Embedding lived experience in mental health and substance use research: Building collaborative and inclusive pathways

Abstract Background Embedding perspectives of people with living and/or lived experience (LLE) of mental health and/or substance use conditions is increasingly recognised as best practice in undertaking relevant, ethical and impactful research. However, meaningful LLE engagement within academic research centres remains inconsistent, and practical guidance on implementation is limited. This study compared perspectives of people with LLE involved in research (members of the Lived Experience in ReseARch Network or ‘LEARN’) and staff at a mental health and substance use research centre to examine barriers and facilitators to engagement, and co‑develop strategies to meaningfully embed LLE within centre processes. Methods A mixed-methods design was used. Phase 1 involved online surveys with LEARN members ( N = 37) and staff ( N = 52). Quantitative data were analysed descriptively, and group differences were compared using Fisher’s exact tests. Open-text responses were inductively coded. Phase 2 involved a co-development workshop ( N = 11) to discuss, refine, and translate Phase 1 findings into practical strategies for building collaborative pathways and aligning research priorities. Workshop sentiments were analysed using reflexive thematic analysis. Results Both groups strongly endorsed the importance of LLE involvement in improving research quality, relevance and translation. Most staff ( n = 44, 88%) and LEARN members ( n = 27, 93%) strongly supported LLE involvement in research, especially during idea formation and intervention development stages. Both groups wanted the research centre’s engagement to increase from the current rating of 'advisory' level to 'co-production' or 'lived experience led'. Engagement was viewed as most valuable during early research stages; LEARN members expressed interest in contributing to measure development, ethics applications and data analysis. Key barriers included time and funding constraints, challenges ensuring diverse representation, inconsistent structural support, and risks of tokenism. Findings informed an ‘ecosystem of engagement’ model describing organisational facilitators, collaborative practices (e.g., power-sharing, adaptive feedback), and anticipated outcomes (e.g., strengthened research processes, LLE leadership). Conclusions These findings offer a roadmap for research centres seeking to embed lived experience sustainably, authentically, and equitably. Meaningful LLE engagement requires sustained organisational commitment including adequate remuneration, formalised infrastructure, capacity-building opportunities, and clear leadership pathways. Co-developing and co-evaluating these pathways can support authentic partnerships, improve research quality, and contribute to both organisational and system-level transformation.