PCHRI 2006

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Conference Summary

PCHRI 2006, the Harvard Medical School Meeting on Personally Controlled Health Record Infrastructure, got off to an amusing start when Kenneth Mandl, M.D., M.P.H., a codirector of one of the CDC’s two Centers of Excellence in Public Health Informatics and an organizer of the conference, began by showing a clip from the TV show Seinfeld in which Elaine visits her doctor and finds she has been labeled “difficult” in her chart. Her repeated attempts to rectify this injustice and get treated for an annoying rash inevitably end in frustration.

The clip, Mandl said, was to “remind everyone why we’re here”: to improve care. But getting to that point — via the reduced medical errors and lowered costs that promise to result from patient-driven e-charts — will require working through many challenges, several of which were illuminated in the morning’s keynote address by John Halamka, M.D., M.S., the chief information officer of both the CareGroup Health System and Harvard Medical School.

In his role as chairman of the Healthcare Information Technology Standards Panel (HITSP), a public-private partnership that includes 206 member organizations under the sponsorship of the American National Standards Institute, Halamka oversees the coordination widely divergent health IT standards as part of a series of ongoing federal healthcare initiatives. Though he detailed numerous challenges at every level — from technical specifications, to how to create a self-sustaining model, to problems with perception on the part of both healthcare professionals and patients — he managed to set an optimistic tone that endured throughout the two-day conference. Barriers can be overcome, he concluded, as long as stakeholders strive not for compromise, in which “everyone is basically unhappy,” but rather for harmonization, which he defined as “everyone is basically achieving ‘good enough.’”

The afternoon began with a panel discussion on PCHRs in clinical care. Jeff Margolis, the CEO of the TriZetto corporation, which provides technology to 330 health plans in the United States, favorably compared highly portable, customer-controlled PHRs with electronic medical records, which are less sharable, and electronic health records, which are more costly to implement. Syed Tirmizi, M.D., and Ginger Price of the Veteran’s Health Administration then discussed that organization’s MyHealtheVet , a gateway to veterans’ health benefits and services that includes Web links, a personal health journal, and online prescription refills. Among the insights Tirmizi and Price provided are that veterans expect a Web site that works when they’re healthy as well as when they’re ill; that anticipates their needs rather than just reacting to them; and that works in a nonhospital environments, such as home care.

The final speaker of the panel, Ken Mandl, discussed various PHR models and asked, “Why do we all of a sudden care about this so much?”

“One reason,” he concluded, “is we have the technology that will allow this to happen. The other is that primary care is not what it used to be. I think we should recognize explicitly that part of what we’re doing is curating a patient’s information in place of the old country doc, who used to do that for a family for their whole lives.”


The afternoon sessions began with a second panel, on PCHRs and employers, plans, and public health. The federal perspective was presented by Brad Perkins, M.D., M.B.A., chief innovation officer of the Centers for Disease Control and Prevention, and Michael Sayre, Ph.D., Health Scientist Administrator at the National Institutes of Health’s National Center for Research Resources. Both men agreed that PCHRs could create a channel for the delivery of scientific and evidence-based guidelines, satisfy consumer demand for wellness information, respond to looming health crises such as the obesity epidemic and the possibility of a pandemic influenza outbreak, and contribute to biomedical research.

Michael Brown, M.D., CIO of Harvard University Health Services — which as an insurer carries 20,000 students, 7,000 HMO members, and 2,000 Medicare patients — spoke about the role of PCHRs in a university setting. The majority of these consumers, he said, are sophisticated and time-constrained, and have high expectations, asking, he said, “Why is the rest of their life online and not their medical record?” He illustrated just how nascent a completely functioning PCHR is when he told the story of a Korean student who came in a few years ago with his chart on a CD. “Since that time we’ve come up with a really good system for managing that kind of situation. We print out what we care about and scan it into the medical record.”

