Challenges with organization, discoverability and access in Canadian open health data repositories

Open health data provides healthcare professionals, biomedical researchers and the general public with access to health data which has the potential to improve healthcare delivery and policy. The challenge is to create and implement appropriate metadata, or structured data about the data, to ensure that data are easy to discover, access and re-use. The goal of this study is to identify, evaluate and compare Canadian open health data repositories for their searching, browsing and navigation functionalities, the richness of their metadata description practices, and their metadata-based filtering mechanisms.

Metadata-based search and browsing was evaluated in addition to the number and nature of metadata elements. Six Canadian open health data repositories across national, provincial and institutional levels were evaluated. Data collected using verbatim text recording was evaluated using an analytical framework based on the 2019 Dataverse North Metadata Best Practices guide and 2019 Data Citation Implementation Project roadmap.

All repositories required filtering to access "open health data." All repositories included 'subject' facets for filtering, and 'title' and 'description' on the Results List. Use case evaluations suggest improvements including advanced search, health-specific search terms, records for all repositories, and links to related publications.

Consistent use of 'title' and 'description' suggests that an interoperable interface is possible. Inconsistencies in records indicate the need for explicit, easy to find mechanisms to access metadata in repositories. The analytical framework represents first draft guidelines for metadata creation and implementation to improve organization, discoverability, and access to Canadian open health data.