了解支持临床和转化研究的企业数据仓库:影响、可持续性、需求管理和可访问性。

IF 4.7 2区 医学 Q1 COMPUTER SCIENCE, INFORMATION SYSTEMS
Thomas R Campion, Catherine K Craven, David A Dorr, Elmer V Bernstam, Boyd M Knosp
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引用次数: 0

摘要

目标:医疗机构(包括由美国国立卫生研究院资助的临床与转化科学奖(CTSA)中心)寻求通过企业研究数据仓库(EDW4R)实现电子健康记录(EHR)数据的二次使用,但最佳方法尚不清楚。在这项定性研究中,我们的目标是了解 EDW4R 的影响、可持续性、需求管理和可访问性:我们对来自中科大中心的信息学领导者(n = 21)进行了半结构化访谈,并对访谈记录进行了定向内容分析:EDW4R为单中心和多中心研究创造了机构能力,为来自多个学科的研究人员提供了访问电子病历数据的民主化途径,并使学习型医疗系统成为可能。由于研究者不遵守规定,文献计量学一直面临挑战,但有一个中心要求将所有研究方案与资助记录联系起来,从而能够量化 EDW4R 数百万美元的影响。EDW4R 的可持续发展依赖于多种资金来源,总体上已从 CTSA 赠款转向机构和行业支持。为了满足 EDW4R 的需求,各机构扩大了人员编制,采用了不同的管理方法,并提供了研究人员自助服务工具。以用户为中心的设计、科学家数据素养的提高、信息员队伍的扩大以及团队科学的发展,都会使 EDW4R 的可访问性受益:讨论:随着研究人员对 EDW4R 需求的增加,追踪影响、确保可持续性和提高 EDW4R 资源可访问性的方法也各不相同:本研究加深了人们对信息学领导者如何在整个CTSA联盟以及其他可能的地方为使用EDW4R的研究人员提供支持的理解。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Understanding enterprise data warehouses to support clinical and translational research: impact, sustainability, demand management, and accessibility.

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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来源期刊
Journal of the American Medical Informatics Association
Journal of the American Medical Informatics Association 医学-计算机:跨学科应用
CiteScore
14.50
自引率
7.80%
发文量
230
审稿时长
3-8 weeks
期刊介绍: JAMIA is AMIA''s premier peer-reviewed journal for biomedical and health informatics. Covering the full spectrum of activities in the field, JAMIA includes informatics articles in the areas of clinical care, clinical research, translational science, implementation science, imaging, education, consumer health, public health, and policy. JAMIA''s articles describe innovative informatics research and systems that help to advance biomedical science and to promote health. Case reports, perspectives and reviews also help readers stay connected with the most important informatics developments in implementation, policy and education.
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