Working it out together: A toolkit for Lived Experience-centred mental health research

Embedding people with Lived Experience as active leaders and creators — not just participants — is critical to producing research that improves real outcomes for consumers, families, carers, supporters and kin.

Despite more than 20 years of advocacy in peer-reviewed literature and health policy, people with Lived Experience continue to play little to no role in most mental health research. The toolkit argues that this contributes directly to poor research outcomes and calls for intentional, structured inclusion of Lived Experience leadership at every stage of the research life cycle — from grant development and research design through to dissemination and evaluation.

A Lived Experience-led scoping review found that consumers, families, carers, supporters and kin are frequently left out of defining research questions, data collection, data analysis, and learning the outcomes of research they contributed to.

The review identified 81 peer-reviewed and grey publications and consulted with 23 people. It found that while a strong philosophical argument for Lived Experience leadership exists, practical guidance on how to achieve this is largely absent. People with Lived Experience were often confined to being research participants rather than active contributors, and were rarely involved in technical activities such as design, analysis or dissemination — despite evidence that with the right training, mentoring and support, this is both possible and valuable.

Complex power imbalances rooted in professional, historical, social and statutory structures significantly limit how people with Lived Experience lead and participate in mental health research, and these must be addressed intentionally and transparently throughout a project.

People with Lived Experience often feel outnumbered, tokenised or overruled in research settings. The toolkit identifies that addressing power is not a one-off conversation — it requires ongoing, iterative processes including transparent decision-making, shared governance, and accountability tools such as the Lived Experience Action Log. Research teams are encouraged to openly discuss and document how power is distributed across all team members, including the impact of factors such as professional seniority, organisational clout and academic credentials.

Co-production — where people with Lived Experience are central to identifying the research question and to designing and delivering the project as equals — is the highest standard of participatory research, but it is widely co-opted, misunderstood and confused with consultation or co-design.

The toolkit draws on a reflection from the authors of Co-production: Putting principles into practice in health contexts (Roper, Grey & Cadogan, 2018) to highlight that co-production has gained wide appeal but is now often applied in name only, de-centring consumers and re-centring other stakeholders. Research teams are encouraged to use accountability tools such as Arnstein's Ladder of Participation to honestly assess and transparently report their actual level of Lived Experience engagement, rather than claiming co-production when the conditions — including equal power, sufficient time, resourcing and Lived Experience support — have not been met.

Research designs frequently exclude people from First Nations communities, culturally and linguistically diverse backgrounds, LGBTIQA+SB communities, people with disability, and those in rural or restrictive settings — often through structural and cultural barriers that are within researchers' power to address.

The toolkit highlights that accepted research practices such as requiring audio recording consent, conducting meetings only in English, or using formal and inaccessible settings can inadvertently discriminate against and exclude the very communities research aims to serve. It emphasises that First Nations peoples, who experience mental health challenges at higher rates than the general population, require research approaches grounded in Social and Emotional Wellbeing frameworks, community-controlled processes, and cultural integrity. Accessibility and inclusion must be planned, resourced and reported — not treated as optional additions.

Research teams must actively track, evaluate and report how Lived Experience expertise was integrated and acted upon throughout a project — not simply state that it occurred.

Lived Experience literature consistently identifies that inclusion of people with Lived Experience in research has been tokenistic or limited to participation. The toolkit provides two accountability tools — the Lived Experience Action Log and a structured evaluation table mapped to all 17 research actions — to help research teams demonstrate where, when, how and to what degree Lived Experience input shaped their project. If Lived Experience advice was not acted upon, teams are expected to document why and report this transparently.

Yes — the toolkit was Lived Experience-led in its development. It drew directly on the expertise of people with Lived and Living Experience of mental ill-health and of caring, through three Design Expert Advisory Groups (n = 25, including consumers, families, carers, supporters and kin, researchers and service representatives) and Expert Taskforce consultations including focus groups with consumers (n = 8) and carers, families, supporters and kin (n = 8).

Yes — the toolkit incorporates practice wisdom from Lived Experience organisations, peak bodies, mental health services, Lived Experience leaders, and allies. This is reflected throughout the Dr Cat Commentary sections, Case Studies, and the inclusion of perspectives from organisations such as VMIAC, Tandem and Wellways Australia.

Yes — the toolkit is grounded in a Lived Experience-led rapid scoping review (Brasier et al., 2024) conducted for the Victorian Collaborative Centre for Mental Health and Wellbeing, which identified 81 peer-reviewed and grey publications and consulted with 23 people. The toolkit also references an extensive body of peer-reviewed literature and established research frameworks throughout.