ArticleHealth expectations : an international journal of public participation in health care and health policy2024
Pathways for Strengthening Lived Experience Leadership for Transformative Systems Change: Reflections on Research and Collective Change Strategies.
Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 1 of them a synthesis that pooled it.
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Who cites it
7 citing papers in PubMed, 1 synthesis or guideline pooled it.
- From community engagement to lived experience leadership: a systematic review of HIV services among men who have sex with men.Health promotion international · 2026Pooled it
- Consumer and Stakeholder Perspectives About the Lived Experience Advisor Programme: A Qualitative Descriptive Study.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Partnering with people with lived experience in eating disorder research: conceptual and practical considerations.Journal of eating disorders · 2026Article
- Alignment of Lived Experience Questions with the Medical Literature in Bipolar Disorder: A Topic Modelling Approach: Adéquation entre les questions relatives à l'expérience vécue et la littérature médicale concernant le trouble bipolaire : Une approche de modélisation de sujets.Canadian journal of psychiatry. Revue canadienne de psychiatrie · 2026Article
- Co-Production With Mental Health Family Carers: The Value, Outcomes and Benefits for Family Carers and Academic Researchers.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- An Exploratory Study of Research Needed for the Improvement of Care and Services for Persons with a Lived Experience of Mental Health Challenges.International journal of environmental research and public health · 2026Article
- Capacity-building strategy for next-generation mental health research: embedding a national network infrastructure to grow mental health researcher capabilities and mental health lived-experience research leaders.BMJ mental health · 2025Article
Corrections and comments
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Authors and funding
9 authors.
Funding
Abstract
introductionThe Activating Lived Experience Leadership (ALEL) project was a South Australian participatory action research project that aimed to improve the ways lived experience is recognised, valued and integrated across mental health and social sector systems. ALEL was completed during 2019-2021, where it engaged 182 participants in generating community action and research knowledge.
objectiveOur paper discusses the project's processes of building a collective partnership among lived experience leaders and other leaders from within the sector, so that the actions and strategies identified through research could be implemented by systems-level impact. We describe the collaborative process and key learnings that resulted in eight key action areas for transformative systems change in South Australia.
methodsThe project invited a diverse range of self-identified lived experience and other leaders to be involved in a PAR process featuring formal qualitative research (focus groups, surveys and interviews) as well as community development activities (leaders' summit meetings, consultations, training and community of practice meetings). These processes were used to help us describe the purpose, achievements and potential of lived experience leadership. Project priorities and systems-level analysis was also undertaken with lived experience sector leaders and project advisors across two leaders' summit meetings, integrating research outcomes with sector planning to define high-level actions and a vision for transformational change.
resultsParticipatory action research as informed by systems change and collective impact strategies assisted the project to generate detailed findings about the experiences and complexities of lived experience leadership, and collective responses of how systems could better support, be accountable to and leverage lived experience perspectives, experience and peer-work approaches.
conclusionSystems change to define, value and embed lived experience leadership benefits from collective efforts in both formal research and sector development activities. These can be used to generate foundational understandings and guidance for working together in genuine ways for transforming mental health and social sector systems, experience and outcomes. PUBLIC CONTRIBUTION: Members of lived experience communities codesigned the project, and contributed to project governance and the development of all findings and project reports.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.