Development of a preliminary use case for personal health records in spinal cord injury health information self-management

Background: Lack of complete health information impedes delivery of excellent care. Information fragmentation presents an exceptional risk to vulnerable populations such as persons with spinal cord injury (SCI). In addition to permanent physical disability, persons with SCI experience multiple, complex, chronic, medical conditions after injury. The health records of persons with SCI are typically dispersed across numerous medical specialty, emergency services, and acute care providers who do not share information. The personal health record (PHR) is a technology designed to empower individuals to take control of their own health information: aggregate it from multiple providers, verify its accuracy, use it for self-management, and share it with others. PHRs may be particularly relevant to the needs of people with SCI for health information coordination. Objective: To develop a preliminary use case for PHRs in SCI health information self-management. Methods: Case Study. Using SCI self-management guidelines, investigators worked with an individual with tetraplegia to identify relevant health information types and contexts of use. Information types included data from interactions with health providers as well as patient-generated data (PGD) from home medical devices and free-text observations of daily living (ODL). Subsequently, a PHR was developed using a standards-compliant, freely available PHR platform and subject to structured review with the participant. Results: Provider-managed data was administratively difficult to procure. Most providers had not adopted continuity of care records/documents. Drivers interfacing home health devices to the PHR were unreliable. Medication-tracking was highly successful. Voice-to-text technology worked well with the PHR platform. Conclusions: Procuring provider-managed data was the key barrier to PHR utility. As the provider community increasingly adopts certified medical record systems, this problem will decrease. Accurate accounting of medications for sharing in emergency situations and the ability to track PGD/ODL constitute the principal, present affordances of PHRs for people with SCI.