existing metadata standards for discovery and access. Overall, for many data sources, there was incomplete information and only basic metadata provided about datasets. Across the sub-sample, none of the data sources had implemented any metadata standards for sharing information about restricted data, which poses significant barriers for the discovery and reuse of restricted health data in Canada.

Based on these findings, stakeholders across the research data ecosystem should consider establishing key recommendations and set priorities for collaborators to improve restricted data discovery and access systems and policies in Canada. These key recommendations are included within this report, alongside a description of the project.