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美国综合健康数据:迈向公益的步骤。

Aggregate health data in the United States: steps toward a public good.

机构信息

Department of Medicine, Stanford Medical Center, CA 94306, USA.

出版信息

Health Informatics J. 2013 Jun;19(2):137-51. doi: 10.1177/1460458212462077.

Abstract

The rise of electronic medical records promotes the collection and aggregation of medical data. These data have tremendous potential utility for health policy and public health; yet there are gaps in the scholarly literature. No articles in the medical or legal literature have mapped the "information flows" from patient to database, and commentary has focused more on privacy than on data's social value and incentives for production. Utilizing short case studies of data flows, I show that ample data exist, much of them are available online through government websites or hospital trade associations. However, available information comes from billing records rather than medical records. Turning to legal and policy recommendations for better provision, I note that weak intellectual property law has ironically led to stronger control over health data through private contracts and technological barriers, as these methods of protection lack any exceptions for noncommercial use. I conclude with a series of policy proposals to make data more available.

摘要

电子病历的兴起促进了医疗数据的收集和聚合。这些数据对于卫生政策和公共卫生具有巨大的潜在应用价值;然而,学术文献中存在空白。医学或法律文献中没有文章描述过“信息流”从患者到数据库的过程,评论更多地关注隐私问题,而不是数据的社会价值和生产激励。通过对数据流的简短案例研究,我表明存在大量数据,其中许多数据可通过政府网站或医院行业协会在线获得。然而,现有的信息来自计费记录,而不是医疗记录。在转向更好地提供数据的法律和政策建议时,我注意到,薄弱的知识产权法通过私人合同和技术壁垒导致对健康数据的更强控制,因为这些保护方法对非商业用途没有任何例外。最后,我提出了一系列政策建议,以提高数据的可用性。

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