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. 2024 Jan 11:2023:397-406.
eCollection 2023.

How Are Leading Research Institutions Engaging with Data Sharing Tools and Programs?

Eric S Hall  1 , Genevieve B Melton  2 , Philip R O Payne  3 , David A Dorr  4 , David K Vawdrey  1
Affiliations

How Are Leading Research Institutions Engaging with Data Sharing Tools and Programs?

Eric S Hall et al. AMIA Annu Symp Proc. .

Abstract

With widespread electronic health record (EHR) adoption and improvements in health information interoperability in the United States, troves of data are available for knowledge discovery. Several data sharing programs and tools have been developed to support research activities, including efforts funded by the National Institutes of Health (NIH), EHR vendors, and other public- and private-sector entities. We surveyed 65 leading research institutions (77% response rate) about their use of and value derived from ten programs/tools, including NIH's Accrual to Clinical Trials, Epic Corporation's Cosmos, and the Observational Health Data Sciences and Informatics consortium. Most institutions participated in multiple programs/tools but reported relatively low usage (even when they participated, they frequently indicated that fewer than one individual/month benefitted from the platform to support research activities). Our findings suggest that investments in research data sharing have not yet achieved desired results.

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Figures

Figure 1.
Figure 1.
Usage rates among 10 data-sharing programs and tools
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