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


ABSTRACT: 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.

SUBMITTER: Walters KM 

PROVIDER: S-EPMC8922173 | biostudies-literature | 2022 Mar

REPOSITORIES: biostudies-literature

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

Walters Kellie M KM   Jojic Anna A   Pfaff Emily R ER   Rape Marie M   Spencer Donald C DC   Shaheen Nicholas J NJ   Lamm Brent B   Carey Timothy S TS  

Journal of the American Medical Informatics Association : JAMIA 20220301 4


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 th  ...[more]

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