Supporting research, protecting data: one institution's approach to clinical data warehouse governance.

Autor:	Walters KM; North Carolina Translational and Clinical Sciences Institute, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA., Jojic A; North Carolina Translational and Clinical Sciences Institute, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA., Pfaff ER; Department of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA., Rape M; North Carolina Translational and Clinical Sciences Institute, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA., Spencer DC; Information Services Division, UNC Health, Morrisville, North Carolina, USA., Shaheen NJ; Division of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA., Lamm B; Information Services Division, UNC Health, Morrisville, North Carolina, USA., Carey TS; Division of General Medicine and Clinical Epidemiology, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina, USA.
Jazyk:	angličtina
Zdroj:	Journal of the American Medical Informatics Association : JAMIA [J Am Med Inform Assoc] 2022 Mar 15; Vol. 29 (4), pp. 707-712.
DOI:	10.1093/jamia/ocab259
Abstrakt:	Institutions must decide how to manage the use of clinical data to support research while ensuring appropriate protections are in place. Questions about data use and sharing often go beyond what the Health Insurance Portability and Accountability Act of 1996 (HIPAA) considers. In this article, we describe our institution's governance model and approach. Common questions we consider include (1) Is a request limited to the minimum data necessary to carry the research forward? (2) What plans are there for sharing data externally?, and (3) What impact will the proposed use of data have on patients and the institution? In 2020, 302 of the 319 requests reviewed were approved. The majority of requests were approved in less than 2 weeks, with few or no stipulations. For the remaining requests, the governance committee works with researchers to find solutions to meet their needs while also addressing our collective goal of protecting patients. (© The Author(s) 2021. Published by Oxford University Press on behalf of the American Medical Informatics Association.)
Databáze:	MEDLINE
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