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患者数据保密与患者权利。

Patient data confidentiality and patient rights.

作者信息

Sadan B

机构信息

Information Systems Division, Hadassah Medical Organization, P.O. Box 12000, Jerusalem 91120, Israel.

出版信息

Int J Med Inform. 2001 Jun;62(1):41-9. doi: 10.1016/s1386-5056(00)00135-0.

Abstract

There has been a recent trend to gather and record more comprehensive and more detailed personal medical information in computerized databases. Retrieval and access are much easier from electronic records than from hard copies stored in the archives of care-providing institutions. The Institute of Medicine voiced concern that these developments raised numerous problematic issues, the most disturbing of which is a much more widespread and systematic violation of privacy via what they called 'authorized abuse', i.e. authorized users abusing their access privileges. Other worries stemmed from the sharing of patient information among different entities. Multitudes of organizations receive information about patients' health records, often without their knowledge or consent. These include care providers, insurers, pharmacists, employers, life insurance companies and marketing firms. This article addresses the issues of medical data ownership and some health data-recording problems to which we propose co-ownership and co-documentation as part of the solution. We believe that a cooperative approach will help to maintain greater accuracy of personal medical data, written in language that can be shared and understood by the consumers and not one couched in terminology understandable only to professional personnel and to delegate the power to the patient to decide when and to whom to give authorization for its use by a third party and for research.

摘要

最近出现了一种趋势,即在计算机化数据库中收集和记录更全面、更详细的个人医疗信息。从电子记录中检索和获取信息比从存储在提供护理机构档案中的硬拷贝要容易得多。医学研究所表示担心,这些发展引发了许多有问题的问题,其中最令人不安的是通过他们所谓的“授权滥用”,即授权用户滥用其访问权限,更广泛、更系统地侵犯隐私。其他担忧源于不同实体之间患者信息的共享。众多组织在患者不知情或未经其同意的情况下接收有关患者健康记录的信息。这些组织包括医疗服务提供者、保险公司、药剂师、雇主、人寿保险公司和营销公司。本文讨论了医疗数据所有权问题以及一些健康数据记录问题,我们建议将共同所有权和共同记录作为解决方案的一部分。我们认为,合作方法将有助于保持个人医疗数据的更高准确性,用消费者能够共享和理解的语言书写,而不是仅用专业人员才能理解的术语,并赋予患者权力,以决定何时以及向谁授予第三方使用其数据和进行研究的授权。

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