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

Evolving Conceptions of Personal Health Records

This is a time of lively experimentation in which there are many models of personal health records. Two broad types of PHRs are evolving in the private and public sectors, distinguished primarily by their relationship to EHRs. One is a patient-facing extension of clinician-controlled EHRs; the other is not routinely linked to the patient's EHRs.

Large health care organizations such as Kaiser-Permanente, Intermountain Health Care and Geisinger are driving much of the momentum in PHR development by developing models in the first category. These PHRs give enrollees a view of their EHRs along with other functionalities that facilitate administrative tasks (e.g., appointments and medication refills), health and disease self-management (e.g., exercise or blood pressure records), communication with physicians, and access to health information resources. Among a sampling of larger early rollouts of PHRs of this kind, it is roughly estimated that some 15 percent of the target population in these organizations typically register to use PHRs.²⁰

Free-standing PHR products are offered by several dozen companies (e.g., Cap-Med, WebMD). In general, there is greater variety among these products, which typically are made available to consumers through a third-party sponsor such as a health plan, employer, or disease management program. By definition, the PHRs in this group do not derive from EHRs, although some are designed to link to users' EHRs through voluntary participation by their health care providers.

It is possible that these two types of PHRs will converge over time, if producers of free-standing PHR products find a sustainable path toward greater connectivity with providers. One approach would be to make PHRs that are used primarily in a free-standing mode capable of interfacing to provider EHRs that use common data standards.

No uniform understanding yet exists about what threshold a personal e-health tool must cross to be called a PHR, or about the boundary between the PHR and the many functions it enables. Another source of confusion is the lack of a clear dividing line between the EHR and the PHR. Opinions also vary as to whether the PHR consists only of the health record—an index or document—or encompasses a set of interactive functions and activities that might be called a personal health system (a term some in the field prefer).²¹ These functions can help consumers and family caregivers manage health across a continuum that includes staying healthy, managing illness and handling transitions such as the end of life. This discussion paper uses the term "personal health record" to connote both the record and health management functions.

Connecting for Health's description of an "ideal PHR" provided a starting point for discussion about this evolving technology. It identified the following "key attributes": consumer/patient control; accessibility from any place, at any time; privacy and security; and transparency. In addition, it described three information attributes as important but "elusive" or achievable only for a few patients in the near term: information across a lifetime, from all health care providers, and easily exchanged²². Today's PHRs show considerable variety with respect to these seven attributes, and few if any models provide all of them. In a 2004 report, Connecting for Health discusses variations related to where and how people "touch" their PHRs (the medium), how information gets into the PHR (the data), and what people can do with their PHRs (the functions)²³. The PHR Working Group chose not to recommend a single PHR approach or set of attributes, but rather to stress four recommendations to ensure that the diverse strategies evolve in common ways. The report recommends "common standards for data coding and exchange; correctly identifying each person; ensuring private and secure information storage and transfer; and ...maintaining the trust and confidence of the American public."²⁴

Opinions and practice also vary with respect to interoperability. While there is no question that many forms of interoperability are critical in the long run, people hold differing views about whether interoperability is a necessary precondition for moving ahead meaningfully with PHRs, and also about what in particular needs to be interoperable. Data in the PHR come primarily from consumers themselves and (at least for professionally-sourced PHRs) from their clinicians or industry sources such as payers and pharmacies. Although Connecting for Health's "ideal PHR" encompasses clinical data from all providers, across a person's lifetime, today's reality falls considerably short of this ideal. To make matters more complicated, many data sources besides EHRs are being considered, including claims data from payers and prescription data from pharmacies or pharmacy benefit managers. In the absence of a common framework for exchange of patient data into PHRs, each data source represents interoperability challenges as well as significant issues about privacy and business models.

A new HL7 PHR Workgroup is working on PHR definitions and PHR-EHR interoperability issues, and the NCVHS NHII Workgroup may also make a contribution in this area.

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