Accessibility Tools

Lived Experience Leadership

— Case studies / Surveys

Happell, B., Scholz, B., Gordon, S., Bocking, J., Ellis, P., Roper, C., Liggins, J., & Platania-Phung, C. 
“I don’t think we’ve quite got there yet”: The experience of allyship for mental health consumer researchers. 
Journal of Psychiatric and Mental Health Nursing
25(8), 453–462. 
Membership, Subscription or Payment


Introduction: Australia and New Zealand mental health policy requires consumer participation in all aspects of mental health services. Systemic participation informs and improves the quality of mental health services. Collaboration with consumer researchers should be similarly required. Enhanced understandings of collaborations are needed. Aim To enhance understanding of the perspectives and experiences of nonconsumer researchers in working collaboratively with consumers as researchers.

Scholz, B., Bocking, J., & Happell, B. 
Improving exchange with consumers within mental health organizations: Recognizing mental ill health experience as a “sneaky, special degree”. 
International Journal of Mental Health Nursing
27(1), 227–235. 
Membership, Subscription or Payment


Stigmatizing views towards consumers may be held even by those working within mental health organizations. Contemporary mental health policies require organizations to work collaboratively with consumers in producing and delivering services. Using social exchange theory, which emphasises mutual exchange to maximise benefits in partnership, the current study explores the perspectives of those working within organizations that have some level of consumer leadership.

Scholz, B., Bocking, J., & Happell, B. 
How do consumer leaders co-create value in mental health organisations?. 
Australian Health Review
41(5), 505. 
Full Text


Objectives: Contemporary mental health policies call for consumers to be involved in decision-making processes within mental health organisations. Some organisations have embraced leadership roles for consumers, but research suggests consumers remain disempowered within mental health services. Drawing on a service-dominant logic, which emphasises the co-creation of value of services, the present study provides an overview of consumer leadership within mental health organisations in the Australian Capital Territory.

Loughhead, M., McIntyre, H., Hodges, E. & Procter N.G. 
Lived experience leadership for organisational and systems change: a scoping review of concepts and evidence. 
University of South Australia and Lived Experience Leadership and Advocacy Network SA, Adelaide
Full Text


This literature review is about the concept and achievement of lived experience leadership, and the roles that leaders undertake in seeking change, sharing a vision of recovery and enhanced citizenship. It is also about the organisational and system conditions that support leaders across different settings of activity, including traditional mental health services, academia and consumer run organisations (CRO), and the informal places where leaders seek and organise for change.

Loughhead, M., Hodges, E., McIntyre, H., & Procter, N.G. 
A roadmap for strengthening lived experience leadership for transformative systems change in South Australia. 
Adelaide: SA Lived Experience Leadership and Advocacy Network and University of South Australia
Full Text


In 2019 the SA Lived Experience Leadership Advocacy Network (LELAN) and UniSA’s Mental Health and Suicide Prevention Research and Education Group (MHSPRE) were successful in gaining funding from the Fay Fuller Foundation to establish the Activating Lived Experience Leadership (ALEL) project. The ALEL project was designed as a participatory action research (PAR) and community development project, bringing people together to improve the way that lived experience leadership is defined, recognised and utilised at the systems level.

Project Partners

Mental Health Lived Experience Engagement Network Logo

National Mental Health Consumer & Carer Forum logo

Acknowledgement of Country

The National Mental Health Consumer and Carer Forum and the National Primary Health Network Mental Health Lived Experience Engagement Network acknowledge the Traditional Custodians of the lands and waters on which we work and live on across Australia. We recognise their continuing connection to land, waters, culture and community. We pay our respects to Elders past and present.

Definition of Aboriginal and Torres Strait Islander Lived Experience

“A lived experience recognises the effects of ongoing negative historical impacts and or specific events on the social and emotional wellbeing of Aboriginal and Torres Strait Islander peoples. It encompasses the cultural, spiritual, physical, emotional and mental wellbeing of the individual, family or community.

“People with lived or living experience of suicide are those who have experienced suicidal thoughts, survived a suicide attempt, cared for someone through a suicidal crisis, been bereaved by suicide or having a loved one who has died by suicide, acknowledging that this experience is significantly different and takes into consideration Aboriginal and Torres Strait Islander peoples ways of understanding social and emotional wellbeing.” - Aboriginal and Torres Strait Islander Lived Experience Centre

We welcome Aboriginal and Torres Strait Islander people to this site and invite them to provide any feedback or items for inclusion.

Recognition of Lived Experience

We also recognise people with lived and living experience of mental ill-health and recovery and the experience of people who are carers, families, kin, or supporters.


Aboriginal flag
Torres Strait Islander flag
© Lived Experience Digital Library. All rights reserved.