The Personal Health Record (PHR) has been steadily gaining the interest of all stakeholders in the healthcare industry since the late 1990s. The abundance of health information collected and maintained on every individual from birth to death has grown exponentially since the inception of medical records in the early 1900s. The volume of personal health information (PHI) and the fragmented nature of where and how health records are maintained for each individual in our society make access to the right information at the right time and right place a critical issue in healthcare safety, quality, efficiency and patient satisfaction. The purpose of this Web page is to keep all stakeholders informed about the progress being made to solve the multitude of challenges to widespread adoption to a standardized form of PHRs.

We invite all who visit this site to contact AHIMA with news of progress on PHI and PHR development and to join the debate on how the challenges of PHI and PHRs can be best met. Share your successes and lessons learned.

There are numerous areas that affect or are affected by PHRs:

• New and evolving technologies, including interoperability of PHRs with Next Generation 9-1-1, Public Safety Emergency Response Systems, and Automatic Collision Notification Systems (e.g. General Motors OnStar, Mercedes-Benz TeleAid, BMW Assist)
• Health banking activities
• Interoperability with electronic health records (EHRs)
• State and federal legislation related to EHRs and PHRs

Definition and Description

In 2004, the AHIMA e-HIM Workgroup developed the following definition of a Personal Health Record:

• Personal Health Record-A Definition
  The personal health record (PHR) is an electronic, lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, which comes from healthcare providers and the individual. The PHR is maintained in a secure and private environment, with the individual determining rights of access. The PHR does not replace the legal record of any provider.

The definition of the PHR is still evolving within the healthcare community. It is influenced by marketplace demands as well as the economic, technological and political realities of the U.S. healthcare industry. This Web site will update the definition as greater consensus across stakeholders is achieved.

Other definitions:

• HIMSS Definition of PHR

Industry and Standards Activities

• The Personal Health Records Work Group (PHR WG) within HL7 has developed a Personal Health Record System Functional Model Draft Standard for Trial Use (PHR-S FM DSTU).
  The PHR-S FM will soon be published on the HL7 Functional Profile Registry  website hosted by the National Institute of Standards and Technology (NIST). Profiles derived from the PHR-S FM, such as the Health Authority-Based PHR, can also be found on the Functional Profile Registry website. A payor-based PHR profile has also been developed.

• The Certification Commission for Healthcare Information Technology (CCHIT)
  CCHIT has created a Personal Health Records Work Group that is developing certification criteria and test scripts for certifying PHR systems.

• The Health Information Technology Standards Panel (HITSP) 
  HITSP has created interoperability specifications (IS) for consumer empowerment. These interoperability specifications are based on foundational components, such as access, use, and control, and consent directives.

• The International Organization for Standardization Technical Committee 215-Health Informatics (ISO TC 215)
  ISO is creating a standard definition for personal health records. The report is available for purchase.

• US Department of Transportation (USDOT) Research and Development Project
  PHRs may have a important role in emergency situations, particularly those related to transportation and motor vehicles, as seen in the Next Generation 9-1-1 Initiative of the US Department of Transportation (USDOT) Research and Development Project

Resources & Links

• MyPHR
• John Walsh on PHRs - A Public Service Announcement
• CCHIT
• Google Health
• Microsoft HealthVault
• Medicare PHR
• HITSP Consumer Information
• Health Record Banking Alliance
• Nationa Family Caregivers Alliance
•  Patients' Perceived Value of Using a PHR By Ritu Agarwal, Professor and Robert H. Smith Dean's Chair of Information Systems,Executive Director, Center for Health Information and Decision Systems (CHIDS)
• Personal Health Record Use by Patients as Perceived by Ambulatory Care Physicians in Nebraska and South Dakota: A Cross-Sectional Study
• Patient Health Information Management: Searching for the Right Model
• The Personal Health Record
• Current State of PHRs
• Defining the Personal Health Information Management Role
• PHRs and Physician Practices