Overview
The growing importance of the participation of individuals in their own care and wellness activities is the impetus behind the vision for personal health records. By enabling and encouraging individuals to become more engaged in their health and care, and by providing the means to document, track and evaluate their health conditions, a PHR can lead to more informed health care decisions, improved personal health status, and ultimately, reduced cost and improved quality of health care.
The current and largely rudimentary manifestations of what some call PHRs in electronic form begin to address personal health management objectives by providing some information on health care services and allowing individuals to enter information. Yet, PHRs have the potential to be a robust, better-assembled and more organized source of both clinical and wellness information for an improved level of clinical, health and wellness decisions. The anticipated result is a well-rounded, complete picture of an individual’s health that extends beyond the care provided by the delivery system. Given the longitudinal nature of a PHR, the time period for this information could conceivably be as long as “cradle to grave.”
Though a portion of the information in a PHR may originate from health care providers, health insurers or third party administrators, the control of information transfers to the individual when it becomes part of the PHR. By contrast, current internet-based portals of information on an individual that are hosted and maintained by a provider or payer organization, without transferring access and control and use of the information to the individual, are not considered PHRs based on this definition.
Personal Health Record (PHR)
An electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared, and controlled by the individual.
Understanding a PHR
The most salient feature of the PHR, and the one that distinguishes it from the EMR and EHR, is that the information it contains is under the control of the individual. The concise definition above names the individual as the source of control, but that leaves room for others acting in the individual’s interest—their agent or agents—to have control over access to the PHR. An agent may be expressly designated by the individual but not in all cases; examples of an agent acting for an individual include parents acting for children, or, in the later stages of life, children acting for parents.
Exercising control. The individual is distinctively the guardian of information stored or accessible within a PHR. Similar to the role of a librarian, a person managing a PHR decides what volumes of information to include, how they are maintained and ordered, and who can read them or “check them out.” Standards and policy will need to determine if and how individuals can delete or modify information in a PHR that originated from an EHR and how these modifications are communicated to other providers with whom the data in the PHR are shared.
Portability. Having control also means that an individual’s PHR can exist independently of the entity that sponsors it—the PHR is portable. This requirement for portability excludes models in which sponsors such as health insurers or health care providers give individuals access to health-related information that is dependent on the individual remaining with that sponsor.
Inputs into the store of information.
To reiterate, the long-term goal of a PHR is to be a lifelong resource of pertinent health information for an individual. Thus it should have both the depth and breadth of information to enable individuals to become more engaged in their own healthcare as they move from being passive recipients to active participants in their personal health management. The health information in a PHR can be drawn from a broad range of possible sources. Significant sources may include, but are not limited to:
- Health care providers—Including hospitals, skilled nursing homes, long term care, and other facilities; pharmacies, lab, and diagnostic facilities reporting test results.
- Health care clinicians—Including physicians, nurses, behavioral health professionals, registered dieticians, chiropractors, and other licensed or certified care providers.
- Medical devices—Instruments, machines and implanted devices monitoring clinical indices, for immediate use as well as for historical purposes.
- Wellness promoters—Entities supplying services or information to generate and maintain good health, such as fitness centers, rehabilitation experts, and complementary/ alternative medicine practitioners.
- Individuals—Self-generated information for personal management or information for care providers, including information about allergies, prescribed medications, eating habits, exercise objectives, the progression of an illness or recovery from it, and preferences regarding care in various circumstances.
- Health insurers—Information arising from claims for insurance payments, disease management programs recommending certain actions and collecting results, updated information on drugs in a formulary, and other coverage policies specific to an individual.
- Public health—Government health departments, disease surveillance and immunization programs, school-based care providers and social workers, and nongovernmental organizations engaged in health and wellness.
- Research institutions—Information about opportunities to engage in clinical trials and studies, and recently published results of interest to the individual.
The sum of these and other inputs is a well-rounded picture comprising clinical information, administrative information, and wellness information for individuals to employ and impart to others at their discretion.