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Understanding enterprise data warehouses to support clinical and translational research: impact, sustainability, demand management, and accessibility.
Campion, Thomas R; Craven, Catherine K; Dorr, David A; Bernstam, Elmer V; Knosp, Boyd M.
Afiliación
  • Campion TR; Clinical & Translational Science Center, Weill Cornell Medicine, New York, NY 10022, United States.
  • Craven CK; Division of Clinical Research Informatics, Department of Population Health Sciences, The University of Texas Health San Antonio, San Antonio, TX 78229, United States.
  • Dorr DA; Department of Medical Informatics and Clinical Epidemiology, Oregon Health & Science University, Portland, OR 97239, United States.
  • Bernstam EV; Department of Medicine, Oregon Health & Science University, Portland, OR 97239, United States.
  • Knosp BM; D. Bradley McWilliams School of Biomedical Informatics, The University of Texas Health Science Center, Houston, TX 77030, United States.
J Am Med Inform Assoc ; 31(7): 1522-1528, 2024 Jun 20.
Article en En | MEDLINE | ID: mdl-38777803
ABSTRACT

OBJECTIVES:

Healthcare organizations, including Clinical and Translational Science Awards (CTSA) hubs funded by the National Institutes of Health, seek to enable secondary use of electronic health record (EHR) data through an enterprise data warehouse for research (EDW4R), but optimal approaches are unknown. In this qualitative study, our goal was to understand EDW4R impact, sustainability, demand management, and accessibility. MATERIALS AND

METHODS:

We engaged a convenience sample of informatics leaders from CTSA hubs (n = 21) for semi-structured interviews and completed a directed content analysis of interview transcripts.

RESULTS:

EDW4R have created institutional capacity for single- and multi-center studies, democratized access to EHR data for investigators from multiple disciplines, and enabled the learning health system. Bibliometrics have been challenging due to investigator non-compliance, but one hub's requirement to link all study protocols with funding records enabled quantifying an EDW4R's multi-million dollar impact. Sustainability of EDW4R has relied on multiple funding sources with a general shift away from the CTSA grant toward institutional and industry support. To address EDW4R demand, institutions have expanded staff, used different governance approaches, and provided investigator self-service tools. EDW4R accessibility can benefit from improved tools incorporating user-centered design, increased data literacy among scientists, expansion of informaticians in the workforce, and growth of team science.

DISCUSSION:

As investigator demand for EDW4R has increased, approaches to tracking impact, ensuring sustainability, and improving accessibility of EDW4R resources have varied.

CONCLUSION:

This study adds to understanding of how informatics leaders seek to support investigators using EDW4R across the CTSA consortium and potentially elsewhere.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Registros Electrónicos de Salud / Investigación Biomédica Traslacional Límite: Humans País/Región como asunto: America do norte Idioma: En Revista: J Am Med Inform Assoc Asunto de la revista: INFORMATICA MEDICA Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Reino Unido
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Registros Electrónicos de Salud / Investigación Biomédica Traslacional Límite: Humans País/Región como asunto: America do norte Idioma: En Revista: J Am Med Inform Assoc Asunto de la revista: INFORMATICA MEDICA Año: 2024 Tipo del documento: Article País de afiliación: Estados Unidos Pais de publicación: Reino Unido