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

V. Conclusion: Emerging Decisions and Priorities for the Federal Government

This paper discusses the thinking about PHRs and related activities across multiple federal agencies. The study's interviewees displayed significant consensus about federal roles in two priority areas:

• Standardization in data:
  The federal government should facilitate standards-based approaches to health data collection and exchange.
• Experimentation in models:
  The federal government should encourage, finance, coordinate and help disseminate findings from a wide range of experiments to find the most successful PHR applications and models.

The project team reached a number of conclusions based on these areas of consensus, other study findings, and its members' experience in this field. Underlying the analysis is the reality that through its many roles, the federal government is an inevitable player in the evolution of personal health records. The President has set the goal that "every American" will have access to interoperable electronic health records that they control within a decade. "Personalizing care," including the promotion of PHRs, is one of four overarching goals of the HHS Strategic Framework for health information technology, released in July 2004. Fundamentally, this effort recognizes that the information flow within the U.S. health-care system is fatally fragmented. PHRs fit into a vision of a better future as a tool to help improve the flow of information for better health and health care. This vision calls for truly interoperable electronic applications—available anytime and anywhere—that organize a plurality of personal health data sources and services for the benefit of the individual patient and family.

There is a high level of enthusiasm for PHRs among federal health policy thought leaders, and policymakers are under pressure to make tangible strides toward the President's goals. This paper has noted a wide range of PHR-related activity within the federal government and in the private marketplace. The pluralistic backdrop creates a relatively open landscape of possibilities for federal investment in PHRs.

The government can be most effective in this area by avoiding two possible pitfalls: 1) sponsoring a superficial one-size-fits-all PHR offering and 2) allowing a plurality of agencies to offer independent PHR applications with little coordination or strategic vision. Either path could add to the fragmentation of health care services that the public currently faces, and potentially distract from a historic opportunity to transform health and healthcare in this country.

As an example of the first pitfall, the case can be made that it is technologically feasible today for the federal government to sponsor a national, one-size-fits-all PHR application, free for any citizen to log in to a Web site and store self-entered personal health information. (A paper-based option would need to be offered as well for those without Internet access or reservations about a Web-based repository.) Certainly, there are technology vendors with desire to fulfill such a project, and it would provide an opportunity for federal agencies to publicize an ostensibly bold launch in the near term. However, Connecting for Health research clearly shows that the government is not the public's favored potential supplier of PHRs. (One's own doctor, not surprisingly, is.) Moreover, commercial Web-based PHR products that rely solely on consumer self-sourced information have not been embraced by consumers. The project team therefore suggests that there is little basis upon which to assume a high level of utilization from a government-sponsored, general-purpose PHR that is not meaningfully integrated with health care providers and other sources of personal health data. As a result, it is likely that the outcome of any overly expedited federal PHR sponsorship would fall far short of the transformative vision articulated by the President.

The second pitfall—the lack of adequate support for coordination among agencies with a role in PHR development— is an inevitable hazard in an enterprise as large as the federal government. The study team commends the establishment of ONCHIT to serve in a coordinative role. It is important to recognize, however, that ONCHIT does not currently have adequate resources to play an instrumental role in guiding all of its Strategic Framework recommendations into action. Dr. Brailer has said that PHRs are not a first-tier priority. The priorities his office has set are reasonable, given its limits of staffing and funding. Still, the project team believes that the task of coordinating federal PHR activities will be much harder a few years from now when programs are that much further developed.

In conclusion, this discussion paper proposes the following near-term steps, beginning with appropriate levels of funding for ONCHIT to serve as the office with overall responsibility for coordinating federal PHR activities. Possible tasks include:

• Clarifying objectives by defining a process for research-driven answers to questions such as those posed in Section IV of this paper.
• Strengthening the mechanisms and resources available for coordinating the PHR-related activities of federal agencies. The need for coordination applies equally to activities within agencies, between agencies, and with private industry—the latter best carried out in public-private bodies.
• Assigning responsibilities and specifying the metrics to evaluate progress toward meeting those objectives. Such responsibilities may include:
  • Expediting federal implementation of CHI.
  • Developing and maintaining an inventory of PHR-like activities sponsored or funded by federal agencies.
  • Developing a government-wide research plan to advance the federal approach to PHRs.
  • Nurturing a public-private policy framework, including the need to address, for example
    • Achieving full interoperability among federal PHRs and PHR components, e.g., among VA, DoD, CMS.
    • Aiding efforts for a core level of interoperability between EHRs and PHRs, such as through a standard minimum data set.
    • Examining privacy laws and regulations in the light of anticipated increases in PHR use.
    • Examining reimbursement policy to increase incentives for health professionals to engage consumer participation in electronic health management tools.
    • Identifying policy issues requiring a unified stance across government.
    • Exploring ways to provide patients with electronic access to their own information as a key design component of emerging RHIOs.

The purpose of these suggestions is not to be overly prescriptive but rather to raise awareness that electronic personal health records present a new opportunity and challenge to federal policy makers. The real test for PHRs is not their political appeal, their technical sophistication, or their so-far unproven success as commercial products. The real test is whether they make it easier for ordinary people to engage more actively in their own health and healthcare—with enhanced communication, improved safety, enriched knowledge and confidence, and trusted safeguards to their privacy. For example, do PHRs help people communicate with their doctors? Do they inspire better self-care? Do they help people follow their treatment regimens and preventive service recommendations? Do they help people manage multiple medications and avoid adverse interactions? Do they help caregivers coordinate the care of loved ones across multiple providers? Do they help people make sure that health professionals have convenient access to clinically relevant information about them—whether in the primary care provider's office, the pharmacy, the emergency room or the intensive care unit?

Connecting for Health research shows that the two most important constituents in health care—patients and their families and the health professionals who serve them—are largely unaware of the promise of PHRs, and many of them have significant apprehensions about the idea. There are no shortcuts to building an electronic health environment that achieves the public trust and serves the public interest. Strategic vision and coordinated tactical steps—in both public and provide sectors—are necessary to propel a widespread PHR availability that helps patients and their families play a transformative role in the U.S. health care system.

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