Consumers have long maintained paper records of health information, such as their medical history or a list of prescribed medications. Yet few have the time, ability, or motivation to keep a paper record up-to-date. It is generally believed that digitalizing consumers’ health records will help to maintain accurate information over time, and that this information will lead to improved health care access, use of services and health outcomes. In recent years, technological advances have increased the options available for maintaining personal records. Consumers have also become more comfortable in using technology. Thus, today’s PHRs are often computer-based. In the future, cell phones, personal digital assistants (PDAs), iPods, and other devices with Internet access may also offer the functionality for hosting full or partial PHRs.
The National Committee on Vital and Health Statistics (NCVHS) concluded that no uniform definition of the term PHR existed in industry or government as of 2006. The committee suggested that PHRs should be characterized by their attributes, including the scope or nature of their contents; source(s) of that information; features and functions offered; the custodian of the record; the storage location of the content; technical approaches to security, and the party designated to authorize access to the information.
While a universal definition of what constitutes a PHR has not yet been adopted, leading organizations continue to work towards creating a standardized definition of PHR elements, methods, scope, desirable features, functions and infrastructural elements. Exhibit 2 below presents two alternative definitions of the term PHR–from the Markle Foundation and the American Health Information Management Association (AHIMA). Although these definitions differ there are commonalities. Each definition suggests that a PHR is an electronic application, accessed and managed by consumers, through which personal health information is maintained and shared in a secure, private, and confidential environment.
ONC-NAHIT, ASTM International (a voluntary standards development organization) and International Organization for Standardization (ISO) have also developed PHR definitions. ONC-NAHIT and ASTM both define PHRs as consumer-controlled, and health records which are payer-controlled are excluded from their PHR definitions. AHIMA and ONC-NAHIT have included data inputs as components of their PHR definitions. Both organizations, along with RWJF, have agreed that the objective of a PHR includes universal availability and lifelong use for the consumer. Although most organizations define PHRs as being interoperable, ISO specifically recommends that PHRs maintain identical architecture to electronic health records (EHRs), which would simplify the often tricky process of providing interoperability between a PHR and an EHR in a particular health care system.
EXHIBIT 2 Alternate Definitions of the Term ‘PHR’
Markle Foundation Definition
An electronic application through which consumers can access, manage and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment.
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 consumer. 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.
While organizations such as AHIMA and ONC-NAHIT are working to define PHRs in terms of their use, objectives, and ownership rights, other organizations such as RWJF have defined criteria for the functional components and platforms of PHRs. In fact, the PHR industry has gone to great lengths to separate a PHR definition from the description and characteristics of functionality provided by the PHR and the different potential data sources. NCVHS proposed using the term PHR to refer to a health or medical record that includes clinical data, and the term ‘personal health record systems’ (PHR-S) to refer to multi-function tools that include PHRs among a battery of functions.
In 2005, the Health Level Seven (HL7) Personal Health Record Work Group of the HL7-EHR Technical Committee was charged with developing a PHR-system functional model and standards. This group has focused on identifying features and functions required for a PHR system to be effective. Its draft recommendations were submitted for public review, and final recommendations were due to be released at the end of March 2008. Currently HL7 has available a draft standard for trial use (DSTU).