By strengthening Australia’s cancer data, governments can better understand and respond to the experiences of people living with MBC through more accurate, timely, and actionable insights into cancer incidence, treatment, biomarkers, recurrence, and stage at diagnosis. Shifting from outdated research methodologies and theoretical models to real-world, linked data systems requires continued advances in digital infrastructure, artificial intelligence, and federated learning. Building Australia’s data capability is essential to understanding the profile of people living with MBC and ensuring that tailored care and support are delivered where they are needed most. TWO YEARS ON: TRANSFORMATION HAS BEEN MADE POSSIBLE. National initiatives now prioritise integrated data and optimal cancer care. In February 2024, the Prime Minister announced a $1.5 million investment to accelerate the collection of cancer stage and recurrence data. This included funding to establish the Australian Cancer Data Alliance (the Alliance) with bipartisan support to strengthen cancer registry systems, including improved MBC data. The Alliance is coordinated by the Australian Institute of Health and Welfare (AIHW), supported by Cancer Australia and the Department of Health, Disability and Ageing. It consists of state and territory cancer registries and sector experts to provide leadership and expert advice on national cancer data priorities outlined in the Australian Cancer Plan , focusing on improved access, consistency, and data integration across jurisdictions. The critical role of data in delivering optimal cancer care and improving outcomes for Australians affected by cancer is recognised in other recent health initiatives, including the National Cancer Data Framework, National Framework for Genomics in Cancer Control , and Health Technology Assessment Review . State-based innovation is driving national reform in MBC data. In late 2024, NSW implemented a world-first linked-data methodology to estimate the number of people living with MBC (prevalence) in NSW. By linking local cancer registry data and hospital data with national records about prescriptions and cancer services, the approach established the first accurate model for measuring MBC prevalence in Australia. By mid-2025, Queensland and Victoria had applied and refined the methodology within their own systems. Together, the three states are now informing national and international efforts to modernise cancer registries, strengthen data integration, and embed evidence-driven approaches to improve cancer care, research, and policy reform. Australia is now building a clearer national picture of MBC prevalence. Building on the success of state-based innovation and collaboration, Australia now has its first national estimate of how many people are living with MBC. Using linked national and state data, the AIHW, through the Alliance, has developed a new data model estimating that 20,950 Australians were living with MBC in 2024. National cancer incidence (diagnosis) data is now planned to be linked to the AIHW’s National Health Data Hub - AIHW’s major national data linkage system for health and welfare research and analysis. This is expected to strengthen capacity and enable the production of more complete and reliable estimates that will guide future cancer plans and services for people living with MBC. It will also provide a pathway to accurately estimate the impact of other metastatic cancers, such as lung and prostate, helping build a more complete and equitable picture of cancer in Australia.
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