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

被引:1
|
作者
Rainey, Linda [1 ]
Lutomski, Jennifer E. [2 ,4 ]
Broeders, Mireille J. M. [1 ,3 ]
机构
[1] Radboud Univ Nijmegen, Radboud Inst Hlth Sci, Med Ctr, Nijmegen, Netherlands
[2] Radboud Univ Nijmegen, Radboud Biobank, Med Ctr, Nijmegen, Netherlands
[3] Dutch Expert Ctr Screening, Nijmegen, Netherlands
[4] Radboud Univ Nijmegen, Radboud Biobank, Med Ctr, Geert Grooteplein Zuid 10,Route 830, NL-6500 HB Nijmegen, Netherlands
关键词
Data sharing; FAIR principles; mixed-methods research; motivation; barriers; data stewardship;
D O I
10.1177/20539517231171052
中图分类号
C [社会科学总论];
学科分类号
03 ; 0303 ;
摘要
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.
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页数:9
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