SLEEP HEALTH (symposium session): What matters most to patients: importance of co-designing and conducting research with people from lived experience and examples from sleep health research
Tracks
Track 3
| Friday, November 13, 2026 |
| 3:15 PM - 4:45 PM |
Details
Understanding what matters most to patients is essential for meaningful and impactful research. This symposium places lived experience at the forefront, demonstrating how genuine partnership with people who have sleep disorders or at risk of developing a sleep disorder can transform research priorities, methods, and outcomes. The session will include a presentation from a lived experience representative, offering firsthand insight into why co-design matters and how it can impact change. Three speakers will then present on co-designed research studies, showing how working collaboratively with those who live with sleep disorders can result in more relevant research questions, more valuable insight, and outcomes that truly reflect patient needs and wants. Attendees will gain practical guidance on how to establish a consumer advisory group, build respectful, authentic relationships with people with lived experience, and learn how conduct co-design research that aligns with what matters most to the people it is intended to support. This session is supported by the Sleep Health Foundation Lived Experience Advisory Partners.
Speaker
Ms Karen Cowling
Lived Experience
LEAP Representative
What matters most to patients: Reflections from Sleep Health Foundation Lived Experience Advisory Partners (LEAP) representatives
3:15 PM - 3:30 PMBiography
As someone with lived experience of a sleep disorder, particularly sleep apnea, I know firsthand how challenging it can be when energy levels fluctuate.
My journey to understand and manage my sleep disorder has been long and often difficult, but it has taught me persistence, self‑advocacy, and the importance of support.
Joining the LEAP provides new knowledge, resources, and a community of support. It’s also allowed me to support others who are navigating similar challenges, turning my lived experience into another's path being a little easier.
Michael Cox
LEAP Representative
What matters most to patients: Reflections from Sleep Health Foundation Lived Experience Advisory Partners (LEAP) representatives
3:15 PM - 3:30 PMBiography
Ms Nicole Grivell
Implementation Scientist/Research Associate
Flinders University
Together we achieve more: Establishing and maintaining a consumer advisory group for research into the sleep and breathing of people living with motor neurone disease
3:30 PM - 3:50 PMBiography
Dr Aaron Schokman
Research Fellow
The University Of Sydney
Nothing about us without us: Embedding lived experience in narcolepsy research through co-production
3:50 PM - 4:10 PMBiography
Dr Eleni Kavaliotis
Research Fellow
Monash University
From Lived Experience to digital intervention: Co-designing sleep support in dementia care
4:10 PM - 4:30 PMBiography
Dr Jenny Haycock
Research Associate
Flinders University
Chair
Biography
Dr Charlotte Gupta
Senior Postdoctoral Research Fellow
CQUniversity
Chair
Biography
