Secondary Uses of Health Information: Patient Preferences for Sharing and Consent

描述（由申请人提供）：卫生信息技术（HIT）被认为是提高美国卫生保健质量和成本效益的核心。由于最近联邦政府进行了大量投资，预计未来五年内，信息技术的普及将激增。随着HIT的普及，它将成为详细的、人口层面的健康信息的有力来源，并提供有关美国医疗保健如何提供的新见解。这些数据库将对包括基因组学、比较有效性研究、卫生服务研究和临床试验在内的研究具有重要价值。此外，还有可能提高公共卫生能力、提高卫生保健质量和改善卫生保健公平性。与此同时，人们对健康信息可能如何用于营销等商业目的以及如何保护隐私等问题表示关切。尽管《健康保险流通与责任法案》（HIPAA）规定了健康信息的共享，但该法案并未涵盖所有用途或用户，并施加了一些限制，医学研究所认为这些限制阻碍了某些形式的研究。这项建议的总目标是为包括研究在内的卫生信息的二次利用制定一个新的框架——一个由病人个人偏好形成并面向实现人口健康目标的框架。在此过程中，我们将阐明消费者如何区分不同类型的电子健康信息（例如遗传与非遗传）以及该信息的不同用户和用途，以及他们如何在自主和推进研究之间的同意偏好中做出权衡。这些目标将通过利用实验设计（即联合分析，问题框架的随机化）对患者进行全国调查来实现，该调查将揭示患者对如何将健康信息共享用于个人医疗保健以外的其他用途的偏好。在本项目结束时，我们的结果将提供一个政策路线图，反映患者对利用卫生信息技术的非凡研究和公共卫生潜力的偏好。

DESCRIPTION (provided by applicant): Health information technology (HIT) is believed to be central to improving the quality and cost effectiveness of health care in the United States. As a result of recent major federal investment, the diffusion of HIT is expected to surge in the next five years. As HIT becomes widespread, it will be a potent source of detailed, population-level health information and provide new insights on how health care is delivered in the U.S. These databases will have significant value for research including genomics, comparative effectiveness studies, health services research, and clinical trials. In addition, there is potential for improving public health capabilities, improving health care quality, and improving health care equity. At the same time, concerns have been raised about how health information may be used for commercial purposes such as marketing and how privacy is protected. Although the Health Insurance Portability and Accountability Act (HIPAA) regulates the sharing of health information, the Act does not cover all uses or users and imposes restrictions that the Institute of Medicine has concluded hinders some forms of research. The overall goal of this proposal is to develop a new framework for secondary uses of health information including research - a framework shaped by individual patient preferences and oriented toward achieving population health goals. In doing so, we will elucidate how consumers distinguish between different types of electronic health information (e.g. genetic vs. non-genetic) and different users and uses of that information and how they make tradeoffs in their consent preferences between autonomy and advancing research. These aims will be addressed through a national survey of patients taking advantage of an experimental design (i.e. conjoint analysis, randomization of question frames) that will uncover patient preferences on how health information should be shared for uses other than their personal medical care. At the end of this project, our results will provide a policy roadmap reflecting patient preferences for tapping the extraordinary research and public health potential of health information technology. PUBLIC HEALTH RELEVANCE: The expansion of health information technology over the next five years will bring new opportunities to advance research and public health. However, it also raises ethical concerns about how patient autonomy and privacy will be preserved. This research will measure patient preferences on if, when, and how electronic health information should be shared for uses other than personal medical care. The overall goal is to develop a new framework for sharing health information to advance public health shaped by individual patient preferences.