Oral Presentation Smart Strokes Annual Scientific Meeting 2024

Centering Lived Experience at the Heart of Stroke 2023 Conference (106787)

Simone Russell 1 , Adrian O'Malley 2 , Seana Gall 3 , Elizabeth Lynch 4 , Brenda Booth 2 , Saran Chamberlain 4 , Jude Czerenkowski 1 , Elisha Deegan 1 5 , Kelvin Hill 1 2 , Eleanor Horton 1 , Michelle Adamson 1 , Karly Zacharia 2 6
  1. Stroke Foundation, Melbourne, VIC, Australia
  2. The Centre of Research Excellence to Accelerate Stroke Trial Innovation and Translation, Westmead, NSW, Australia
  3. Menzies Institute for Medical Research, Hobart, TAS, Australia
  4. Flinders University, Bedford Park, SA, Australia
  5. Western Sydney University, Penrith, NSW, Australia
  6. University of Newcastle, Callaghan, NSW, Australia

Introduction:

In a pilot co-design project, lived experience was integrated into the joint Australian & New Zealand Stroke Organisation and Smart Strokes conference, Stroke 2023, in Melbourne. Our aim is to describe the participation and evaluation outcomes.

Methods: 

Stroke Foundation, with funding from Bellberry Limited, coordinated a working group of lived experience representatives (5), researchers (3) and Stroke Foundation staff (4) to co-design a one-day program centred on lived experience participation. Scholarships were provided for people with lived experience and sessions were live streamed for accessibility. Support staff provided emotional and practical assistance.

This program aimed to promote collaboration between people with lived experience and researchers/clinicians and increase knowledge and confidence in co-design principles. Evaluation included attendance rates, pre and post surveys.

Results: 

Nineteen survivors of stroke and six carers were awarded scholarships to attend (from 159 applicants), with 40 individuals joining online. Seventy-one researchers/clinicians attended the co-design workshop and 76 attended the abstract presentation sessions.

People with lived experience and researchers co-presented sessions and awarded the best co-design research presentation.

Twenty-two people with lived experience completed a pre-survey and 13 a post-survey. Fourteen researchers/clinicians completed a post-survey. Among people with lived experience, knowledge about research and co-design principles increased from 41% to 85% and confidence to do co-design increased from 54% to 92%. Researchers/clinicians reported having good knowledge of co-design principles and this helped direct their research (50% strongly agree; 43% agree; 7% neutral).

Conclusion: 

The lived experience program at Stroke 2023 was well attended. We have demonstrated conferences can incorporate lived experience which has promoted collaboration and increased confidence and knowledge of attendees.

Relevance to clinical practice or patient experience: 

Incorporating lived experience in research and healthcare activities, supported by structural measures and learning opportunities, can enhance research outcomes and their application in practice, benefiting survivors of stroke.