Report Highlights Need for Institutional Recognition
New research has underscored the transformative role of Lived Experience Leadership in reshaping systems across Australia. Published on 4th May, the report calls for institutional recognition of this leadership’s legitimacy and authority.
Funded by the Paul Ramsay Foundation, the ‘On Our Own Terms’ project captures insights from ten Lived Experience leaders nationwide. The report illustrates how these leaders are moving beyond advisory roles to actively reshape organisations and drive systems change. Across Australia, leaders are creating new structures and challenging institutions to acknowledge this leadership as central to decision-making.
Morgan Cataldo, the project convenor, emphasised the need for a shift from participation to genuine leadership. Institutions must acknowledge Lived Experience Leadership as a form of expertise, shaped by collective knowledge. This approach is already making a significant impact on various social challenges.
“Our research shows that Lived Experience Leadership is already driving meaningful change in addressing the social challenges we face,” Cataldo said. “Its full potential can only be realised when institutions acknowledge their own capacity to cause harm and recognise the leadership capability these leaders already hold.”
Key Insights from the Report
The research outlines ten key insights, emphasizing the importance of authentic allyship and the risk of reducing lived expertise to mere personal testimony. This reduction can limit the potential for transformational change. It highlights the need for genuine collaborations that support community-driven goals.
Professor Robyn Martin from RMIT University described the depth of knowledge held by Lived Experience leaders, which is already influencing and transforming existing systems, including approaches to research. Their insights are shaping new pathways for systemic change.
“Lived Experience leaders are increasingly sought after for their insights on policy development, research, service design and delivery,” said PRF CEO Professor Kristy Muir. “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 highlights how Lived Experience Leadership is not just about inviting community voices into discussions. It requires accountability and a willingness to act on what is heard and to be changed by it. Real progress involves being open to transformation by these insights.
The ‘On Our Own Terms’ report is now available online, providing detailed insights into the personal costs and support needed for these leaders to effect positive change. This offers a pathway for stronger collaboration with Lived Experience leaders. Institutions are encouraged to engage more deeply and build partnerships that foster systemic transformation.
