Governance for personal health records.

Personal health records (PHR) are a modern health technology with the ability to engage patients more fully in their healthcare. Despite widespread interest, there has been little discussion around PHR governance at an organizational level. We develop a governance model and compare it to the practices of some of the early PHR adopters, including hospitals and ambulatory care settings, insurers and health plans, government departments, and commercial sectors. Decision-making structures varied between organizations. Business operations were present in all groups, but patients were not represented in any of the governance structures surveyed. To improve patient-centered care, policy making for PHRs needs to include patient representation at a governance level.