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

III. Interview Themes: Opportunities for Federal Contributions

This section steps back from individual agency pursuits and perspectives to summarize the interviewees' comments on the most important potential federal contributions to the development and deployment of PHRs. They fall into four areas. Many people noted the importance of having a guiding vision of population health and health care reform to inform policy and operational decisions about PHRs. That is where our discussion of federal contributions begins, because it provides the necessary frame of reference for the other potential contributions.

Visioning and strategic leadership
Interviewees both inside and outside the federal government observed that PHRs can give consumers an unprecedented opportunity to control their health experience, and as such they may be a platform for radically reforming the health care system and promoting population health. These individuals pointed out that policy makers' decisions about federal PHR activities should therefore be guided by a clear sense of the kind of health care system they wish to help bring into being, and the steps for getting there.


Leading and Facilitating Standards-based Approaches
Facilitating standards-based approaches emerged clearly as our interviewees' top priority for federal action. Standards are essential for data exchange among PHRs and EHRs, for maximum benefit to consumers and the health care system. Many types of standards were mentioned, including clinical vocabulary, information exchange and certification across the domains of clinical practice, research and consumer participation. (For example, it was noted that no standard yet exists for patient-sourced health information to be shared electronically with clinicians.)

Within government, some interviewees expect the adoption of federal health information interoperability standards developed through the Consolidated Health Informatics (CHI) Initiative to create a tipping point in industry practices. One pointed out that implementing these new standards is part of a larger process of "getting the federal house in order" and one of the ways in which government can contribute to standards-based approaches. In that regard, private sector interviewees hailed the HHS commitments to LOINC, SNOMED and other standards as a significant step toward standardization. Also, some federal interviewees predict that the Federal Health Architecture Initiative, a "multi-departmental business and technical architecture" that HHS, VA and DoD are developing together, will help lay the path to interoperability among government information systems and with industry systems12 .

Because EHRs are the leading edge—and, some argue, a precursor activity—for much of PHR development, several interviewees noted the importance of doing the work on EHRs in a way that creates systems that lend themselves to PHRs. In addition, one stressed the value of mapping PHR standards and architecture to all three dimensions of the national health information infrastructure as envisioned by NCVHS—population health, clinical practice and consumer self-care13 .


Enforcing laws and creating the right regulatory environment
Interviewees' comments on legal and regulatory factors highlight the challenges of creating the right regulatory environment for PHRs. Besides observing that regulations are sometimes needed to bring about necessary changes, they also point out that in some areas the removal of inappropriate regulatory obstacles is a precondition for progress on PHRs. In its capacity as an HHS advisory committee, the NCVHS Subcommittee on Privacy and Confidentiality is examining privacy, public confidence and regulatory issues related to the evolving uses of PHRs.


Supporting Experimentation and Facilitating the Evolution of PHRs
The above descriptions show that federal agencies are moving into many forms of PHR-related service and actively considering others. For example, they are becoming providers of PHRs as either creators or purchasers of third-party tools; they collect individualized data that can populate PHRs; they produce information content that can be disseminated via PHRs; and they produce a host of supplementary tools that can be part of personal health management systems.

As it pursues these and other activities, the federal government can facilitate the evolution of PHRs by conducting and supporting research and demonstrations, educating the user base, providing incentives for participants, and enhancing privacy and security. For example, our interviewees point out that DoD and VA are in a position to "show the way" by sharing what they learn in their large PHR programs. The diversity of their constituents and the scale of their operations may make these agencies' experience a source of useful lessons for others in the field. Some observers suggest that the federal government could play a complementary role in preparing the consumer user base for PHR and EHR use by providing educational gateways that focus on prevention and self-care information.

Many critical areas of research on PHRs are unlikely to be explored without federal support—for example, comparing alternative models, determining which functions and types of information are most useful for consumers, tracking patterns of use, monitoring health impacts, and identifying the returns on investments.

Finally, the federal government has a key role to play in creating the atmosphere of public trust that is a precondition for the widespread adoption of PHRs. Among other things, this involves advancing security protections through regulations and providing governmental support for best practices in these areas. (It should be noted, of course, that best practices are not well-defined in this nascent technology.) The challenges around protecting privacy and building public trust are discussed further below.

[12] http://www.hhs.gov/fedhealtharch/index.html

[13] See note 8 above.

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