Oral Presentation Smart Strokes Annual Scientific Meeting 2025

Working Effectively with Stroke Survivors in Research (127730)

Brenda Booth 1 , Adrian O'Malley 1 , Julie Bernhardt 2 , Kate Hayward 3 , Ciara Shiggins 4 , Gillian Mason 5 , Dana Wong 6 , Elizabeth Lynch 7
  1. Lived Experience Stream, The Centre of Research Excellence to Accelerate Stroke Trial Innovation and Translation, Newcastle, NSW, Australia
  2. The Florey Institute of Neuroscience and Mental Health, Melbourne, Victoria
  3. The University of Melbourne, Parkville, VIC, Australia
  4. The University of Queensland, Brisbane, QLD, Australia
  5. The University of Newcastle, Callaghan, NSW, Australia
  6. La Trobe University, Melbourne, VIC, Australia
  7. Flinders University, Bedford Park, SA, Australia

Introduction

Involving people with lived experience in research is recognised as best practice. Insights from people with lived experience make stroke research more relevant and meaningful. This project aimed to develop practical, evidence-informed recommendations to support researchers to work effectively with stroke survivors.

Methods

A 2020 workshop by the Centre of Research Excellence to Accelerate Stroke Trial Innovation and Translation (Stroke Trials CRE) brought together researchers, clinicians and stroke survivors to explore ways to improve inclusion in stroke rehabilitation research. Presentations and group discussions identified the need for resources to guide collaboration with people with lived experience.

With funding from Stroke Trials CRE and Stroke Foundation, a co-design team of researchers, stroke survivors and clinicians developed two learning modules—one for researchers and one for stroke survivors. Workshop participants reviewed drafts and provided feedback, informing final revisions.

Results

The module Working effectively with people with lived experience to design, conduct and promote stroke research launched on Stroke Foundation's InformMe website in 2022. It includes 23 interactive slides, six videos and guidance on engagement across the research cycle.

Ten key recommendations include:

  1. Engage the right people
  2. Provide project information
  3. Clarify the survivor’s role
  4. Establish and maintain good working relationships
  5. Inclusive ways of working – in meetings
  6. Inclusive ways of working – communicating & corresponding
  7. Research liaison
  8. Peer mentorship
  9. Training requirements
  10. Offer appropriate renumeration

Completion of the module is now mandatory for researchers applying for Stroke Foundation funding.

Conclusion

Engaging people with lived experience strengthens the quality, relevance and impact of stroke research and fosters more inclusive, person-centred health care innovation.

Relevance to Clinical Practice or Patient Experience

Involving stroke survivors ensures research reflects priorities and drives inclusive, patient-centred innovation in care and policy.