A representative from Intel Corporation provided an employer’s point of view. “It is about competitiveness,” said Omid Moghadam, director of PHR Programs for Intel. A cost-quality disparity exists, he noted, since employers pay into the system three times: through health insurance for employees, through corporate taxes, and through cost-shifting. PCHRs offer several ways to save, including risk-factor reduction as part of health and wellness programs; waste-trimming resulting from interoperability; greater job satisfaction arising from employees’ engagement in their own healthcare; and best purchasing practices. “What we get buy is what we pay for,” Moghadam said.

After the second panel, the meeting split into three tracks: Business Models, Societal Implications and Standards & Technology. William Crawford, of the Office of Policy at the US Centers for Medicare and Medicaid Services and a co-chair of the conference, asked the attendees to remember that, while they were splitting into three groups, they were “ultimately looking at the same set of issues through three different lenses” and encouraged attendees to try a track that was outside their traditional comfort zone. Each of the conference tracks was introduced by a panel discussion, followed by a reception in the main hall of the Countway Library.


The meeting’s second keynote speech was delivered Wednesday morning by Mitchell Kapor, the president and chair of the non-profit Open Source Applications Foundation and the founder of Lotus Development Corporation and the Electronic Frontier Foundation. His message was simple but critical: that those working on the development of PCHRs must study and profit from the lessons learned from the success of the personal computer and the Internet. “Open systems and open standards and decentralized architecture — which emphasizes coordination over hierarchical control — were responsible for powerful enabling technologies,” he said. “That is the way to spur innovation and deliver the greatest benefits of new information technology infrastructure.”

Much of the conference time was spent in individual “track” sessions, in which panelists spoke for a short time and then opened the floor to discussion. The three tracks covered business models for PCHRs, societal implications of PCHRs, and technical standards and challenges. By the end of the second day, track moderators were ready to present their findings, divided in each case between resolved and unresolved issues. Among the former, the three tracks agreed that PCHRs should accommodate unanticipated uses, be multiplatform and flexible, contain carefully encrypted data, make optimal use of existing resources, and meet fundamental consumer needs through features such as searchability and the possibility of monetizing personal data through third-party purchase for clinical trials, for example.

Among the latter, unresolved, issues were the question of whether academics, government, or the private sector will lead the way in the development of PCHRs; whether the concept of “control” should be interpreted as ownership or consumer-centrism; and how to reach the critical mass of users necessary to make PCHRs viable in a commercial market. Isaac Kohane, M.D., Ph.D., moderator of the technical standards track and, as director of the hosting Countway Library, a conference organizer, noted that though the idea that government-supported regional health information organizations (RHIOs) “have been looked at as the cog vehicle for integrating patient data to create a lifetime medical record, because of this meeting it’s much clearer that PCHRs might be just as important and perhaps the only viable vehicle to achieve that goal.”

The meeting’s cochairs, Ken Mandl and William Crawford, considered the conference a great success.

“We brought together leaders across industry, healthcare, government, and academia, all of whom are actively engaged in funding, designing, or using personally controlled health record infrastructure,” said Mandl. “Many of their plans are nascent and malleable, so the meeting was the perfect setting at the perfect time for revealing areas of agreement and disagreement over definitions and approaches.” There is danger, he added, in the potential for the fragmentation of these various efforts and the creation of many incompatible PCHRs for every American. “The opportunity, though, is to have an interoperable infrastructure that empowers patients to improve their care and their health. The meeting launched a series of ongoing activities toward this goal.”

Crawford agreed. “We’re very happy with the degree of collaboration and in particular the willingness of people to leave their organizational affiliations at the door,” he said. “One of the reasons the meeting was so successful was that we had quite possibly the widest set of stakeholders that have ever got together in one place to look specifically at PHR issues. I think everyone learned quite a bit about the perspectives taken by the other groups, and that’s very valuable — for example, the viewpoint of organizations like the CDC and the National Cancer Institute are not necessarily on the radar screen of large employers.” He predicted that many of the personal connections made will be lasting ones. “I saw a number of conversations,” he said, “that will definitely lead to future collaborations, not only in terms of research, but also for the government’s public health mission and new opportunities for private enterprise.”