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J Clin Transl Sci. 2018 Oct;2(5):267-275. doi: 10.1017/cts.2018.332. Epub 2018 Dec 5.

Sustainability considerations for clinical and translational research informatics infrastructure.

Author information

1
Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC, USA.
2
Department of Biomedical Informatics and Medical Education, University of Washington, Seattle, WA, USA.
3
Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN, USA.
4
Regenstrief Institute, Inc., Indiana University School of Medicine, Indianapolis, IN, USA.
5
Department of Public Health Sciences, University of California at Davis, Davis, CA, USA.
6
Department of Health Outcomes and Biomedical Informatics, University of Florida, Gainesville, FL, USA.
7
Department of Medicine, University of California Los Angeles, Los Angeles, CA, USA.
8
Research Data Alliance-US, Rensselaer Polytechnic Institute, Troy, NY, USA.
9
Institute for Clinical and Translational Science, University of Iowa, Iowa City, IA, USA.
10
Department of Biostatistics & Medical Informatics, University of Wisconsin, Madison, WI, USA.
11
Informatics Institute, University of Alabama at Birmingham, Birmingham, AL, USA.
12
Department of Preventive Medicine, Division of Health and Biomedical Informatics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA.

Abstract

A robust biomedical informatics infrastructure is essential for academic health centers engaged in translational research. There are no templates for what such an infrastructure encompasses or how it is funded. An informatics workgroup within the Clinical and Translational Science Awards network conducted an analysis to identify the scope, governance, and funding of this infrastructure. After we identified the essential components of an informatics infrastructure, we surveyed informatics leaders at network institutions about the governance and sustainability of the different components. Results from 42 survey respondents showed significant variations in governance and sustainability; however, some trends also emerged. Core informatics components such as electronic data capture systems, electronic health records data repositories, and related tools had mixed models of funding including, fee-for-service, extramural grants, and institutional support. Several key components such as regulatory systems (e.g., electronic Institutional Review Board [IRB] systems, grants, and contracts), security systems, data warehouses, and clinical trials management systems were overwhelmingly supported as institutional infrastructure. The findings highlighted in this report are worth noting for academic health centers and funding agencies involved in planning current and future informatics infrastructure, which provides the foundation for a robust, data-driven clinical and translational research program.

KEYWORDS:

CTSA; Translational research; biomedical informatics; infrastructure; sustainability

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