Personal health records (PHRs) are consumer-centric tools that can strengthen consumers' ability to actively manage their own health and health care [1
]. Although the capabilities of PHRs vary significantly in the current marketplace, they typically include provisions to capture information about an individual's diagnoses, medications, allergies, lab test results, immunization records, and other personal health information. Many PHRs also provide linkages to convenience tools (e.g., requesting appointments, requesting prescription renewals, asking billing questions) and communication tools to assist the patient in connecting with various health care professionals (e.g., physicians, nurses, pharmacists [2
The concept of a PHR is not new [6
]. What we now refer to as personal health records (PHRs)
arose from low-technology solutions that individuals and families have used for many decades because they needed one place to record and access their complete medical history. Paper-based documents including clinical notes accumulated from various care providers, laboratory reports, and health histories are often compiled by health care consumers in envelopes, loose-leaf binders or shoe boxes. Generations of parents have used baby books to collect basic information on post-natal care, child development, medical consultations, and immunizations. Health information wallet cards are used by consumers to carry emergency medical contacts, blood type, and allergies. MedicAlert™ bracelets have become one of the most widespread ways to communicate basic health data to health professionals who might become involved with the patient needing emergency care.
Basic electronic personal health records emerged as people began collecting personal health information and entering it into computer-based, word processing templates or spreadsheet applications. These records are initiated and maintained by individuals, often to help them manage a chronic illness; they can include lifelong personal health information and can be used with or without the participation of health care providers.
As mass storage devices such as CD ROMs, smart cards, or USB flash drives became readily available they were utilized for maintaining personal health information. Early web-based PHRs include online emergency medical records that made manually-entered diagnoses, medications, and allergy information available to emergency room clinicians [7
In today's parlance, a PHR typically refers to a computer-based record – either a standalone product (e.g., accessible on the Internet or on a USB drive) or one that is integrated with the provider's electronic health record (EHR). While the uptake of standalone PHRs has been slow, a growing number of patients actively use integrated PHRs [8
Today, PHRs command attention on the national and international health policy landscape [9
]. Recognizing that consumer engagement in health promotion and disease management is critical to quality improvement and health care cost containment strategies, [11
] PHRs have been positioned as a tool to empower consumers to play a larger and more active role in wellness and self-care [12
]. Health care leaders recognize that PHRs can integrate consumer and provider access to health information across the care continuum, including the home. Lessons learned from recent history (e.g., SARS, Hurricane Katrina) highlight the importance of portable personal health information in response and recovery efforts, the value of computer-based health records in the health care system, and the opportunity cost from the absence of these technologies.
In September 2006, the Kaiser Permanente Institute for Health Policy (Kaiser), the American Medical Informatics Association (AMIA), the Robert Wood Johnson Foundation (RWJF) and the Agency for Healthcare Research and Quality (AHRQ) convened a two-day invitational roundtable entitled "Personal Health Records and Electronic Health Records: Navigating the Intersection" with support from the Kaiser Permanente Foundation and the Robert Wood Johnson Foundation. The roundtable had three goals:
Identify the transformative potential of integrated PHRs.
Identify barriers to realizing this potential.
Identify a framework for action to move integrated PHRs closer to the health care mainstream.
This paper highlights and builds on the issues and insights shared in the roundtable discussion. Time constraints did not allow roundtable participants to reach consensus on specific recommendations. Thus, the conclusions in this paper reflect the views of the authors only and do not necessarily represent the collective thinking of roundtable participants. These conclusions are offered as a contribution to the dialogue that is deepening our understanding of the transformative potential that can be realized when PHRs integrate with other health information systems and communication technologies.
Since the roundtable in September 2006, a range of PHR initiatives has advanced in planning and implementation; several of these are described later in this paper. Nevertheless, PHRs are still largely infant technologies and further dialogue, informed by research on pivotal issues, is needed to achieve steady progress towards integrated PHRs in this decade and the next.