A roadmap for responsible restricted data sharing in Canada: A panel presentation at the Canadian Conference on Open Science and Open Scholarship 2025

A roadmap for responsible restricted data sharing Kevin Read, MLIS, MAS Research Data Management & Open Science Librarian [email protected] Outline •Restricted data sharing landscape •The unFAIRness of restricted data •A path forward for open science and restricted data • What’s next? Restricted data sharing landscape Institutional data services support Identified a knowledge gap in how institutions support researchers with restricted data. Khair, S., Dara, R., Haigh, S., Leggott, M., Milligan, I., Moon, J., Payne, K., Portales-Casamar, E., Roquet, G., & Wilson, L. (2020). The Current State of Research Data Management in Canada. Zenodo. https://doi.org/10.5281/zenodo.6564659 Unclear how institutions facilitate the discovery of and access to restricted data. Institutional RDM strategy review Only 7% mention restricted access models https://doi.org/10.1139/facets-2024-0332 Tri-agency data deposit “What we heard” Report “Participants [institutions] shared concerns about the lack of capacity, resources and infrastructure to support the data deposit requirement.” “Concerns about the lack of Canadian national and institutional infrastructure for depositing sensitive data and controlling access to it.” “Challenges of ensuring the permanence of, and access to, primary data stored elsewhere.” “When data cannot be deposited in a recognized repository, researchers should provide an explanation and an alternative plan for data retention and data preservation” https://science.gc.ca/site/science/en/interagency-research-funding/policies-and-guidelines/research-data-management/what-we-heard-report-engagement-data-deposit-requirement-tri-agency-research-data-management-policy The unFAIRness of restricted data Restricted data is hard to find This Photo by Unknown Author is licensed under CC BY-NC-ND Researchers… •Find it extremely challenging to locate restricted data through data source websites •Struggle to discern whether restricted data can be used for research purposes •Are uncertain about whether they are eligible to access restricted data •Find the request process difficult to navigate •Find the time required to acquire restricted data prohibitive and an impediment to research A. Data availability statements D. Metadata standards growth opportunity Data description alignment Access description alignment Read, K. B., Gibson, G., Leahey, A., Peterson, L., Rutley, S., Shi, J., ... & Stathis, K. (2024). Identifying metadata commonalities across restricted health data sources: A mixed methods study exploring how to improve the discovery of and access to restricted datasets. Journal of eScience Librarianship, 13(2). https://doi.org/10.7191/jeslib.907 A path forward Standardize data sharing workflows Project design Data use Data access Consent / Approval Create standard operating procedures pre-project for restricted data sharing Data discovery Policy compliance Standardize data sharing workflows Project design Data use Data access Consent / Approval REB, research office, IT, library, legal team Data discovery Policy compliance Create standard operating procedures pre-project for restricted data sharing Standardize data access workflows Institutional repository / catalogue Data access review Data use agreement / Ethics approval Data access in secure storage environment Develop standard access pipeline for prospective researchers Make them compatible across institutions Institutional repository / catalogue Data access review Data use agreement / Ethics approval Data access in secure storage environment Project design Data use Data access Ethics / Legal Data discovery Policy compliance Utilize existing models https://www.youtube.com/watch?v=93MASInGXQk&pp=ygUcYWNjZXNzaW5nIG RhdGEgdGhyb3VnaCBkYXNoIQ%3D%3D https://www.archimedesdata.ca/wp-content/uploads/2025/09/ARCHIMEDES-Ethics-and-Data-GovernanceFramework-3.pdf https://doi.org/10.1007/s12021-021-09516-9 Repository infrastructure accepts restricted data Infrastructure supports discovery & access Dataset title Dataset description Unique ID •DOI/handle Cost •Cost recovery $1000 for data preparation and analysis support Eligibility requirements •Funding required •Must have faculty designation Access procedures •Formal application •Community board approval •Ethics board approval •Data use agreement Secure storage Controlled access review Open metadata Establish policy for restricted data sharing Funder policy •Require open metadata for discovery and access (tied to secure infrastructure) •Ensure clear access instructions are provided Publisher policy • Remove templated “available upon request” statement suggestions •Incorporate metadata structure into data availability reporting guidelines •Ensure data access instructions are provided References Bekemeier B, Park S, Backonja U, Ornelas I, Turner AM. 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