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四个健康数据网络展示了共享的国家多用途大数据网络的潜力。

Four health data networks illustrate the potential for a shared national multipurpose big-data network.

作者信息

Curtis Lesley H, Brown Jeffrey, Platt Richard

机构信息

Lesley H. Curtis is a professor of medicine at Duke University, in Durham, North Carolina.

Jeffrey Brown is an assistant professor of population medicine at Harvard Medical School and the Harvard Pilgrim Health Care Institute, both in Boston, Massachusetts.

出版信息

Health Aff (Millwood). 2014 Jul;33(7):1178-86. doi: 10.1377/hlthaff.2014.0121.

Abstract

Information in electronic health data that are drawn from large populations of patients is transforming health care, public health practice, and clinical research. This article describes our experience in developing data networks that repurpose electronic health records and administrative data. The four programs we feature are the Food and Drug Administration's Mini-Sentinel program (which focuses on medical product safety), the National Patient-Centered Clinical Research Network (PCORnet, comparative effectiveness research), the National Institutes of Health's Health Care Systems Research Collaboratory Distributed Research Network (biomedical research), and ESPnet (public health surveillance). Challenges to these uses of electronic health data include understanding the factors driving the collection, coding, and preservation of the data; the extensive customization of different systems that collect similar data; the fragmentation of the US health care delivery system and its records; and privacy and proprietary considerations. We view these four programs as examples of the first stage in the development of a shared national big-data resource that leverages the investments of many agencies and organizations for the benefit of multiple networks and users.

摘要

来自大量患者群体的电子健康数据正在改变医疗保健、公共卫生实践和临床研究。本文描述了我们在开发重新利用电子健康记录和管理数据的数据网络方面的经验。我们重点介绍的四个项目分别是美国食品药品监督管理局的Mini-Sentinel项目(专注于医疗产品安全)、国家以患者为中心的临床研究网络(PCORnet,比较效果研究)、美国国立卫生研究院的医疗保健系统研究合作实验室分布式研究网络(生物医学研究)以及ESPnet(公共卫生监测)。电子健康数据的这些用途面临的挑战包括理解驱动数据收集、编码和保存的因素;收集类似数据的不同系统的广泛定制;美国医疗保健提供系统及其记录的碎片化;以及隐私和专有性考量。我们将这四个项目视为共享国家大数据资源开发第一阶段的示例,该资源利用众多机构和组织的投资,造福多个网络和用户。

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