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JAMIA 2009;16:14-17 doi:10.1197/jamia.M2854
  • The Practice of Informatics
  • Viewpoint Paper

Governance for Personal Health Records

  1. Shane R Retia,b,
  2. Henry J Feldmana,
  3. Charles Safrana,c
  1. aDivision of Clinical Informatics, Department of Medicine, Beth Israel Deaconess Medical Centre, Boston, MA
  2. bDepartment of General Practice and Primary Health Care, University of Auckland, Auckland, New Zealand
  3. cNational Center for Public Health Informatics, Centers for Disease Control and Prevention, Atlanta, GA
  1. Correspondence: Shane Reti, Beth Israel Deaconess Medical Center, Division of Clinical Informatics, 1330 Beacon Street, Suite 400, Brookline, MA 02446; e-mail: <sreti{at}bidmc.harvard.edu>
  • Received 12 May 2008
  • Accepted 21 September 2008

Abstract

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.

Footnotes

  • The authors thank P. Hockey (Southampton University Hospitals Trust), R. McDonald (University of Manchester), P. McNair (Dept of Human Services, Victoria), W. Slack (Harvard Medical School), H. Bleich (Harvard Medical School) for critical review of the manuscript.

  • Supported by the Commonwealth Fund, a private independent foundation based in New York City. The views presented here are those of the authors and not necessarily those of the Commonwealth Fund, its directors, officers, or staff.

  • Study approval 2007P-000369 was obtained from Beth Israel Deaconess Medical Center, Committee on Clinical Investigations, Boston, Massachusetts, USA, 02215.

  • All authors declare that they are independent of funders for this research.

  • Parts of this study were presented at the AMIA Spring Conference, Arizona, May 30 2008.

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