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临床与转化研究信息学基础设施的可持续性考量

Sustainability considerations for clinical and translational research informatics infrastructure.

作者信息

Obeid Jihad S, Tarczy-Hornoch Peter, Harris Paul A, Barnett William K, Anderson Nicholas R, Embi Peter J, Hogan William R, Bell Douglas S, McIntosh Leslie D, Knosp Boyd, Tachinardi Umberto, Cimino James J, Wehbe Firas H

机构信息

Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC, USA.

Department of Biomedical Informatics and Medical Education, University of Washington, Seattle, WA, USA.

出版信息

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

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.

摘要

强大的生物医学信息学基础设施对于从事转化研究的学术健康中心至关重要。对于这样一个基础设施包含哪些内容以及如何获得资金,并没有模板可循。临床与转化科学奖网络内的一个信息学工作组进行了一项分析,以确定该基础设施的范围、治理和资金情况。在确定了信息学基础设施的基本组成部分后,我们对网络机构的信息学负责人就不同组成部分的治理和可持续性进行了调查。42名调查受访者的结果显示,治理和可持续性存在显著差异;然而,也出现了一些趋势。电子数据捕获系统、电子健康记录数据存储库及相关工具等核心信息学组成部分有多种资金模式,包括服务收费、校外资助和机构支持。监管系统(如电子机构审查委员会[IRB]系统、资助和合同)、安全系统、数据仓库和临床试验管理系统等几个关键组成部分作为机构基础设施得到了压倒性的支持。本报告中强调的研究结果对于参与规划当前和未来信息学基础设施的学术健康中心和资助机构而言值得关注,该基础设施为强大的、数据驱动的临床和转化研究项目奠定了基础。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/091e/6799598/3f11ed27c8ae/S2059866118003321_fig1.jpg

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