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

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.