FAIR data sharing: An international perspective on why medical researchers are lagging behind

Author:

Rainey Linda1,Lutomski Jennifer E2ORCID,Broeders Mireille JM13ORCID

Affiliation:

1. Radboud Institute for Health Sciences, Radboud University Medical Center, Nijmegen, The Netherlands

2. Radboud Biobank, Radboud University Medical Center, Nijmegen, The Netherlands

3. Dutch Expert Centre for Screening, Nijmegen, The Netherlands

Abstract

FAIR data, that is, Findable, Accessible, Interoperable, and Reusable data, and Big Data intersect across issues related to data storage, access, and processing. The solution-oriented FAIR principles serve an integral role in improving Big Data; yet to date, the implementation of FAIR in multiple sectors has been fragmented. We conducted an exploratory analysis to identify incentives and barriers in creating FAIR data in the medical sector using digital concept mapping, a systematic mixed methods approach. Thirty-eight principal investigators (PIs) were recruited from North America, Europe, and Oceania. Our analysis revealed five clusters rated according to perceived relevance: ‘Efficiency and collaboration’ (rating 7.23), ‘Privacy and security’ (rating 7.18), ‘Data management standards’ (rating 7.16), ‘Organization of services’ (rating 6.98), and ‘Ownership’ (rating 6.28). All five clusters scored relatively high and within a narrow range (i.e., 6.28–7.69), implying that each cluster likely influences researchers’ decision-making processes. PIs harbor a positive view of FAIR data sharing, as exemplified by participants highly prioritizing ‘Efficiency and collaboration’. However, the other four clusters received only modestly lower ratings and largely contained barriers to FAIR data sharing. When viewed collectively, the benefits of efficiency and collaboration may not be sufficient in propelling FAIR data sharing. Arguably, until more of these reported barriers are addressed, widespread support of FAIR data will not translate into widespread practice. This research lays the preliminary foundation for conducting targeted large-scale research into FAIR data practices in the medical research community.

Funder

KWF Kankerbestrijding

Publisher

SAGE Publications

Subject

Library and Information Sciences,Information Systems and Management,Computer Science Applications,Communication,Information Systems

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