Introduction: People diagnosed with metastatic breast cancer (MBC) report feeling overlooked, even invisible. A key issue contributing to MBC’s invisibility is that Australia’s population-based cancer registries (PBCRs) do not routinely collect stage at diagnosis or recurrence data; consequently, we do not know the prevalence of MBC.
Objective: Accurate, national MBC prevalence data are vital for MBC surveillance, planning and delivery of treatment and supportive care, and identifying variation in outcomes.
Methodology: Between December 2022 and August 2023, Breast Cancer Network Australia (BCNA) engaged with key stakeholders (including PBCR staff, government, epidemiologists, and professional bodies) to identify barriers, enablers and potential solutions for national stage and recurrence data. Expert interviews were conducted prior to a facilitated, in-person roundtable where recommendations were workshopped and prioritised across three areas: (1) data and processes, (2) resources and technology, (3) governance and policy. The project was co-designed with a group of BCNA’s trained Consumer Representatives with early and MBC.
Results: There was widespread consensus among attendees (n=35) regarding the need for national stage and recurrence data, and that cancer data must be considered an asset to leverage. Key barriers included: insufficient policy prioritisation of cancer data; differing state and territory legislative, governance and custodianship arrangements; methodological complexities; challenges relating to structured reporting of pathological data; workforce; and lack of enduring health data linkages. Key enablers included the inaugural Australian Cancer Plan, governments’ investment in digital health initiatives, and opportunities offered by new technology. Recommendations workshopped and prioritised across the short, medium and longer term included: deriving MBC prevalence from existing and linked registry data, investment in smaller PBCRs to achieve minimum data standards, and the development/implementation of a National Cancer Data Strategy.
Conclusion: Significant consensus was identified across the sector regarding the need for national MBC prevalence. The project generated considerable momentum, providing a groundwork for new, inter-jurisdictional collaborations, and opportunities for leadership and investment.