PPIE-Informed User-Centred Development and Early Usability Evaluation of a Digital Patient Portal to Support Stroke Survivors’ Self-Management

Abstract Stroke survivors often require ongoing support to manage their health, understand personal health information throughout recovery, and reduce the risk of recurrent stroke. Digital patient portals may support self-management, but many existing portals focus primarily on information provision and offer limited integration of longitudinal stroke-specific data, home monitoring, and patient-facing explanations of electronic health records. This study describes the design, development, and early usability evaluation of a patient and public involvement and engagement (PPIE)-informed, user-centred digital portal for stroke survivors, developed in the context of the South London Stroke Register. The portal was refined iteratively using findings from prior qualitative and PPIE work, multidisciplinary stakeholder feedback, and prototype usability testing. The resulting prototype integrates access to personalised health records, home blood pressure monitoring, stroke recurrence risk information, self-assessment tools, educational resources, and caregiver and healthcare contact management. Usability testing with eight stroke survivors indicated that the prototype was broadly acceptable, perceived as useful, and usable in a supported testing environment. This study demonstrates how user-derived evidence and multidisciplinary feedback can be translated into a functional, stroke register-linked patient portal. Future feasibility evaluation will examine real-world acceptability, implementation feasibility, and the portal’s potential contribution to post-stroke self-management in a larger and more diverse population in South London.