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Updated: Mar 11, 2026

Collecting Sleep, Circadian, Fatigue, and Performance Data in Complex Operational Environments
Published on: August 8, 2019
One Eye Open: Reflections on Embedding Lived Experience in Sleep, Circadian Rhythms, and Mood Disorder Research
Samuel J Hockey1, Sarah McKenna1, Alexander Hill1
1Youth Mental Health & Technology Team, The Brain and Mind Centre, The University of Sydney, Sydney, New South Wales, Australia.
Background:
The integration of lived experience within mental health research remains inconsistent, with many models positioning lived experience in advisory rather than embedded roles. This can limit meaningful engagement and reduce the relevance and translational impact of research.
Approach:
Drawing on an ongoing five-year Welcome Trust-funded programme investigating sleep and circadian rhythm disturbances in youth-onset mood disorders, this viewpoint reflects the development and function of a Lived Experience Working Group embedded within the Brain and Mind Centre's Youth Mental Health & Technology Team. Using this programme as a case study, we examine how co-production is implemented across research design, governance, interpretation of findings, and knowledge dissemination.
Key Insights:
We outline how co-production is actioned and refined across the lifecycle of a complex research programme. We highlight lived experience contributions alongside relational and structural tensions, and practical challenges relating to inclusion, power-sharing, scalability, and translation.
Conclusion:
Embedding lived experience as a core form of expertise requires intentional governance structures, reflexive practices, and sustained institutional investment. This article offers practical and reflective guidance for researchers seeking to meaningfully integrate lived experience within youth mental health research.
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