This discursive paper presents a lived experience leadership model as developed as part of the Activating Lived Experience Leadership (ALEL) project to increase the recognition and understanding of lived experience leadership in mental health and social sectors. The model of lived experience leadership was formulated through a collaboration between the South Australian Lived Experience Leadership & Advocacy Network and the Mental Health and Suicide Prevention Research and Education Group.
As one of the outcomes of the ALEL research project, this model incorporates findings from a two-year research project in South Australia using participatory action research methodology and cocreation methodology. Focus groups with lived experience leaders, interviews with sector leaders and a national survey of lived experience leaders provided the basis of qualitative data, which was interpreted via an iterative and shared analysis. This work identified intersecting lived experience values, actions, qualities and skills as characteristics of effective lived experience leadership and was visioned and led by lived experience leaders.
The resulting model frames lived experience leadership as a social movement for recognition, inclusion and justice and is composed of six leadership actions: centres lived experience; stands up and speaks out; champions justice; nurtures connected and collective spaces; mobilises strategically; and leads change. Leadership is also guided by the values of integrity, authenticity, mutuality and intersectionality, and the key positionings of staying peer and sharing power.
This model is based on innovative primary research, which has been developed to encourage understanding across mental health and social sectors on the work of lived experience leaders in seeking change and the value that they offer for systems transformation. It also offers unique insights to guide reflective learning for the lived experience and consumer movement, workers, clinicians, policymakers and communities.
The Lived Experience Leadership and Advocacy Network (SA) and UniSA’s Mental Health and Suicide Prevention Research and Education Group offer thanks and recognition to the Fay Fuller Foundation for the significant support and funding of the Activating Lived Experience Leadership Project.
The authors acknowledge and value the wisdom, knowledge and skills that people have shared with this project as advisers, research participants, members of the lived experience community, sector leaders and allies. The authors thank them for sharing their passion, knowledge and commitment in continuing to shape the key directions and substance of the project.
Project Advisory Group: Anne Barbara, Brooke Bickley, Geoff Harris, Jill Chapman, Julia McMillan, Lee Martinez, Leticia Albrecht, Lisa Huber, Richard, Sean, Tania Smith, Tayla Reynolds.
Loughhead, M., Hodges, E., McIntyre, H., Procter, N.G., Barbara, A., Bickley, B., Harris, G., Huber, L. and Martinez, L. (2023), "A model of lived experience leadership for transformative systems change: Activating Lived Experience Leadership (ALEL) project", Leadership in Health Services, Vol. 36 No. 1, pp. 9-23. https://doi.org/10.1108/LHS-04-2022-0045
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