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隐私设计在卑诗省人口署:一个案例研究,描述了隐私敏感的个人信息二次利用的技术、行政和物理控制措施,用于公共利益的研究。

Privacy by Design at Population Data BC: a case study describing the technical, administrative, and physical controls for privacy-sensitive secondary use of personal information for research in the public interest.

机构信息

Population Data BC, School of Population and Public Health, University of British Columbia, Vancouver, Canada.

出版信息

J Am Med Inform Assoc. 2013 Jan 1;20(1):25-8. doi: 10.1136/amiajnl-2012-001011. Epub 2012 Aug 30.

Abstract

Population Data BC (PopData) is an innovative leader in facilitating access to linked data for population health research. Researchers from academic institutions across Canada work with PopData to submit data access requests for projects involving linked administrative data, with or without their own researcher-collected data. PopData and its predecessor-the British Columbia Linked Health Database-have facilitated over 350 research projects analyzing a broad spectrum of population health issues. PopData embeds privacy in every aspect of its operations. This case study focuses on how implementing the Privacy by Design model protects privacy while supporting access to individual-level data for research in the public interest. It explores challenges presented by legislation, stewardship, and public perception and demonstrates how PopData achieves both operational efficiencies and due diligence.

摘要

人口数据不列颠哥伦比亚省(PopData)是一个创新的领导者,致力于为人口健康研究提供链接数据的便利。来自加拿大各学术机构的研究人员与 PopData 合作,提交涉及链接行政数据的项目的数据访问请求,无论是否有他们自己收集的数据。PopData 及其前身不列颠哥伦比亚省链接健康数据库已经促成了 350 多个研究项目,分析了广泛的人口健康问题。PopData 在其运营的各个方面都嵌入了隐私保护。本案例研究重点介绍了实施隐私设计模型如何在支持为公共利益进行的研究访问个人层面数据的同时保护隐私。它探讨了立法、管理和公众看法带来的挑战,并展示了 PopData 如何实现运营效率和尽责义务。

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N Engl J Med. 2004 Apr 1;350(14):1452-3. doi: 10.1056/NEJMe048027.
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Research use of linked health data--a best practice protocol.关联健康数据的研究用途——最佳实践方案。
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