Currently accepted at: Journal of Participatory Medicine
Date Submitted: Jul 12, 2026
Date Accepted: Oct 19, 2026
This paper has been accepted and is currently in production.
It will appear shortly on 10.2196/106859
The final accepted version (not copyedited yet) is in this tab.
Implementation of a co-production protocol with young people with lived experience of mental ill-health: mixed methods evaluation
ABSTRACT
Background:
Co-production protocols are increasingly recommended in youth mental health research, yet empirical evaluations of how they are refined over time remain rare. The Lived Experience Working Group (LEWG) was established in 2021 within the Youth Mental Health and Technology (YMHT) Team at the Brain and Mind Centre, The University of Sydney, to embed lived expertise within research governance and practice. Following a pilot evaluation in 2022, this paper reports the second evaluation of the co-developed co-production protocol, conducted in 2024.
Objective:
This study aimed to evaluate the implementation and iterative refinement of the LEWG co-production protocol, examining how young people with lived experience perceived their involvement and how the protocol supported or constrained meaningful participation.
Methods:
The LEWG comprises young people aged 16 ≤ 30 years and is supported by an interdisciplinary planning group. A two-stage evaluation was conducted. In Stage 1, 13 participants (8 aged 26–30 years; 6 cisgender women) completed a survey. In Stage 2, a subset (n = 8) took part in a voluntary follow-up discussion. Quantitative data were analysed descriptively and qualitative data using a hybrid inductive/deductive thematic analysis. Participants’ reflections informed interpretation and ongoing protocol refinement.
Results:
Participation was primarily motivated by altruistic reasons and the opportunity to contribute to mental health research, with paid participation an important facilitator. Thematic analysis identified three themes: i) relational safeguarding, ii) capability-building, and iii) structural inequities. The refined protocol appeared to strengthen participants’ sense of safety, value, and recognition of expertise through more structured practices. Transparent accountability and capability-building supported trust and sustained participation, while academic privilege, stigma, and tokenism remained ongoing challenges.
Conclusions:
This evaluation offers a reflexive account of an iterative co-production protocol as experienced by LEWG members. Iterative refinement, transparent accountability, and embedded capability-building are necessary for meaningful integration of lived expertise, yet protocol-level mechanisms alone cannot resolve broader structural inequities shaping participation.
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