Identifying Appropriate Federal Roles in the Development of
Electronic Personal Health Records: Results of a Key Informant Process

A swelling of the ranks of those championing change cannot substitute
for a concrete and deliberate implementation plan.¹

I. Introduction

Personal health records (PHRs) are an emerging technology to enable people electronically to manage their health information and that of others for whom they are authorized. They can be stand-alone applications or populated by electronic health records (EHRs). By involving consumers more fully in their own care and health management, PHRs have the potential not only to improve personal and family health but also to support national objectives for health care quality, safety, efficiency and outcomes. As Appendix 1 explains, this discussion paper uses the term "personal health record" in a broad sense, connoting both the electronic retrospective record itself and the many health management functions it enables.

Championed in Presidential addresses, the concept of widespread availability of interoperable, patient-controlled medical records is expressed in many activities within the federal government. At present, federal policy development regarding PHRs is framed largely by individual agency programs and objectives, while private sector development of PHRs is significantly intertwined with slow but growing momentum toward increased adoption of clinician-controlled electronic health records (EHRs). At the same time, questions are surfacing about the most appropriate ways for government to support positive trends and serve the public interest as PHRs evolve in both the public and private sectors. Even as people in government show a great deal of interest and optimism about the prospects for a higher level of consumer engagement via PHRs, they also recognize the challenges to be addressed in this area. As government moves into new areas, there is new potential for both cooperation and friction with the health care and information technology (IT) industries, and for both meeting public needs and arousing public concerns. Some agencies are communicating with others about their respective PHR activities, but at present most decisions related to PHRs are being made internally by individual agencies. As the scope of federal activity in this area increases, so does the need for more planning, pacing and coordination.

FACCT - Foundation for Accountability conducted a series of interviews to inform this discussion paper, which was commissioned by the Office of Disease Prevention and Health Promotion (ODPHP) of the Department of Health and Human Services (HHS).² (The individuals commissioned to write this discussion paper are referred to here as "the project team.") The purpose is not to conduct an inventory of federal PHR activities but to identify points of consensus and disagreement; to critically analyze the opportunities, decisions and challenges that agencies are likely to encounter in the near term; and to suggest possible priorities for the federal government. The findings are intended to stimulate and inform the policy discussion on this subject and to be useful to HHS as it develops its activities.³

The paper has five sections. Sections II and III, which are based on the interviews, review current leading-edge thinking and activity around PHRs within the federal government and the themes that emerged about potential federal contributions. Section IV comments on the challenges the government faces as it moves forward in this area. Section V summarizes key points and presents the project team's conclusions about priorities and possible pitfalls. Appendix 1 provides a brief overview of evolving conceptions of PHRs. The interviewees for this paper are listed in Appendix 2.

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