LIVED-EXPERIENCE RESEARCHERS IN THE HEALTH AND MEDICAL RESEARCH WORKFORCE

The Alive National Centre For Mental Health Research Translation

Australia has had research policy support for the active involvement of health consumers and the community in research for over two decades, as reflected in the Statement on Consumer and Community Involvement in Health and Medical Research. This recognises and centres the importance of a lived experience of a health condition in research and translation. Over that time, major funding schemes have changed their grant application criteria to require some form of active consumer and carer involvement as part of methodological rigour.

As research practice has evolved in response to this shift, a new health and medical research workforce role has emerged, the Lived-Experience Researcher. LivedExperience Researchers use our own experience of health conditions, system access and ongoing impacts of experiences such as trauma and violence, alongside learned knowledge.

These roles are the fullest form of centring of lived experience as critical research expertise, shifting control of topics, design, conduct and translation and increasing the likelihood of relevant research with impact. Embedded Lived-Experience Researcher roles also create structures for other forms of consumer and community involvement, by bridging lived and learned knowledge communities.

Research careers do, however, carry some unique challenges for Lived-Experience Researchers. Motivation and confidence can be impacted by scarce opportunities to apply for funding, due to alternative career trajectories where traditional research outputs are not in focus.

The highly competitive and hierarchical nature of health and medical research is also fertile ground for stigma and discrimination. Open identification is central to LivedExperience Researcher roles, and functions to combat the stigma associated with our experiences. Paradoxically, this automatic disclosure often increases the potential for stigmatising attitudes and discriminatory practices, undermining perceptions of competence and affecting career paths.

Coupled with other common research workforce challenges such as high levels of job insecurity, methodological and discipline silos, hierarchies of university-versus community-based research, and often isolated working conditions, there is a great need for a dedicated focus on Lived-Experience Researcher workforce capacity-building.

THE ALIVE NATIONAL CENTRE FOR MENTAL HEALTH RESEARCH TRANSLATION LIVED-EXPERIENCE RESEARCH COLLECTIVE

The ALIVE National Centre for Mental Health Research Translation was created in 2021, funded by a $10 million National Health and Medical Research Council Special Initiative in Mental Health. Investigators span 17 Australian universities, across health and medical disciplines, social science, the creative arts, humanities, health services research, primary care and community settings, Aboriginal and Torres Strait Islander research and health economics, with founding partner organisations across mental health service delivery, clinical innovation in health care, mental health policy advocacy and translational research.

Lived expertise is one of the ALIVE National Centre core values, demonstrated across our operations. We use “lived experience” to refer both to people with their own experience of mental ill-health and carer, family and kinship group members.

Our governance committees are co-chaired by people with lived-experience, and we operate an embedded model of lived-experience in research). The model places lived-experience at the heart of the National Centre and creates the scaffolding necessary to meet our goal of integrated lived-experience knowledge and expertise in mental health research translation and systems change.

Central to our embedded model is the Lived-Experience Research Collective, a dedicated research capacitybuilding initiative, focused on tailored training, mentorship, and career pathways.

We apply an inclusive, community-led approach to lived-experience, allowing people and communities to self-identify and define lived-experience to ensure a shared understanding. Currently 177 members strong, our Collective includes people in research roles across universities and community and/ or government sectors.

The Collective aims to address the major challenges facing LivedExperience Researchers. Members participate in bi-monthly gatherings for peer connection, mentoring, collaboration, and career development.

We also offer intensive research skills-training, through short courses, paid research roles to collaborate on Centre projects, and an exchange program that matches Lived-Experience Researchers with traditional academic researchers for mutual learning.

The Collective leads an ALIVE National Centre flagship project, The Long Conversation, which is entirely designed and led by Lived-Experience Researchers. It aims to establish the who, what, where and how of livedexperience mental health research in Australia and will inform our development of a National Strategy for LivedExperience in Mental Health Research.

TOWARDS A NATIONAL STRATEGY FOR LIVED-EXPERIENCE IN MENTAL HEALTH RESEARCH

Literature indicates that existing initiatives that have advanced Lived-Experience in mental health research within universities are scarce and largely isolated. Given the diverse roots of Lived-Experience Researcher identities, and gaps in capacity-building, for growth and continuity there is a need for a National Strategy for LivedExperience in Mental Health Research.

The Strategy will provide critical lived-experience guidance to the health and medical research sector more broadly on how these roles are defined and not defined in the literature, the impacts on research and translation, and guidance to grow and support the emerging LivedExperience Researcher workforce to progress effective centring of consumer and community perspectives. Further information: https://alivenetwork.com.au/

Author: Michelle Banfield, Co-Director and Lived-Experience Research Lead Victoria J Palmer, Co-Director and Co-Design Living Labs Lead