Working together effectively in research: Co-design and evaluation of capacity-building modules for researchers and people with lived experience of stroke

OBJECTIVES: To co-design, co-produce and evaluate resources to build the capacity of stroke researchers and people with lived experience of stroke to work together effectively on research projects. METHODS: Following an interactive workshop, a team of health professional researchers, people with lived experience of stroke, and an education specialist from Stroke Foundation (Australia) convened to co-design and co-produce two learning modules. Mixed methods were used to evaluate the modules. Researchers were invited to complete a survey about their capacity, motivation and intended behaviour before and after accessing the module. Researchers and people with lived experience who accessed the modules were invited to participate in interviews. Survey data were analysed descriptively and pre- and post-module responses were compared using t-tests. Interview data were analysed using qualitative content analysis by three researchers and one survivor of stroke. RESULTS: The modules have been widely accessed (researcher module n = 1115 users from 16 countries, lived experience module n = 119 users on 20th May 2025). Forty-one researchers completed surveys. Twelve researchers (n = 9, 75 % women; n = 9, 75 % from Australia) and 11 people with lived experience of stroke (n = 6, 55 % women; n = 11, 100 % from Australia) participated in interviews. Most participants had previous experience of collaborative research. Despite this, participants from both cohorts described a better understanding of roles and types of involvement after completing the modules. Researchers reported significant increases in their likelihood of involving lived experience contributors in research processes after completing the module, compared to responses pre-module. CONCLUSION: Two learning modules co-designed and co-produced by health professional researchers, people with lived experience of stroke, and Stroke Foundation representatives led to improvements in knowledge and confidence for stroke researchers and those with lived experience of stroke to engage in collaborative research. Modules are freely available and compulsory for all researchers submitting Stroke Foundation grant applications.