There's a growing awareness policy works best when shaped by the people and communities who have lived through the issues it aims to address.
If we don't listen to and learn from those who have experienced issues such as homelessness, family violence, distress or trauma, we risk building systems that misunderstand the harm and the hope within those realities.
Across social and public sectors, new roles are being created for people with what is often called "lived expertise".
These are people whose personal experience informs work to improve policy, practice and research. They are advising government departments, helping to design services, informing inquiries and guiding community initiatives.
But while lived experience is often invited into the room, we still know little about what it is like to work from that experience across distinct issue areas - and about the emotional toll, risks and challenges of trying to make change inside systems that actively resist it.
To explore this further, we spoke with ten lived experience leaders as part of our research , released today.
Deep commitment
The lived experience leaders we spoke with work alongside a range of communities - for example, First Nations peoples, incarcerated women and girls, those experiencing mental distress, young people, people from LGBTIQA+ communities and those impacted by family violence.
Our research revealed that these lived experience leaders are deeply committed to structural change. They carry hard-won knowledge and a strong determination to ensure others have better experiences.
One told us:
I came in with the motivation that there were so many people that this had happened to, and I wanted to change it.
Another said:
I don't feel accountable to dominant systems […] What I feel accountable to feels greater than me - accountable to my ancestors and to those who come after me.
Influencing from the inside and outside
These leaders work across, between and beyond institutions - sometimes from the inside to influence change, other times building power outside them.
As one leader said:
I believe we need to build power ourselves and then the system will come to us for the answers, rather than us trying to fit into their structures and processes.
Moving between these spaces is not easy.
Another leader said:
We hold one shield that's fending off the system and another shield that's fending off the organisations we have to work with, and then another that's defending victim-survivors. Then we don't have anything left to protect ourselves.
Leaders are often drawing on collective experience, not just their own, and feel deep accountability to others, particularly those who share experiences of injustice and harm.
As one said:
I am accountable to the people at the end or the bottom - to service users and the people who have the most to lose.
Their approach intentionally challenges dominant hierarchies. They lead alongside others, guided by the quality of relationships they build - and by care, accountability and connection. One person told us:
I would never speak about women and girls in cages if I'm not being held accountable by the women and girls in cages […] Otherwise, you're operating from a position of "power over" - and that's not true leadership.
Hazards, harms and hope
Lived experience leadership can also carry risks. Many leaders spoke about being invited to contribute or "have a seat at the table" without being genuinely heard, or seeing action taken from their insights.
Participation often feels like a compliance exercise. Tokenism, they said, is still common. One person told us:
Something we don't talk about enough is the price we pay for sharing our lived and living experience.
Another said:
We choose to do it because we genuinely care about people we've never met - because we want people to live, because we want the systems that continue to fail them to change.
The toll that takes - the exhaustion, the trauma that's constantly brought up, the feelings of not being valued or considered - and yet still choosing to fight each day for the right reasons, is more than anyone could ever possibly imagine.
And yet, many leaders also spoke about hope. One person told us:
I do have some sort of hope most days […] This is love for, and belief in, our community. My hope is kept alive through contact with and service to my community.
Where to from here?
Our research shows lived experience leadership holds real potential to address the complex problems traditional approaches struggle to solve.
But this potential can only be fully realised when institutions recognise their own capacity to cause harm and begin to share power with those most affected.
Real progress means more than inviting lived experience into rooms or at tables - it means taking responsibility, acting on what's heard and being changed by it.
As one leader urged:
Sometimes we have to demand the impossible […] Let those with institutional power worry about how they're going to hold us back […] Most of the time, you sit at the table because collaboration is essential - but sometimes, you do have to flip it.
Lived experience leadership isn't about earning a seat at someone else's table.
It's about questioning who built the table in the first place - and creating new spaces where power, decision-making and design are genuinely shared.
Morgan Cataldo's research was funded by the Paul Ramsay Foundation.
Kelsey Dole's research was funded by the Paul Ramsay Foundation.
Perrie Ballantyne's research was funded by the Paul Ramsay Foundation.
Robyn Martin's research was funded by the Paul Ramsay Foundation.
Suzi Hayes' research was funded by the Paul Ramsay Foundation.
