Working It Out Together: Phase 2 Report — A toolkit and workbook for Lived Experience-centred mental health research

A Lived Experience-led rapid scoping review of 81 peer-reviewed and grey literature publications confirmed that the people most impacted by mental health research — consumers, families, carers, supporters and kin — are routinely excluded from defining research questions, contributing to data collection and analysis, and learning the outcomes of research they participated in.

Despite more than 20 years of calls in policy and peer-reviewed literature for meaningful Lived Experience inclusion, mainstream research practices have changed little. People with Lived Experience are frequently left out of technical research activities and confined to the role of participant rather than active contributor or leader. The report argues that capability building, mentoring, and intentional opportunity creation are essential to change this.

Systemic, historical and institutional power imbalances mean that people with Lived Experience are frequently excluded from leading research grants, overruled in decision-making, or involved in tokenistic ways that do not reflect genuine partnership.

The report identifies that addressing power requires intentional, transparent and ongoing processes — including governance structures, shared decision-making frameworks, and accountability tools such as the Lived Experience Action Log used in this project. Co-produced research shifts the dynamic from "expert over" to genuine partnership and ownership, but only when Lived Experience people are involved from the very beginning, including in defining the research question and determining how findings are shared.

The scoping review found that while intersectionality was frequently acknowledged as a priority in the literature, specific guidance on how to incorporate it meaningfully into research design was largely absent. Publications rarely addressed the intersectional experiences of First Nations communities, culturally and linguistically diverse people, neurodiverse people, people with disability, and LGBTIQA+SB people in relation to mental health research.

The report recommends connecting directly with local communities to understand their specific research needs, and points to initiatives such as the Collaborative Centre's Translational Research Strategy 2024–2027 as examples of applying an intersectional lens to mental health research at a systemic level.

First Nations people are significantly overrepresented in poor mental health outcomes — including suicide rates twice those of non-Indigenous Australians — yet remain underrepresented in research and service development. Traditional research approaches have frequently been conducted on, rather than with, First Nations communities, contributing to deep mistrust.

The report emphasises that culturally safe and community-controlled research is essential, drawing on frameworks such as the NHMRC's Keeping Research on Track II. It highlights that Social and Emotional Wellbeing — a holistic concept connecting mental health to family, community, culture, language and Country — must be centred in research design, and that First Nations leadership at every stage of research improves outcomes and builds trust.

The scoping review found that qualitative research was highly valued in Lived Experience research contexts, with co-production and co-design identified as the most effective approaches for genuinely embedding Lived Experience leadership. However, these methods are frequently co-opted by non-Lived Experience researchers in ways that maintain power and control over key decisions.

The report provides detailed guidance on interviews, focus groups, narrative analysis, thematic analysis and grounded theory, alongside co-production and co-design methods including storyboarding and artistic approaches. It emphasises that people with Lived Experience can be trained to contribute meaningfully to data collection, coding and analysis, and that reflexivity, member checking and transparency are essential practices for ensuring research findings authentically reflect participants' experiences.

The report identifies that accountability — actively monitoring, recording and sharing how well Lived Experience expertise has been integrated into a research project — is essential but currently underdeveloped. There are insufficient standardised or validated measures based on Lived Experience conceptions, and the impact of co-production is often longer term, making it difficult to accurately assess.

The project introduced the Lived Experience Action Log as a practical accountability tool that tracks how input from Expert Advisory Groups was used (or not used) throughout the project, with reasons recorded transparently. The report recommends that researchers evaluate their own processes and be transparent about the authenticity of any research that claims to be Lived Experience-centred.

Yes — the research drew on this pillar. The report was Lived Experience-led throughout. Design Expert Advisory Group sessions (n=25) included consumers, families, carers, supporters and kin. Expert Taskforce consultations included focus groups with consumers (n=8) and carers, families, supporters and kin (n=8). Lived Experience perspectives directly shaped the research question, toolkit design, and accountability processes used.

Yes — the research drew on this pillar. The project team included practitioners working from Lived Experience perspectives across designated consumer, carer and intersectional roles. Practice wisdom from peer workers, Lived Experience research assistants, policy advisors, and service practitioners was integrated throughout the project and is reflected in the toolkit's practical tools, case studies and workbook exercises.

Yes — the research drew on this pillar. The report is grounded in a Lived Experience-led rapid scoping review of 81 peer-reviewed and grey literature publications. It also draws on established research frameworks, international trends, and evaluation of the project's own Lived Experience engagement processes through the Lived Experience Action Log.