From Invisibility to Influence: Progress on MBC data reforms in Australia
AUSTRALIA’S PROGRESS IS SETTING A NEW GLOBAL BENCHMARK. MBC data has long been considered a global priority 4 including by the World Health Organisation and Advanced Breast Cancer (ABC) Global Alliance, yet few countries have successfully addressed it. As The Lancet Breast Cancer Commission stated, a minimum of 70 per cent of global cancer registries should now be registering people with metastatic disease, with the goal of reaching 100 per cent in the decade ahead. 5 Australia is the first to deliver MBC data reforms through linking and collaborating across state and national data systems. Through BCNA’s advocacy, Australia’s MBC data achievements are being recognised globally and inspiring momentum to make people with MBC visible across global cancer data and healthcare systems. Together with Breast Cancer Now (UK) and Rethink Breast Cancer (Canada), BCNA launched Advancing Global Visibility for Metastatic Breast Cancer in July 2025 to showcase Australia’s data innovation and pledge ongoing advocacy for governments to improve MBC data. In September 2025, BCNA reinforced Australia’s standing as a trusted and influential voice in global health policy by guiding amendments to the United Nations Political Declaration on Non-Communicable Diseases that ensured governments, including Australia, remain committed to breast cancer action that matches its global impact. By demonstrating what is possible when governments, researchers, cancer registries and consumer advocates work together, Australia is setting a new global standard that can be adopted by other countries. The Australian Cancer Data Alliance’s role coordinating national cancer data strategies creates a unique position for Australia to continue influencing global initiatives. FUTURE PRIORITIES: SUSTAINING MOMENTUM THROUGH COORDINATED ACTION AND INVESTMENT. New South Wales, Queensland and Victoria have advanced state-based methodologies to estimate MBC prevalence, but cancer registries across Australia continue to operate with varying levels of capability, resourcing, and maturity. Multiple and incompatible data systems, inconsistent standards, and differing legislative frameworks create inequities and complexities, making it difficult for some registries to access and link state and national datasets required to accurately collect and report on their MBC populations. Sustained action and investment are needed to improve the timely collection of national data on cancer stage at diagnosis and recurrence and link together with relevant data about treatment and mortality. Future priorities are to: Sustain the Australian Cancer Data Alliance to oversee national consistency. AIHW’s Cancer and Treatment Linked Analysis Asset (CaT-Link), which includes national linked data on cancer diagnoses and deaths, and Medicare Benefits Schedule (MBS) and Pharmaceutical Benefits Scheme (PBS) data, has enabled Australia’s first national estimate of MBC prevalence. The Alliance, however, lacks ongoing funding to coordinate and strengthen data system integration across Australia’s cancer registries. Continued investment will prevent fragmented implementation of cancer initiatives and oversee consistency of national data quality standards and modelling methods.
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