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Sustainability considerations for clinical and translational research informatics infrastructure

  • Jihad S. Obeid (a1), Peter Tarczy-Hornoch (a2), Paul A. Harris (a3), William K. Barnett (a4), Nicholas R. Anderson (a5), Peter J. Embi (a4), William R. Hogan (a6), Douglas S. Bell (a7), Leslie D. McIntosh (a8), Boyd Knosp (a9), Umberto Tachinardi (a10), James J. Cimino (a11) and Firas H. Wehbe (a12)...

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.

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Copyright

This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-ShareAlike licence (http://creativecommons.org/licenses/by-nc-sa/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the same Creative Commons licence is included and the original work is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use.

Corresponding author

*Address for correspondence: J. S. Obeid, MD, 135 Cannon St., Suite 405, MSC200, Charleston, SC 29425, Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC, USA. Email: jobeid@musc.edu

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