With a panel consisting of researchers with and without lived experience in the areas of stroke and persistent pain, the session covered questions including when to bring in people with lived experience and how to maximise their impact on the project. 

‘Co-design is research done with people, not on people or for people,’ said Associate Professor Elizabeth Lynch, a researcher and physiotherapist at Flinders University. 

Elizabeth noted that people with lived experience could bring different perspectives to the research, making sure it was understandable and relevant and providing expert advice. 

In many studies, co-design is now required for funding.

It also drives the research to answer questions directly relevant to the people affected. 

Saran Chamberlain, a lived experience researcher and survivor of stroke who is actively involved in research programs as a coinvestigator and as a member of several advisory groups and councils for stroke rehabilitation, talked about her own experiences in co-designed studies, where she has worked as a co-facilitator for interviews with other people with lived experience. 

‘It really helps in interviews if the participant is talking to someone who has had similar experiences,’ she said. 

Researchers Dr Carolyn Berryman MACP and Dr Rachel Toovey APAM both described how they have used co-design in their research at multiple levels, stressing the need to work collaboratively with the affected community. 

Carolyn’s research is focused on the development of a community-led model of care for early intervention for chronic pain in adolescence. 

‘These teenagers want to be listened to and they are worried that their concerns are being dismissed,’ Carolyn said. 

By involving the teens with lived experience right from the early stages of the project, she said, they have built trust with both the youth taking part in the project and their parent carers. 

‘We’re building up a community of practice that is helping us to see where the sticky points lie in this project.’ 

Rachel has been working on the CycLink program of research, which aims to get children involved in cycling through collaborative cross-sector community programs supporting participation. 

The project has involved children and their parents at different stages, from early planning to gathering data in interviews and workshops, data analysis and evaluation, the development of prototype programs and co-design of the CycLink program, which is now being trialled in a five-year implementation study. 

‘Co-design doesn’t happen overnight. 

‘This project was ten years in the making,’ Rachel said. 

Mary Wing, a peer educator and patient advocate in the persistent pain space, then talked about collaborative design in pain education delivered by physiotherapists. 

‘We need patient perspectives from the beginning of the project,’ she said. 

Wrapping it up, the researchers encouraged the audience to embrace the messiness of codesign and look for someone who has had experience in co-design to provide advice and mentoring.