Embed lived experience through the Lived Experience Advisory and Action Group (LEAG) to drive change
The evidence:
The State of the System report asserted that: "by amplifying the voices of these marginalised communities and co-designing and tailoring supports to their specific needs we can strive towards a more equitable and compassionate cancer care landscape." And support for a system-wide lived experience group from Collective partners’ own voice boards.
Wider evidence shows the benefit of involving communities in governance and decision-making.
Co-production and Participatory Action Research improve the relevance, legitimacy, and effectiveness of systems change work. Without inclusive design and power‑sharing engagement is not equitable or meaningful.
However, there are communities who do not have strong relationships with. Designing change without adequate representation can mean that well intentioned projects risk increasing existing system inequities.
What we are curious about:
How to meaningfully involve children and young people with cancer and their families – 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 is influential.
How we employ targeted universalism, working alongside those who experience the greatest inequity.
What we want to see happen:
As a Collective, we aim to ensure that children, young people and their families can drive the decisions that affect them. We need to embed their lived experiences into our governance and decision-making processes.
We want to hear from and build meaningful relationships with underrepresented groups - whilst not placing the burden of change on them.
By working together, we want to drive system wider relationships to reduce the burden on children, young people and their families.
Why is this important?
Engagement with children and young people with cancer in health decision‑making remains limited. Embedding lived experience ensures greater equity, representation, and more participatory system design.
It is important that the Lived Experience Action and Advisory Group (LEAG) meaningfully shares power and resources with children and young people affected by cancer and their families across the system.
The aim is to continue embedding lived experience in decision-making, design, and evaluation.