CMAJ Open · 2021 · 18 citations · 24 references
ComputingData ScienceData ManagementHealth Information ExchangeHealth Services ResearchData ArchivingData CurationData ExchangeData InteroperabilityData OwnershipResearch Data ManagementBest Practices ManagementData Access For ResearchersData ReuseData UseResearch Data Management PlansResearch Data Ownership
BACKGROUND: As Canada increases requirements for research data management and sharing, there is value in identifying how research data are shared and what has been done to make them findable and reusable. This study aimed to understand Canada's data-sharing landscape by reviewing how data funded by the Canadian Institutes of Health Research (CIHR) are shared and comparing researchers' data-sharing practices to best practices for research data management and sharing. METHODS: We performed a descriptive analysis of CIHR-funded publications from PubMed and PubMed Central published between 1946 and Dec. 31, 2019, that indicated that the research data underlying the results of the publication were shared. We analyzed each publication to identify how and where data were shared, who shared data and what documentation was included to support data reuse. RESULTS: Of 4144 CIHR-funded publications identified, 1876 (45.2%) included accessible data, 935 (22.6%) stated that data were available via request or application, and 300 (7.2%) stated that data sharing was not applicable or possible; we found no evidence of data sharing in 1558 publications (37.6%). Frequent data-sharing methods included via a repository (1549 [37.4%]), within supplementary files (1048 [25.3%]) and via request or application (935 [22.6%]). Overall, 554 publications (13.4%) included documentation that would facilitate data reuse. INTERPRETATION: Publications funded by the CIHR largely lack the metadata, access instructions and documentation to facilitate data discovery and reuse. Without measures to address these concerns and enhanced support for researchers seeking to implement best practices for research data management and sharing, much CIHR-funded research data will remain hidden, inaccessible and unusable.
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