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用于二次、跨机构临床研究的健康数据交换策略。

Strategies for health data exchange for secondary, cross-institutional clinical research.

机构信息

University of Geneva, Switzerland.

出版信息

Comput Methods Programs Biomed. 2010 Sep;99(3):230-51. doi: 10.1016/j.cmpb.2009.12.001. Epub 2010 Jan 20.

Abstract

Secondary use of health data has a vital role in improving and advancing medical knowledge. While digital health records offer scope for facilitating the flow of data to secondary uses, it remains essential that steps are taken to respect wishes of the patient regarding secondary usage, and to ensure the privacy of the patient during secondary use scenarios. Consent, together with depersonalisation and its related concepts of anonymisation, pseudonymisation, and data minimisation are key methods used to provide this protection. This paper gives an overview of technical, practical, legal, and ethical aspects of secondary data use and discusses their implementation in the multi-institutional @neurIST research project.

摘要

健康数据的二次利用在增进和推进医学知识方面发挥着重要作用。虽然电子健康记录为促进数据向二次利用的流动提供了机会,但仍有必要采取措施尊重患者对二次利用的意愿,并确保在二次利用场景中患者的隐私得到保护。同意、去识别化以及与之相关的匿名化、假名化和最小化数据概念是提供这种保护的关键方法。本文概述了二次数据使用的技术、实践、法律和伦理方面,并讨论了它们在多机构@neurIST 研究项目中的实施情况。

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