Medical Device Daily Washington Editor

WASHINGTON — The National Committee on Vital and Health Statistics of the Department of Health and Human Services (HHS; Washington) on Wednesday held the first of a two-day program of meetings to discuss the development of personal health records (PHRs) and the government's role in the process — that role seen as critical to the evolution toward and development of PHRs.

PHRs — in theory, if not in practice — are an individual's complete healthcare information concerning diagnoses, procedures performed, medications prescribed, doctors visited, and so forth, which can be viewed at anytime by the patient and different healthcare providers.

A report is currently being compiled to review the part federal agencies play in supporting and developing PHRs. The project is being conducted by Connecting for Health, established by the Markle Foundation (New York). Connecting for Health is a public- and private-sector collaboration designed to address the barriers to development of an interconnected health information infrastructure in the U.S.

So far, 11 federal agencies have been interviewed for the study, including the FDA, the Centers for Medicare & Medicaid Services (Baltimore), the Department of Veterans Affairs and the Department of Defense (both Washington), and the Centers for Disease Control and Prevention (Atlanta).

“PHRs can have broad population effects,“ said Cynthia Bauer, PhD, from the Office of Disease Prevention and Health Promotion at HHS. “We commissioned this study to identify the different approaches and strategies that were being implemented across HHS and other federal agencies. The paper was not intended to be an inventory of what federal agencies are doing with PHRs, but is intended to identify areas of consensus and opportunity.“

David Lansky, PhD, director of Markle's health program and lead author of the PHR policy white paper, presented some of the results of his research, which, he said, is only halfway toward completion.

Lansky said that PHRs have three major roles within federal agencies. First, he said PHRs extend and enhance current agency activities, providing “a new platform for business as usual.“ He also said the PHRs allow new agency roles and activities. Third, and much more broad, PHRs are part of a transformation vision for healthcare and overall population health improvement.

Lansky reported a “high level“ of enthusiasm for PHRs across federal agencies. The level of interest, he said, exists along with a recognition of the challenges that must be worked through to make universal health records available for all Americans.

A consistent theme his study has revealed so far is the belief that federal leadership is critical to make PHRs work. Lansky said “federal“ can mean either integrated, coordinated government action or “a disparate array of uncoordinated activities by different federal entities.“

Most agencies recognize that some form of coordination and vision are needed as the framework of federal involvement with PHRs moves forward, including ongoing partnerships with industry, Lansky said.

Just as with private-sector PHR and electronic health record (EHR) efforts, there are privacy and technology concerns, legal, interoperability and cost issues to be ironed out.

Overall, he said a PHR should be controlled and understood by the consumer/patient. It should be accessible from any place and any time, he said, as well as being private, secure and transparent.

Perhaps prior to dealing with those varying concerns, Lansky said, a solid definition of what a PHR is should be defined. He said there is currently “no uniform understanding or definition“ of exactly what a PHR is, and it can mean different things to different agencies and individuals.

For example, where do PHRs and EHRs begin? The overlap is something that needs to be ironed out as the process moved forward, committee members advised. Others raised concern over privacy issues if payers such as Medicare and Medicaid have complete access to records.

“There is ambiguity in the whole concept,“ said Simon Cohn, MD, national director for health information policy for Kaiser Permanente (Oakland, California). “It is an unsatisfying set of concepts — what these things are and how they fit together.“

Cohn praised Lansky and his colleagues for their work so far on the report, and said that only through trial and error will a process be reached.

President George Bush appointed David Brailer as the federal government's first national coordinator for health information technology in May 2004. The appointment was part of a plan to promote adoption of electronic personal health records for all Americans within a decade.

However, Brailer's office did not receive funding in the 2005 budget act that was passed late last year. His office originally was slated for $100 million in funding, but the final version of budget appropriations cut funding completely. This left many observers questioning the fate of Bush's unfunded mandate.