Standalone personal health records in the United States: meeting patient desires

Personal health records (PHRs) are electronic tools for patients to maintain a comprehensive record of their health information. Despite the potential for PHRs to increase patient involvement in their overall health care and lead to shared decision-making with their health care providers, only 11 % of consumers in the United States maintain a PHR. The purpose of this study is to evaluate how standalone PHRs address the reported desires of patients. An Internet search identified nineteen web-based standalone PHRs that were available free-of-charge. A literature search was conducted to identify patient-reported desires for a PHR. A checklist was constructed with an evaluation procedure to assess the presence of functionalities within each standalone PHR that met identified patient desires. Each of the nineteen identified PHRs was then assessed using this checklist. Providing security and privacy protections for patients’ health information; having information presented in layman’s terms; and generating a printed report of health information were the only desires met by more than half of the evaluated PHRs. Only five PHRs met over half of the patient desires. Findings reveal that current standalone PHRs are designed to serve as a repository of health information, rather than as an interactive tool to help patients become more knowledgeable about and involved in their own care. There is a need for patient perspectives to be considered and integrated into the design of PHRs in order for PHRs to achieve their full potential.