FAIR sharing of health data: a systematic review of applicable solutions

Author:

Guillot PaulORCID,Bøgsted MartinORCID,Vesteghem CharlesORCID

Abstract

Abstract Purpose Data sharing is essential in health science research. This has also been acknowledged by governments and institutions who have set-up a number of regulations, laws, and initiatives to facilitate it. A large number of initiatives has been trying to address data sharing issues. With the development of the FAIR principles, a set of detailed criteria for evaluating the relevance of such solutions is now available. This article intends to help researchers to choose a suitable solution for sharing their health data in a FAIR way. Methods We conducted a systematic literature review of data sharing platforms adapted to health science research. We selected these platforms through a query on Scopus, PubMed, and Web of Science and filtered them based on specific exclusion criteria. We assessed their relevance by evaluating their: implementation of the FAIR principles, ease of use by researchers, ease of implementation by institutions, and suitability for handling Individual Participant Data (IPD). Results We categorized the 35 identified solutions as being either online or on-premises software platforms. Interoperability was the main obstacle for the solutions regarding the fulfilment of the FAIR principles. Additionally, we identified which solutions address sharing of IPD and anonymization issues. Vivli and Dataverse were identified as the two most all-round solutions for sharing health science data in a FAIR way. Conclusions Although no solution is perfectly adapted to share all type of health data, there are work-arounds and interesting solutions to make health research data FAIR.

Publisher

Springer Science and Business Media LLC

Subject

Biomedical Engineering,Applied Microbiology and Biotechnology,Bioengineering,Biotechnology

Reference99 articles.

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2. Regulation (EU) 2022/868 of the European Parliament and of the Council of 30 May 2022 on European data governance and amending Regulation (EU) 2018/1724 (Data Governance Act) (Text with EEA relevance). 2022. http://data.europa.eu/eli/reg/2022/868/oj/eng. Accessed 15 Oct 2023.

3. Proposal for a REGULATION OF THE EUROPEAN PARLIAMENT AND OF THE COUNCIL on harmonised rules on fair access to and use of data (Data Act). 2022. https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=COM%3A2022%3A68%3AFIN. Accessed 15 Oct 2023.

4. NIH GREI - NIH Office of Data Science Strategy Announces New Initiative to Improve Access to NIH-funded Data. https://datascience.nih.gov/news/nih-office-of-data-science-strategy-announces-new-initiative-to-improve-data-access. Accessed 7 Oct 2022.

5. Horizon 2020 - Details of the EU funding programme which ended in 2020 and links to further information. https://research-and-innovation.ec.europa.eu/funding/funding-opportunities/funding-programmes-and-open-calls/horizon-2020_en. Accessed 13 Oct 2022.

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