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, Thomas R Campion, Jr, PhD Corresponding author: Thomas R. Campion, Jr, PhD, Information Technologies & Services Department, 575 Lexington Avenue, Tenth Floor, New York, NY 10022, United States (thc2015@med.cornell.edu) Search for other works by this author on: Oxford Academic Catherine K Craven, PhD, MA, MLS, FAMIA Division of Clinical Research Informatics, Department of Population Health Sciences, The University of Texas Health San Antonio , San Antonio, TX 78229, United States Search for other works by this author on: Oxford Academic David A Dorr, MD, MS Department of Medical Informatics and Clinical Epidemiology, Oregon Health & Science University , Portland, OR 97239, United States Department of Medicine, Oregon Health & Science University , Portland, OR 97239, United States Search for other works by this author on: Oxford Academic Elmer V Bernstam, MD, MSE, MS D. Bradley McWilliams School of Biomedical Informatics, The University of Texas Health Science Center , Houston, TX 77030, United States Division of General Internal Medicine, McGovern Medical School and Center for Clinical and Translational Sciences, The University of Texas Health Science Center , Houston, TX 77030, United States Search for other works by this author on: Oxford Academic Boyd M Knosp, MS, FAMIA Roy J. and Lucille A. Carver College of Medicine and the Institute for Clinical & Translational Science, University of Iowa , Iowa City, IA 52242, United States Search for other works by this author on: Oxford Academic
https://orcid.org/0000-0001-7624-769X Journal of the American Medical Informatics Association, ocae111, https://doi.org/10.1093/jamia/ocae111
Published:
23 May 2024
Article history
Received:
16 February 2024
Revision received:
10 April 2024
Editorial decision:
02 May 2024
Accepted:
05 May 2024
Published:
23 May 2024
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Thomas R Campion, Catherine K Craven, David A Dorr, Elmer V Bernstam, Boyd M Knosp, Understanding enterprise data warehouses to support clinical and translational research: impact, sustainability, demand management, and accessibility, Journal of the American Medical Informatics Association, 2024;, ocae111, https://doi.org/10.1093/jamia/ocae111
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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.
data warehouse, secondary use, CTSA, EHR
© The Author(s) 2024. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissions@oup.com
This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/pages/standard-publication-reuse-rights)
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