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.

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.

I came in with the motivation that there were so many people that this had happened to, and I wanted to change it.

I came in with the motivation that there were so many people that this had happened to, and I wanted to change it.

I don’t feel........

© The Conversation