Overview: Personal Health Records – Current Landscape and Future Visions

Now, more than ever before, people need to be actively engaged in their health and health care and, consequently, in the management of complex health data. This active involvement, fueled by reliable information, often helps patients to more effectively manage their care and improve their quality of life and health outcomes. Patients’ engagement is best supported when information needed to make health decisions is available at the point of need—at home, at work or when consulting with health professionals.

Today, a patient’s medical information is likely scattered within records stored by different providers or institutions, which are often located in various cities or states. Patients’ efforts to compile comprehensive personal health and health care histories, and incorporate that data into the management of their care, can be challenged not only by distance but by the fact that many providers’ systems can’t easily or securely share medical records.

However, recent progress toward overcoming challenges to exchanging patients’ medical record information among different institutions has helped spur the development of “personal health records,” or PHRs, a variety of products and services that offer patients electronic access to their medical records and other relevant health information. PHRs have the ability to empower consumers, making them more effective managers of their own health care. They can help patients maintain their own complete, updated and easily accessible health data, which they can share with health care providers, family members and other caregivers as they feel appropriate.

Examples of current PHRs include institution-specific, Web-based portals that allow patients to examine the clinical or insurance claims records generated in the course of care; data storage solutions that enable people to upload and track personal health observations; and a full range of portable devices, such as a ‘health record on a memory stick’ and home-based monitors that permit patients to record and transport personal observations and clinical information from provider to provider.

These first-generation PHR approaches represent significant progress in using health IT to empower consumers, but they also present several key limitations. Generally, current PHR offerings provide people with access to health care records stored at health care institutions or to freestanding collections of personal health observations. Those that are derived from institutional records generally become inaccessible to patients when they change providers, and those that are freestanding rarely integrate effectively with institutional records. Because many of the current offerings are proprietary in nature, few opportunities exist to build on or customize them to meet the highly diverse needs of different individuals and families.

If PHR products and services are to realize their potential to help people lead healthy lives and become engaged participants in their care, they must evolve in ways that maximize opportunities for innovation in meeting the varied needs of a population that has increasingly diverse health needs and goals. Ideally, PHR systems also should be responsive to patients’ different levels of self-efficacy, health literacy, familial supports, technological fluency and other factors. For any individual, a personal health record in the years to come might encompass the medical records that result from care delivered by multiple health care providers, observations such as weight or glucose readings that a person records directly, and data collected passively in the home and/or work environment by sensors and other biomonitors.

Indeed, the power of a personal health record lies in its potential to be coupled with alerts, reminders and other decision-support tools that help people take action to improve their health or manage their conditions. From this perspective, the personal health record can be seen as part of a broader personal health record system. Health care and technology pioneers are beginning to develop solutions that harness the power of PHRs to create consumer-friendly tools people can use in their daily life to stay healthy and better manage illness. To advance this vision, Project HealthDesign grantees will engage in creative, rigorous design efforts that can enhance the utility and flexibility of personal health records, making them a critical tool to improve the health and health care of all Americans.