Breast Cancer Network Australia
Our goal: Diverse consumer voices help to improve cancer experiences for others
Lived Experience Reference Groups focus on specific populations experiencing higher unmet supportive care needs, such as those with metastatic breast cancer, regional and rural residents, and people from LGBTIQ+ communities. Members of our metastatic reference group, for example, played a crucial leadership role in our national roundtable and roadmap report to improve collection and reporting of cancer data across Australia. Our Review and Survey Group plays a pivotal role connecting research outcomes to lived experiences of breast cancer. It offers a flexible option for people affected by breast cancer to contribute their insights to various research projects though online surveys, focus groups, reviewing clinical trial protocols, and providing feedback on new breast cancer resources. Outcomes from research projects involving our consumers are often presented at conferences across the cancer and wider health sector, amplifying the impact of their involvement.
We know that breast cancer impacts groups in the community in different ways. We are committed to engaging with people with different lived experiences of breast cancer. Through their personal insights and stories, we ensure that cancer policy, research, and services lead to a better experience for others. Consumers also benefit by developing skills in research and data, building confidence to contribute to future projects. Our recently established Consumer Advisory Group elevates consumer leadership within BCNA by creating a formal role for our consumers in providing strategic advice that supports governance and decision-making. The Seat at the Table program, our flagship initiative, trains consumers to represent diverse voices in government policy, stakeholder engagement, research, and advocacy. We also appoint Consumer Representatives to organisational working groups and projects to ensure lived experiences are considered across all aspects of our work.
I found the training highly worthwhile. It reinforced my understanding of the purpose of BCNA and the role of Consumer Representatives, together with my interest and determination to continue to be involved and to contribute. BCNA Consumer Representative
How your investment can help We will implement an audit of current Review and Survey Group membership to make recommendations for future recruitment that focuses on diverse views and experiences. By expanding and enhancing the role of our Review and Survey Group, we can encourage more consumer-informed breast cancer research. Co-designing research with consumers ensures that projects focus on the issues that matter most to people impacted by breast cancer, and ultimately result in better treatment and support outcomes. To keep building on the success of our consumer network, we need to invest in
their education and development. We want to invite up to 15 members of our broader consumer network, including our Lived Experience Reference Groups, to attend our national consumer workshop at the COSA Cancer Survivorship Conference in March 2025. By representing BCNA at this event, our consumers become collaborative leaders with us to speak on behalf of all people impacted by breast cancer and demonstrate the value of co-design. It also creates an opportunity for peer-to-peer connection, shared learning, and will help build our next generation of consumer leaders.
Consumer Advisory Group strategic advice to support governance and decision making
Seat at the Table Formal training program for consumer representatives
Lived Experience Reference Groups advice from unique perspectives (LGBTIQ+, rural and regional, metastatic breast cancer)
Review and Survey Group research project engagement and participation
Investment opportunity: $100,000
Consumer Network over 180,000 members
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