Aim
Meaningful consumer engagement is increasingly recognised as essential to improving cancer outcomes. In 2026, Cancer Council NSW established the Lived Experience Advisory Forum (LEAF) to embed the voice of people with a lived experience of cancer, in organisational decision-making, service design, research and advocacy. The aim is for LEAF to become a sustainable model for consumer participation across the organisation.
Methods
LEAF was established to integrate lived experience into Cancer Council NSW's strategic and operational activities. Following an expression of interest process, 50 members were recruited, including people with lived experience of cancer, carers and family. Culturally and linguistically diverse representation includes Aboriginal and Torres Strait Islander, Spanish, Serbian, Turkish, Arabic, Portuguese, Armenian, Cantonese, Burmese and Greek-speaking participants. A governance framework was implemented, including member induction, terms of reference, participation agreements including code of conduct and financial recognition. To date, members have contributed through advisory meetings, consultations and project working groups, providing feedback on information resources, service design, and community engagement initiatives. Early feedback on LEAF contribution has been positive. Following further implementation, a planned evaluation of the project will be undertaken.
Results
LEAF established a scalable approach to embedding lived experience in organisational decision-making. Members contributed to cancer information resources, supportive care programs, community engagement initiatives and a Culturally Responsive Framework for Aboriginal and Torres Strait Islander peoples. Their input identified community needs, barriers to access and opportunities to improve cultural safety, accessibility and inclusion. Feedback indicates that member participation is valued and enhances the relevance and responsiveness of organisational initiatives.
Conclusion
LEAF demonstrates a sustainable model for embedding lived experience within a leading cancer not-for-profit organisation. Early indications are that structured consumer engagement strengthens program design, equity and organisational responsiveness.