P9

Appendix A: Definitions of PHRs

"Personal health record" (PHR) is a widely used but loosely defined term for a variety of emerging technologies that enable people to manage their health information and health care transactions electronically. The following brief discussion outlines key characteristics of PHRs.

PHRs Are Distinct from EHRs

It is important to distinguish PHRs from electronic health records (EHRs). EHRs are electronic systems used by health care providers to record and manage information about their patients. EHRs are designed to replace the paper “patient chart” that clinicians have a legal and professional obligation to maintain throughout the course of each patient’s care and for many years afterward. In contrast, PHRs are optional tools for consumers, who do not have similar legal and professional obligations for health record-keeping.

Attributes of a PHR

The Markle Connecting for Health Personal Health Working Group described the PHR as an electronic tool that "...enables individuals or their authorized representatives to control personal health information, supports them in managing their health and well-being, and enhances their interactions with health care professionals."¹

Markle Connecting for Health has put forward the following as seven attributes of an ideal PHR:

1. Each person controls his or her own PHR.
2. PHRs contain information from one’s entire lifetime.
3. PHRs contain information from all health care providers.
4. PHRs are accessible from any place at any time.
5. PHRs are private and secure.
6. PHRs are transparent. Individuals can see who entered each piece of data, where it was transferred from, and who has viewed it.
7. PHRs permit easy exchange of information across health care systems.²

The American Health Information Management Association has a similar definition: “The personal health record (PHR) is an electronic, universally available, lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, which comes from health care providers and the individual. The PHR is maintained in a secure and private environment, with the individual determining rights of access. The PHR is separate from and does not replace the legal record of any provider.”³

As noted in the Values and Principles section of this paper, few if any current PHRs provide an easy means to reach the full ideals of all seven Markle Connecting for Health attributes. Attributes three and seven are particularly difficult to achieve in today's health information technology environment.

Dimensions of PHRs

There is a heterogeneous group of applications that describe themselves as PHRs. Below we describe a set of six dimensions to classify the many PHRs on the market today. As a visual aid, we illustrate these dimensions as sides of a cube. Each side of the cube has a taxonomy to help understand the diversity of offerings.

Many PHRs are intended to serve the general public. Others are offered to selected populations, such as employees of a certain company or members of a health plan. The size of these population segments ranges from small (e.g., parents of children with hydrocephalus) to very large (e.g., people who have diabetes).

Perhaps the most recognizable characteristic of a PHR system is its relationship to other health information systems. A PHR may be integrated (or sometimes said to be "tethered") to an EHR. This type of PHR is often called a patient portal, because the PHR provides the patient's view into an extract of the provider's EHR. Other PHRs are integrated with non-EHR systems. For instance, a PHR may have a relationship with an insurance company's claims system, a pharmacy's information system, or a health-monitoring device. The other type of PHR is called independent or “stand-alone” (i.e., not integrated with another information system, and typically reliant on patient-input data).

The third dimension relates to the source of data that PHRs capture and store. This is closely related to the type of integration with other health information systems that the PHR offers. There are three main types of PHR data: consumer-sourced, professionally sourced, and device- sourced data. Consumer-sourced data are captured, typically via manual entry, from the individual or individual’s authorized proxy. Professionally sourced data are from clinicians and other health care entities (e.g., payers, pharmacies, labs, etc.). Device-sourced data are generated via uploads of information from monitoring tools, such as blood glucometers or blood pressure cuffs. Of course, PHRs can implement any combination of these data sources.

PHRs may also be categorized based on the type of platform on which the application runs. Most PHRs are web-based. However, some PHRs may run on the user's PC or a portable device. These portable devices include USB keys, mobile phones, smart cards, and even implantable devices. PHRs may evolve to interoperate across several platforms.

PHRs may also be differentiated by the entity that sponsors the product, and there are a wide variety of such entities. Employers, large and small health care providers, insurance plans, pharmacy services, affinity groups, dot-coms, device makers, and disease management companies are among those sponsoring PHR applications.

Note: A PHR sponsor often does not directly supply a PHR product to its target population, but rather contracts with a PHR vendor for the service.

Closely related to sponsorship is the final dimension: the business model or value proposition. PHRs’ applications differ according to the value proposition that they promise their vendors and sponsors. PHR vendors generally rely on revenue from some combination of licensing fees, services or transaction fees, advertisements, and subscription fees. PHR sponsors are generally seeking to derive value from one or more of the following:

• Loyalty and marketing: For example, a health plan or integrated delivery network may offer the PHR as a means to differentiate its service from competitors and build loyalty and/or dependence among its membership.
• Process efficiency: For example, an integrated delivery network may offer a PHR with online appointment scheduling or online prescription refills to reduce the number of telephone calls from patients to its physicians.
• Messaging: For example, an employer may offer a PHR to communicate health and health benefits information to its employees, including the availability of disease management programs for people with certain conditions.
• Behavior and outcomes: For example, some PHRs may offer functionality to improve adherence to prescription regimens or exercise programs with the goals of improving behavior and outcomes.

An important note about all of these diagrams is that the categories within each dimension are not mutually exclusive. Many existing models are blended. For example, a PHR can have all three types of data sources or have several different business objectives.

More Than Merely a Repository

In its 2004 report, Connecting Americans to Their Health Care, Markle Connecting for Health emphasized the importance of integrating services into PHRs beyond the mere storage of health data.

Similarly, the National Committee on Vital and Health Statistics concluded: “The term ‘record’ in ‘personal health record’ may itself be limiting, as it suggests a singular status repository of personal data. The Committee found that a critical success factor for PHRs is the provision of software tools that help consumers and patients participate in the management of their own health conditions. A ‘personal health record system’ provides these additional software tools.”⁴

A Symposium of the American Medical Informatics Association’s College of Medical Informatics reported: “Personal health record systems are more than just static repositories for patient data; they combine data, knowledge, and software tools, which help patients to become more active participants in their own care.”⁵

At this early stage of development, we believe that it is important not to restrict innovation by defining PHRs too narrowly. Different populations of consumers are likely to embrace various types of personal health applications. Thus, health information exchange networks should be designed to support a broad diversity of personal health applications and technologies.

__________

1. The Personal Health Working Group Final Report. Markle Connecting for Health, Markle Foundation, July 2003, p 16. Access on May 19, 2006 from URL: http://www.policyarchive.org/collections/markle/index?section=5&id=15473.
2. Connecting Americans To Their Health Care. Markle Connecting for Health, Markle Foundation, July 2004, p 24. Accessed on May 17, 2006 from URL: http://www.markle.org/publications/892-connecting-americans-their-health-care-executive-summary.
3. "The Role of the Personal Health Record in the EHR." Journal of AHIMA 76, no.7 (July-August 2005): 64A-D. Accessed on May 22, 2006 from URL: http://library.ahima.org/xpedio/groups/public/documents/ahima/bok1_048517.hcsp?dDocName=bok1_048517.
4. "Personal Health Records and Personal Health Record Systems: A Report Recommendation from the National Committee on Vital and Health Statistics,” Sept. 9, 2005. Accessed on May 22, 2006 from URL: http://www.ncvhs.hhs.gov/050909lt.htm.
5. Tang P et al. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. JAMIA. Mar-Apr 2006; 13(2):121-126.