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Leadership, Informatics Expertise, and Resources: Determinants of Institutional Data Sharing in the National Clinical
Carly M Rose1, William S Bush1, Mark F Beno1
1Program in Biomedical & Health Informatics; Cleveland Institute for Computational Biology; Department of Population and Quantitative Health Sciences; Department of Genetics and Genome Sciences Case Western Reserve University, Cleveland, OH.
None:
The National Clinical Cohort Collaborative (N3C), initially developed in response to the SARS-CoV-2/COVID-19 pandemic, is one of the largest centralized, individual-level clinical data repositories available for research in the US. Some institutions do not share data with N3C. We accessed public data to derive institutional variables representative of leadership, informatics expertise, and resources, potentially addressable factors we hypothesized were associated with N3C clinical data sharing. N3C data sharing institutions were more likely to have active NCATS funding, have affiliated departments, centers, or institutes of biomedical informatics, and active Fellows of the American College of Medical Informatics faculty compared with institutions that did not share data with N3C. While we identified institutional characteristics associated with N3C data sharing, there are likely other characteristics associated with institutional data sharing decisions. Understanding factors that motivate or deter institutional data sharing for research is key to addressing barriers and making more data open.
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