Health Literacy
Electronic Personal Health Records: Lessons From Abroad
Opinion
March 2006
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Sumbit your Perspectives Commentary
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By Don Detmer
President and Chief Executive Officer
American Medical Informatics Association
Electronic personal health records (ePHRs) allow individuals to manage their health information. AARP commissioned us to study approaches to this evolving technology in Australia, Canada, England, and New Zealand with the goal of identifying best practices and lessons that may be applicable to development of ePHRs in the United States. These countries are ahead of the United States with respect to developing the national health information infrastructure (NHII) that would be needed to support widespread ePHR use. With the exception of England’s National Health Service MyHealthSpace, however, there is not much ePHR activity in these countries’ public or private sectors.
We conclude that the disparity in interest in ePHRs is due primarily to differences in the cultures that underlie the health care systems of the United States and the countries studied. While the United States emphasizes individualism, the nations studied focus on the collective or social solidarity. These cultural differences lead to divergent approaches to health care delivery, financing, and NHII planning, which, in turn, create different levels of demand for a tool that enables patients to manage and better influence their own health care services. The cultural split also accounts for differences in attitudes toward personal health identifiers and the political will of elected representatives to set policy relating to them.
We identify five areas where U.S. policy makers can learn from other countries. First, there is a need for communication and ongoing coordination among the public and private organizations that have a role to play in ePHR development and diffusion. Public and private organizations involved in NHII activities should develop a focused research agenda for advancing ePHRs and agree on a few central policy initiatives to generate the political will to assure federal legislation to support a functional interoperable NHII for the nation.
Second, public advocacy and policy groups need to consider whether the current U.S. privacy framework will support widespread implementation of ePHRs. In particular, they should evaluate whether ePHRs can be implemented on a broad scale without unique patient identifiers.
Third, several good examples of consumer engagement and education (e.g., Australia’s Consumer’s Health Forum and England’s NHS Connecting for Health) provide guidance to ePHR developers on how to obtain consumer opinions about and support for ePHRs.
Fourth, AARP and other public advocacy groups can strengthen efforts to improve health literacy in the U.S. population and develop a more comprehensive approach to improving the computer literacy of key ePHR user groups (e.g., senior citizens, individuals with chronic disease) as a means of advancing ePHR implementation. The European Union’s e-Citizen program provides one model for such an effort.
Fifth, the growing interest in health information among citizens of all nations highlights the urgency for international standards of terminology and classifications of health, illness, and health care. As part of efforts to advance interoperability, ONC should assure sufficient collaboration with other nations and the World Health Organization (WHO) to develop and maintain international standards that will facilitate global sharing of medical knowledge and enable integration of systems incorporating ePHRs.
Interest in personal health records has been growing in the United States. A variety of U.S. organizations are exploring important issues surrounding ePHRs and health care providers, researchers and insurers are developing, evaluating, or implementing ePHRs. While these activities provide opportunity for broad input and can serve to facilitate innovation, there is a need for regular communication and ongoing coordination among the organizations involved in ePHR development and diffusion. Of course, lessons from abroad can also inform U.S. efforts with personal health records.