Oral Presentation Australian and New Zealand Stroke Organisation Conference 2026

Building research readiness: co‑designing a flexible pathway for lived experience involvement in stroke research (139712)

Brenda Booth 1 , Adrian O'Malley 1 , Antonia Arfaras 1 , Kim Beesley 1 , Matthew Berryman 1 2 , Saran Chamberlain 1 3 , Elisha Deegan 1 , Alison Douglas 1 , Clive Kempson 1 , Frederick Reader 1 , Sophie Weaver 4 , Simone Russell 4 , Coralie English 5
  1. Lived Experience Advisory Group, Centre of Research Excellence to Accelerate Innovation and Translation in Stroke Trials, Sydney, NSW, Australia
  2. La Trobe University, Bundoora, Australia
  3. Flinders University, Adelaide, Australia
  4. Stroke Foundation, Melbourne, VIC, Australia
  5. University of Newcastle, Newcastle, Australia

Background:
People with lived experience bring critical insights to stroke research, yet many are unsure where to start, how to become involved, or unaware of the value they bring. Establishing supportive and psychologically safe foundations, alongside training and skill development, can help prevent negative experiences that may impact involvement and the success of research collaboration.

Aims:
This project aimed to explore what it means to be ‘research ready’ and to co-design a pathway that supports lived experience involvement and partnership in research.

Methods:
In-person and online co-design workshops were conducted with people with lived experience of stroke and stroke researchers. Phase 1 (n= 7 lived experience, n=6 researchers) explored perceptions of research readiness, barriers and enablers to involvement, and support needs across levels of participation and experience. Phase 2 (n=7 lived experience, n=1 researcher) addressed prioritisation and planning for implementation.

Results:
Participants emphasised understanding roles, psychological safety, and the ability to self-advocate around accessibility, workload and support needs. Readiness was described as individual and non-linear, shaped by recovery stage and emotional capacity, and supported by confidence, mentoring, community and guidance. An ideal pathway emphasised starting small, learning through doing and gradual progression through levels of involvement, which informed development of the Research Ready Pathway.

Conclusion:
The Research Ready Pathway provides a practical, implementation-focused framework to strengthen the uptake, quality and sustainability of lived experience involvement in stroke research. The pathway offers flexible entry points, staged participation options and varied learning formats, with potential transferability to other research and health contexts.