04/02/2026
I read through this paper and study, I find it extremely helpful and necessary research, the results support the significance of a lived experience to the treatment room.
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—From Glenda Bishop, Advocate & Research Fellow for Melbourne Population Global Health:
“ Disability research must include the voices of disabled people. It makes the research more relevant and, most importantly, ensures that research is about what people with disability consider to be important.
But for a long time, academics have been used to being seen as the experts and so have controlled the research narrative. Yes, academics are highly trained in technical research methods, so they have a crucial role. But lived experience is also a form of expertise that needs to be valued and built into the research process.
When we wanted to bring lived experience into our quantitative projects using large datasets, we had no idea where to start and couldn't find published guidance on how to do it. So we had to figure it out along the way. It required being open to new ideas, listening to feedback, and above all prioritising lived experience. It challenged how we worked and required new processes, but the end result was well worth it and we learned so much.
So we published a case study of our approach to help others. Essentially, this is the 'guidebook' we wished existed before we started. Hopefully it will help other researchers to bridge the gap and bring lived experience into their quantitiative projects.
LINK TO FULL ARTICLE: https://lnkd.in/gpdhNuur
Zoe Aitken Rosie Bogumil Stefanie Dimov Lu Ye Anne Kavanagh “
