On Our Own Terms reveals the hidden costs of leadership grounded in lived experience – and possibilities for true systems transformation
New research on the role of Lived Experience Leadership in solving societal challenges shows that it is a mature, community-anchored discipline reshaping systems – and calls on institutions to recognise its legitimacy and authority.
The first phase of the On Our Own Terms project, funded by Paul Ramsay Foundation (PRF), captures insights from ten Lived Experience leaders across the country.
The report shows that Lived Experience Leadership is operating far beyond advisory or symbolic roles. Across Australia, leaders are reshaping organisations, building new structures and driving systems change, and in the process challenging institutions to recognise and resource this leadership as central to decision-making.
Project convenor Morgan Cataldo said the report highlighted the need for a critical shift from participation to genuine leadership and for institutions to recognise Lived Experience Leadership as a legitimate and hard-won form of expertise shaped by collective knowledge.
"Our research shows that Lived Experience Leadership is already driving meaningful change in addressing the social challenges we face – and that its full potential can only be realised when institutions acknowledge their own capacity to cause harm, recognise the leadership capability these leaders already hold, and are willing to embrace and be shaped by it," she said.
"Real progress means more than simply inviting lived experience and community-based knowledge into the room – it means being accountable, acting on what's heard and being willing to be changed by it."
Professor Robyn Martin from RMIT University said the project highlighted the depth of knowledge held by Lived Experience leaders that is already shaping and transforming existing systems, including approaches to research.
The report outlines ten key insights, including the need for authentic allyship and the risk that lived expertise is reduced to personal testimony, a process that can dilute and reshape community-driven goals in ways that limit the potential for transformational change.
PRF CEO Professor Kristy Muir said the research raised important questions about how organisations engaged with lived experience and offered a pathway for stronger collaboration that could shine new light on solutions to social challenges.
"Lived Experience leaders are increasingly sought after for their insights on policy development, research, service design and delivery," she said.
"This report takes us behind the scenes to understand the personal costs of providing this unique form of expertise, as well as how we can support these leaders to enable positive and meaningful change for better outcomes."
The report is now available here.
On Our Own Terms is convened by Morgan Cataldo in collaboration with Robyn Martin, Perrie Ballantyne, Suzi Hayes and Kelsey Dole.
About us:
About the Paul Ramsay Foundation
PRF is a philanthropic foundation.
The late Paul Ramsay AO established the Foundation in his name in 2006 and, after his death in 2014, left most of his estate to continue his philanthropy for generations to come.
At PRF, we work for a future where people and places have what they need to thrive.
With organisations and communities, we invest in, build, and influence the conditions needed to stop disadvantage in Australia.
