Abstract
Innovations in electronic health record (EHR) systems invite new patient and family engagement methods and create opportunities to reduce healthcare disparities. However, many patients and their identified support persons (ie, proxies) are unsure how to interface with the technology. This phenomenological qualitative study served as a pilot study to investigate the patient, proxy, and provider lived experiences utilizing patient-facing EHR portals. Individual interviews and focus groups were utilized to collect qualitative data from 21 patient, proxy, and healthcare provider participants across 3 time points. Colaizzi's phenomenological data analysis method was utilized to interpret the data. Four themes emerged highlighting critical benefits and obstacles for patients and support persons interfacing with a patient portal: (a) agency, (b) connection, (c) support, and (d) technology literacy. Results help highlight strategies and dispel myths essential to advancing patient and family engagement using EHR patient portal systems. The study's outcomes reflect recommendations for onboarding proxies and improving patient/family engagement and family-centered care models.
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