Eric S Hall, Genevieve B Melton, Philip R O Payne, David A Dorr, David K Vawdrey
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引用次数: 0
Abstract
With widespread electronic health record (EHR) adoption and improvements in health information interoperability in the United States, troves of data are available for knowledge discovery. Several data sharing programs and tools have been developed to support research activities, including efforts funded by the National Institutes of Health (NIH), EHR vendors, and other public- and private-sector entities. We surveyed 65 leading research institutions (77% response rate) about their use of and value derived from ten programs/tools, including NIH's Accrual to Clinical Trials, Epic Corporation's Cosmos, and the Observational Health Data Sciences and Informatics consortium. Most institutions participated in multiple programs/tools but reported relatively low usage (even when they participated, they frequently indicated that fewer than one individual/month benefitted from the platform to support research activities). Our findings suggest that investments in research data sharing have not yet achieved desired results.
随着电子病历（EHR）在美国的广泛应用和医疗信息互操作性的提高，大量数据可供知识发现之用。为了支持研究活动，包括由美国国立卫生研究院 (NIH)、电子病历供应商以及其他公共和私营部门实体资助的活动在内，已经开发了多个数据共享计划和工具。我们对 65 家主要研究机构（回复率为 77%）进行了调查，了解他们对十项计划/工具的使用情况和从中获得的价值，这些计划/工具包括美国国立卫生研究院（NIH）的 Accrual to Clinical Trials、Epic Corporation 的 Cosmos 以及 Observational Health Data Sciences and Informatics consortium。大多数机构参与了多个项目/工具，但报告的使用率相对较低（即使参与了项目/工具，他们也经常表示每月只有不到一个人受益于该平台以支持研究活动）。我们的研究结果表明，对研究数据共享的投资尚未达到预期效果。
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