Co-design of an electronic patient-reported outcome symptom monitoring system for immunotherapy toxicities

Utilising electronic patient-reported outcomes (ePRO) to monitor symptoms can improve patient outcomes. However, ePRO systems are typically not co-designed with end-users which may limit their utility and long-term sustainability. We aimed to co-design a real-time ePRO symptom monitoring system for immune checkpoint inhibitor (ICI) toxicities.

We conducted three co-design workshops at an Australian quaternary cancer centre. Participants were patients who had received/were receiving ICI or their caregivers, managing clinicians, administration staff, and electronic medical record (EMR) analysts. Workshop 1 identified preferences for an ideal ePRO system, informing the development of a prototype and generic workflow. Workshop 2 sought feedback on the prototype and workflow. Workshop 3 reviewed the updated prototype and adapted the generic workflow to create a site-specific workflow. Workshop transcripts were analysed thematically.

Twenty-seven participants were included. Themes relating to system content and functionality included the need for customisation according to anticipated ICI toxicities; maximising patient accessibility, comprehension, and usability; providing ICI-specific self-management advice; and maximising clinician interpretability and usability. Themes relating to the model of care included the importance of maintaining the “human element” within the ePRO system, providing 24-hour support, alignment with existing clinical workflows, and automation of symptom monitoring processes using the EMR.

Early, broad stakeholder engagement through co-design may improve the relevance, uptake, and sustainability of ePRO systems. Future work will involve usability and acceptance testing of the prototype, followed by implementation into routine care.