Personal health records (PHRs) are an emerging technology to enable people to manage their health information and health care transactions electronically. By facilitating a host of health management activities, PHRs have the potential not only to improve personal and family health but also to support major national health objectives. Several federal agencies have begun to include PHRs in their programs and plans. In speeches, the President has championed the widespread availability of interoperable, electronic, patient-controlled medical records. This expanding federal activity is generating questions about how government can best support positive trends and serve the public interest as PHRs evolve. Awareness is growing within and beyond government of the need for a more strategic and coordinated federal approach in this area.
This discussion paper is the product of a small study by FACCT-Foundation for Accountability, commissioned by the Office of Disease Prevention and Health Promotion of the Department of Health and Human Services (HHS). The study identified strategies and perspectives on federal roles in PHRs that are emerging within and outside government. The primary source is a series of 15 interviews with individuals in key positions in the federal government and the health care and health information technology industries. (The interviewees are listed in Appendix 2.) The paper builds on a recent series of foundational reports by Connecting for Health, a collaborative among government, industry and health care leaders. It also draws on presentations and discussions at two recent hearings on PHR models held by the National Committee on Vital and Health Statistics (NCVHS) Workgroup on the National Health Information Infrastructure (November 12, 2004 and January 5-6, 2005). The project team’s findings, commentary and conclusions are intended to inform the policy discussion by identifying points of consensus and disagreement and suggesting possible priorities for the federal government as it moves forward.
Lansky, David, Lemieux, Josh, Kanaan, Susan, ODPHP Website,