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.
Mr Michael Cox
Leap Representative
Sleep Health Foundation
What matters most to patients: Reflections from Sleep Health Foundation Lived Experience Advisory Partners (LEAP) representatives
3:15 PM - 3:30 PMBiography
Getting a good night's sleep has always been a struggle for myself. Having Co-misa means I struggle to fall asleep and stay asleep, add on a 2 year old who wakes up in the middle of night makes juggling work and parenthood quite a challenge with lots of yawns and caffeine.
I am excited to be able to share my story and talk to people about taking care of their sleep and the importance of being well rested.
Dr Nicole Grivell
Implementation Scientist
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 Nicole Grivell is an implementation scientist and early career researcher who works at FHMRI Sleep Health at Flinders University and in the Breathing, Exercise, and Sleep Therapies in Neuromuscular Disease group at University of Melbourne. Her research focuses on the primary care management of sleep disorders and improving care for people with motor neurone disease. Her research interests include the implementation of new models of care, qualitative methodologies and consumer engagement in research.
Dr Aaron Schokman
Research Fellow
University of Sydney
Nothing about us without us: Embedding lived experience in narcolepsy research through co-production
3:50 PM - 4:10 PMBiography
Dr Aaron Schokman is a Research Fellow in the Faculty of Medicine and Health at the University of Sydney and a member of the ARC Life Course Centre. His research examines the psychosocial burden of central disorders of hypersomnolence (CDH), particularly narcolepsy and idiopathic hypersomnia, focusing on stigma, discrimination and their consequences for education, employment and wellbeing. Drawing on co-design, psychometrics and patient-reported outcome measure development, he leads projects that translate lived experience into validated instruments, research priorities and self-management resources. He works with a national network of clinicians and consumer organisations to improve care for people with CDH.
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 Eleni Kavaliotis is a Research Fellow in the Sleep and Brain Health Laboratory at Monash University and a registered Psychologist. Her research focuses on the role of sleep loss and sleep disorders in shaping cognition, mood, and overall health and well-being. Eleni’s aim is to bridge the gap between scientific research and community impact, helping individuals achieve better sleep and, in turn, better mental health. She is currently leading a project aiming to design and implement a digital sleep program to improve access to preventive sleep health interventions for community-dwelling people living with cognitive impairment and their care partners.
Dr Jenny Haycock
Research Associate
Flinders University
Chair
Biography
Dr Charlotte Gupta
Senior Lecturer
CQUniversity
Chair
Biography
