Patient Interest in Sharing Personal Health Record Information

Abstract

BACKGROUND: Electronic personal health record (PHR) systems are proliferating but largely have not realized their potential for enhancing communication among patients and their network of care providers. OBJECTIVE: To explore preferences about sharing electronic health information among users of the U.S. Department of Veterans Affairs (VA) PHR system, My HealtheVet. DESIGN: Web-based survey of a convenience sample. SETTING: My HealtheVet Web site from 7 July through 4 October 2010. PARTICIPANTS: 18 471 users of My HealtheVet. MEASUREMENTS: Interest in shared PHR access and preferences about who would receive access, the information that would be shared, and the activities that users would delegate. RESULTS: Survey respondents were predominantly men (92%) and aged 50 to 64 years (51%) or 65 years or older (39%); approximately 39% reported poor or fair health status. Almost 4 of 5 respondents (79%) were interested in sharing access to their PHR with someone outside of their health system (62% with a spouse or partner, 23% with a child, 15% with another family member, and 25% with a non-VA health care provider). Among those who selected a family member other than a spouse or partner, 47% lived apart from the specified person. Preferences about degree of access varied on the basis of the type of information being shared, the type of activity being performed, and the respondent's relationship with the selected person. LIMITATIONS: The survey completion rate was 40.8%. Results might not be generalizable to all My HealtheVet users. CONCLUSION: In a large survey of PHR users in the VA system, most respondents were interested in sharing access to their electronic health information with caregivers and non-VA providers. Existing and evolving PHR systems should explore secure mechanisms for shared PHR access to improve information exchange among patients and the multiple persons involved in their health care. PRIMARY FUNDING SOURCE: Veterans Health Administration and The Robert Wood Johnson Foundation Clinical Scholars Program.