Abstract

Demand is emerging for personal health records (PHRs), a patient-centric digital tool for engaging in shared decision-making and healthcare data management. This study uses a RE-AIM framework to explore rural patients and providers' perceptions prior to and following implementation of a PHR. Health care providers and their patients were recruited from early-adopter patient medical home clinics and a local patient advisory group. Focus groups were used to explore patient and provider pre-implementation perceptions of PHRs and post-implementation provider perspectives. Patients were invited through participating clinics to use the PHR. An implementation process evaluation was conducted. Multiple methods and data sources were used and included pre-/post-intervention patient surveys, provider interviews, and PHR/EHR administrative data. Both patient and provider focus groups described PHRs as providing a comprehensive health story and enhanced communication. Patients prioritized collection of health promotion data while providers endorsed health-related, clinical data. Both groups expressed the need for managing expectations and setting boundaries on PHR use. The evaluation indicated Reach: 16% of targeted patients participated and an additional 127 patients used the PHR as a tool during the COVID-19 pandemic. Effectiveness: Patient satisfaction with use was neutral, with no significant changes to quality of life, self-efficacy, or patients' activation. Adoption: 44% of eligible clinics participated, primarily those operated publicly versus privately, in smaller communities, and farther from a regional hospital. Implementation: Despite system interoperability expectations, at time of roll out, information exchange standards had not been reached. Additional implementation complications arose from the onset of the pandemic. One clinic on-boarded additional patients resulting in a rapid spike in PHR use. Maintenance: All clinics discontinued PHR within the study period, citing several key barriers to use. RE-AIM offers a valuable process evaluation framework for a comprehensive depiction of impact, and how to drive future success. Interoperability, patient agency and control, and provider training and support are critical obstacles to overcome in PHR implementation.

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