Background: A personal health record (PHR) is a collection of electronic health data drawn from multiple sources but managed by the patient. The PHR is a strategy that enables patients to be proactive in the coordination of their care. Objective: The purpose of this clinical improvement study was to discover what worked, what did not work, and what could be improved in the initial implementation of MyPHR, a PHR tailored to patients with spinal cord injury (SCI), to make it a useful tool for care coordination and health self-management. Methods: Five individuals with chronic (>1 year) SCI carried out trial use of MyPHR. Twelve hours of interactions, including screen navigation and think-aloud reflection, were recorded and analyzed using formative research, a qualitative method and type of case study research. Results: Two key themes emerged to guide the implementation of PHR technology: selectivity in the identification of information for the patient to track, and continual support and communication with the clinical team. Conclusion: Given the volume of electronic data available to patients with SCI, the data identified to import, manage, and keep current in a PHR have to be thoughtfully selected to make sure the patient is convinced of the worth of this data record and is willing to invest the time and effort it will take to maintain it. A PHR should be implemented with a deliberate focus on its function as a tool that patients and providers use together to expand communication as they work toward their common goal of optimizing health after SCI.
Keywords: care coordination; case study; formative research; health information technology; personal health records; self-management; spinal cord injury; use cases.