Data Sharing Policies across Health Research Globally: Cross-Sectional Meta-Research Study

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Bibliographic Details
Title: Data Sharing Policies across Health Research Globally: Cross-Sectional Meta-Research Study
Language: English
Authors: Aidan C. Tan (ORCID 0000-0003-0354-4006), Angela C. Webster (ORCID 0000-0001-7509-0512), Sol Libesman (ORCID 0000-0001-7513-2663), Zijing Yang (ORCID 0000-0001-7041-459X), Rani R. Chand (ORCID 0000-0002-0175-3675), Weber Liu (ORCID 0000-0002-2156-3473), Talia Palacios (ORCID 0000-0002-1040-0724), Kylie E. Hunter (ORCID 0000-0002-2796-9220), Anna Lene Seidler (ORCID 0000-0002-0027-1623)
Source: Research Synthesis Methods. 2024 15(6):1060-1071.
Availability: Wiley. Available from: John Wiley & Sons, Inc. 111 River Street, Hoboken, NJ 07030. Tel: 800-835-6770; e-mail: cs-journals@wiley.com; Web site: https://www.wiley.com/en-us
Peer Reviewed: Y
Page Count: 12
Publication Date: 2024
Document Type: Journal Articles
Reports - Research
Descriptors: Information Dissemination, Data, Health, Medical Research, Policy, COVID-19, Pandemics, Guidance, Program Implementation, Ethics, Research Committees
DOI: 10.1002/jrsm.1757
ISSN: 1759-2879
1759-2887
Abstract: Background: Data sharing improves the value, synthesis, and integrity of research, but rates are low. Data sharing might be improved if data sharing policies were prominent and actionable at every stage of research. We aimed to systematically describe the epidemiology of data sharing policies across the health research lifecycle. Methods: This was a cross-sectional analysis of the data sharing policies of the largest health research funders, all national ethics committees, all clinical trial registries, the highest-impact medical journals, and all medical research data repositories. Stakeholders' official websites, online reports, and other records were reviewed up to May 2022. The strength and characteristics of their data sharing policies were assessed, including their policies on data sharing intention statements (a.k.a. data accessibility statements) and on data sharing specifically for coronavirus disease studies. Data were manually extracted in duplicate, and policies were descriptively analysed by their stakeholder and characteristics. Results: Nine hundred and thirty-five eligible stakeholders were identified: 110 funders, 124 ethics committees, 18 trial registries, 273 journals, and 410 data repositories. Data sharing was required by 41% (45/110) of funders, no ethics committees or trial registries, 19% (52/273) of journals and 6% (24/410) of data repositories. Among funder types, a higher proportion of private (63%, 35/55) and philanthropic (67%, 4/6) funders required data sharing than public funders (12%, 6/49). Conclusion: Data sharing requirements, and even recommendations, were insufficient across health research. Where data sharing was required or recommended, there was limited guidance on implementation. We describe multiple pathways to improve the implementation of data sharing. Public funders and ethics committees are two stakeholders with particularly important untapped opportunities.
Abstractor: As Provided
Entry Date: 2024
Accession Number: EJ1447273
Database: ERIC
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