Embed lived experience through the Lived Experience Advisory and Action Group (LEAG) to drive change
The evidence:
The State of the System report highlights that amplifying marginalised voices and co-designing support are essential to building a more equitable and compassionate cancer care landscape.
Evidence consistently shows that involving communities in governance and decision-making — through approaches such as co-production and participatory action research — improves the relevance, legitimacy and effectiveness of systems change.
We know there are communities we do not yet reach well; without adequate representation and power-sharing, well-intentioned work risks reinforcing existing inequities.
What we are curious about:
How to meaningfully involve children and young people with cancer and their families, including sharing power to achieve greater impact.
How to build community engagement and prioritise equity across the children and young people's cancer system.
How to avoid tokenism and ensure lived experience has influence.
How to employ targeted universalism, working alongside those who experience the greatest inequity.
What we want to see happen:
Children, young people and families meaningfully shape decisions across the system, with lived experience embedded in governance, design and evaluation.
Strong, trusted relationships with underrepresented groups, built in ways that are inclusive and equitable without placing the burden of change on them.
More joined-up system relationships that reduce complexity and burden for children, young people and families.
Why is this important?
We believe that embedding lived experience at the heart of governance, decision-making and system design - in ways that genuinely share power, include underrepresented groups without overburdening them, and strengthen system-wide relationships - is essential to creating more equitable, participatory and effective support for children, young people with cancer and their families.