Upshur R E, Goel V
Department of Family and Community Medicine and Public Health Sciences, Joint Centre for Bioethics, University of Toronto, Canada.
BMC Med Inform Decis Mak. 2001;1:1. doi: 10.1186/1472-6947-1-1. Epub 2001 Apr 25.
Developments in information technology promise to revolutionise the delivery of health care by providing access to data in a timely and efficient way. Information technology also raises several important concerns about the confidentiality and privacy of health data. New and existing legislation in Europe and North America may make access to patient level data difficult with consequent impact on research and health surveillance. Although research is being conducted on technical solutions to protect the privacy of personal health information, there is very little research on ways to improve individuals power over their health information. This paper proposes a health care information directive, analogous to an advance directive, to facilitate choices regarding health information disclosure.
A health care information directive is described which creates a decision matrix that combines the ethical appropriateness of the use of personal health information with the sensitivity of the data. It creates a range of possibilities with in which individuals can choose to contribute health information with or without consent, or not to contribute information at all.
The health care information directive may increase individuals understanding of the uses of health information and increase their willingness to contribute certain kinds of health information. Further refinement and evaluation of the directive is required.
信息技术的发展有望通过及时、高效地提供数据访问来彻底改变医疗保健服务的提供方式。信息技术也引发了一些关于健康数据保密性和隐私性的重要问题。欧洲和北美的新立法及现有立法可能会使获取患者层面的数据变得困难,从而对研究和健康监测产生影响。尽管正在开展关于保护个人健康信息隐私的技术解决方案的研究,但关于如何增强个人对其健康信息控制权的研究却很少。本文提出一项类似于预先指示的医疗保健信息指令,以促进有关健康信息披露的选择。
文中描述了一项医疗保健信息指令,该指令创建了一个决策矩阵,将个人健康信息使用的道德适当性与数据的敏感性相结合。它创造了一系列可能性,个人可以选择同意或不同意提供健康信息,或者根本不提供信息。
医疗保健信息指令可能会增强个人对健康信息用途的理解,并提高他们提供某些类型健康信息的意愿。该指令需要进一步完善和评估。