Powering Up: a qualitative evaluation of the art and science of meaningful co-production for health equity.
Background Current quality improvement (QI) efforts rarely engage with the structural conditions that sustain health inequalities. Powering Up tested whether creative co-production-using arts, storytelling and citizen science-could move beyond tokenism to meaningfully involve young people (YP) experiencing health inequalities in shaping more equitable paediatric care. Methods Conducted in Birmingham and London, the study compared two creative co-production models: LISTEN UP! (science-based) and SHOW UP! (arts-based). Across both sites, 116 participants (aged 13-18, plus clinicians) engaged in participatory workshops, youth-led investigations and co-produced public outputs. In this process evaluation, we used feminist, community-based and constructivist principles to undertake a reflexive thematic analysis of creative artefacts, observations and participant reflections to explore how co-production was implemented, what supported or constrained it and what was learnt about embedding equity-enhancing participation. Results Creative co-production catalysed transformation through three mechanisms-Education, Empathy and Expression-which validated lived experience, deepened trust and redefined whose knowledge counts in healthcare. YP reported increased confidence and systemic belonging; clinicians gained insight into social determinants and relational care. Yet entrenched Intellectual, Institutional and Interpersonal barriers-limited time, emotional labour and structural misalignment-restricted wider uptake. Sustaining this work required extensive unpaid and affective labour, resulting in moral distress and burnout among facilitators. This revealed a paradox: co-production as a labour of love operating within systems whose structures make that labour unsustainable. Conclusions Meaningful co-production is not a technical fix, but a moral and political practice grounded in Respect, Relationships and Reciprocity. While creative methods can catalyse relational healing and systemic insight, their continuation demands policy-level recognition, funding reform and protection of the human infrastructure that makes participation possible. Without structural investment, co-production risks remaining an ethical aspiration performed in unsustainable conditions-an institutional hypocrisy that must be addressed for health systems to deliver equity.