领先的研究机构如何使用数据共享工具和程序?
Eric S Hall1, Genevieve B Melton2, Philip R O Payne3
1Geisinger, Danville, PA.
AMIA ... Annual Symposium proceedings. AMIA Symposium
|January 15, 2024
概括
尽管对电子健康记录 (EHR) 数据共享计划进行了大量投资,但研究机构报告使用率低,价值有限. 这些发现表明,目前的数据共享举措可能没有达到其预期的研究支持目标.
科学领域:
- 医疗信息学 医疗信息学
- 生物医学研究数据管理数据管理
背景情况:
- 在美国,电子健康记录 (EHR) 的广泛采用和改善的健康信息互操作性已经为研究创造了庞大的数据集.
- 许多数据共享计划和工具,由国家卫生研究院 (NIH),EHR供应商和公共/私人组织等实体资助,旨在促进研究.
研究的目的:
- 评估美国领先研究机构中十个主要数据共享计划/工具的利用和感知价值.
- 了解健康数据共享方面的投资在多大程度上转化为有形的研究收益.
主要方法:
- 一项调查分发给65个领先的研究机构,达到77%的响应率.
- 参与者报告了他们与十个特定的数据共享程序/工具的参与以及从中获得的价值.
- 收集的数据包括参与水平和受益于研究活动平台的个人数量.
主要成果:
- 大多数受访机构都积极参与多个数据共享计划/工具.
- 然而,报告的使用量在各个平台上一直很低,每月从大多数参与平台中受益的人不到一人.
- 机构报告说,这些数据共享举措带来的价值相对较低.
结论:
- 目前对研究数据共享基础设施和计划的投资尚未产生所需的利用水平或研究影响.
- 进一步评估和数据共享策略的潜在重组可能是必要的,以最大限度地提高EHR数据对科学发现的价值.
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