Background In many countries, there has been substantial progress in establishing the electronic transmission of patients’ health information between health care providers, but little is known about how best to engage patients in the process.ObjectiveWe explored patients’ views about sharing of electronic health information and their preferences for learning about and participating in this process.MethodsPatients in one Massachusetts community in the northeastern United States were recruited to participate in focus-group discussions. Prior to discussion, participants completed a written questionnaire that captured their reactions to draft educational materials and a consent form. The discussion moderator and two physicians analyzed the moderator’s detailed notes from each session and participants’ written comments, using an immersion-crystallization approach.ResultsThree dominant themes emerged: (1) concerns about privacy and security, (2) the potential benefit to a person’s health, and (3) the desire for more information about the consent process. On the pre-discussion questionnaire, 55 out of 62 participants (88%) indicated that they would provide consent for their information to be shared electronically among their health care providers, given the materials they had reviewed.ConclusionsPatients are enthusiastic about electronic health information exchange, recognizing its capacity to improve the quality and safety of health care; however, they are also concerned about its potential to result in breached privacy and misuse of health data. As the exchange of electronic health information becomes more widespread, policy makers will need to ensure that patients have access to concise educational materials and opportunities to engage in conversations about the risks and benefits of participation.

Health information exchange (HIE) offers tremendous potential for the future, but its widespread adoption and sustainability depend upon engaging patients and earning their trust. Patients' willingness to allow their data to be shared will drive the usefulness of HIE and therefore the sustainability of regional health information organizations (RHIOs H e a lt h i n f o r m at i o n t e c h n o l o gy (IT) and health information exchange (HIE) are increasingly viewed as key steps in improving the quality, safety, and efficiency problems that plague U.S. health care delivery. A linchpin of these efforts is patient engagement. The promise of health IT-electronic health records (EHRs), HIE, and, more recently, personal health records (PHRs)-has been "just around the corner" for a number of years now. Most studies have concluded that considerable value would accrue to all stakeholders if regional HIE was realized in the United States.1 Despite this, RHIOs continue to struggle with establishing a sustainable business model. 2A necessary but not sufficient condition for RHIOs' sustainability is that they bring together enough clinical information to be valuable. Patients' decision making could play an increasingly important role in determining how much information is shared and how it is shared. As patients awaken to their role as stewards of their medical information, HIE will only be as good as patients' willingness to allow their data to be shared in ways that clinicians find valuable.There are approximately 130 active HIE initiatives in the country today. The number of operating HIE organizations, however, is much smaller (forty-two), E n g a g i n g P a t i e n t s