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

描述(由申请人提供)：健康信息技术(HIT)被认为是提高美国医疗保健质量和成本效益的核心。由于最近的重大联邦投资，HIT的扩散预计将在未来五年激增。随着HIT的普及，它将成为详细的、人群水平的健康信息的有效来源，并为美国如何提供医疗保健提供新的见解。这些数据库将对包括基因组学、比较有效性研究、医疗服务研究和临床试验在内的研究具有重要价值。此外，还有提高公共卫生能力、提高卫生保健质量和改善卫生保健公平的潜力。与此同时，人们对如何将健康信息用于营销等商业目的以及如何保护隐私提出了关切。尽管《健康保险可携带性和责任法》(HIPAA)规定了健康信息的共享，但该法案没有涵盖所有用途或用户，并施加了医学研究所得出的阻碍某些形式研究的限制。这项提议的总体目标是为包括研究在内的健康信息的二次利用制定一个新的框架--一个由患者个人偏好形成的框架，以实现人口健康目标为导向。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，遗传和非遗传)和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进行权衡。这些目标将通过对利用实验设计(即联合分析、问题框架的随机化)的患者进行的全国调查来实现，该设计将揭示患者对如何共享健康信息以供其个人医疗保健以外的用途的偏好。在这个项目结束时，我们的结果将提供一个政策路线图，反映患者对挖掘卫生信息技术的非凡研究和公共卫生潜力的偏好。 公共卫生相关性：未来五年卫生信息技术的扩展将为推进研究和公共卫生带来新的机遇。然而，这也引发了人们对如何保护患者自主权和隐私的伦理担忧。这项研究将衡量患者的偏好，是否、何时以及如何共享电子健康信息，以用于个人医疗以外的其他用途。总体目标是开发一个新的框架，用于共享卫生信息，以促进由患者个人偏好决定的公共卫生。

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.