Background
People living with metastatic breast cancer (MBC) in Australia and internationally report feeling invisible to health systems and policymakers, as population-based cancer registries do not collect stage at diagnosis or recurrence data. MBC prevalence data is crucial to ensure equitable access to care, inform research priorities and funding decisions, allocate healthcare resources appropriately and improve clinical trial access and design. However, prevalence in Australia and globally remains unknown, impacting effective surveillance and care.
For over a decade, Breast Cancer Network Australia (BCNA) has advocated for improved visibility of Australians living with MBC through consumer-led advocacy to influence policy and research outcomes.
Methods
In response to consumers’ voices, BCNA conducted interviews with people living with MBC, health professionals, researchers and government health agencies and published an issues paper in 2022 highlighting Australia’s long-term MBC data gaps.
In August 2023, BCNA convened a national roundtable with researchers, policymakers, data experts, and consumers, and in November 2023 published a roadmap to national MBC data collection based on the roundtable outcomes.
Consumers were embedded in the process including as members of project groups, participating in media and stakeholder engagement activities, co-facilitating roundtable discussions, and co-developing policy recommendations.
Results
In 2024, BCNA’s advocacy led to bipartisan support for the roadmap, and federal government funding to establish the Australian Cancer Data Alliance. Subsequently, world-first methodology was developed in New South Wales (NSW) to accurately estimate MBC data prevalence, identifying 7,900 people with MBC in NSW. BCNA is leading advocacy for other states and territories to adopt the methodology, and for this to act as a global benchmark for collecting MBC and other metastatic cancer data.