Co-Designing a Digital Stroke Prevention Platform: Leveraging Lived Experience and Expert Advice

The majority of strokes are preventable through effective risk factor management. Existing primary prevention strategies have insufficient reach and effectiveness. Digital health technologies offer the potential to overcome some of these barriers. The aim of this study was to co-design the 'Love Your Brain' digital platform, including an online education program (Massive Open Online Course, MOOC) and text messaging system, for community stroke prevention education and management.

Using snowballing methods, expressions of interest were sought from community members and health knowledge experts (e.g., health professionals and researchers) from across Australia. Participants were purposively selected for diversity in age, sex, location, education (community) and profession (health knowledge experts). A series of eight focus groups were planned. From May 2023 to August 2023, seven online focus groups were undertaken separately with each cohort, to explore perceptions related to the core functions, content and design features. Their insights were used to develop the digital platform. Following a testing period, a final focus group was held with each cohort (March 2024) to evaluate the digital platform further. Focus groups were recorded with participant consent. Recordings and transcripts, live chats and interactive polls from the focus groups were analysed using inductive and deductive thematic approaches, with themes mapped to the Framework for the Design and Evaluation of MOOCs.

Twelve community members and ten health knowledge experts participated in at least one of the eight focus groups, with overall 86% attending five or more. Although some diversity existed in group opinions about the delivery and content, all participants emphasised the importance of using simple, easy-to-understand language and layout throughout, with the inclusion of a variety of statistics, personal stories and expert information. Focusing on emotional motivation was perceived as essential for engagement with the digital platform. Furthermore, being able to personalise the content and provide options for people to explore more advanced information (via external resources and a project-specific website with trusted links) was considered advantageous.

Co-design with community and knowledge expert cohorts informed and enriched the development of the Love Your Brain digital platform. The co-designed platform is currently being piloted in a feasibility trial.

People with lived experience of stroke, along with family/caregivers and members of the public, actively participated in the co-design focus groups. The Love Your Brain Management Committee comprises lived experience stroke survivors and carers who worked in partnership with researchers and clinicians to provide oversight and guidance to the development and implementation of all stages of the study, including the preparation of this manuscript.