Executive summary On 2 August 2023, Breast Cancer Network Australia (BCNA) convened a national roundtable in Canberra to build consensus among government and cancer sector stakeholders regarding what is needed to progress the routine capture and reporting of breast cancer stage and recurrence data across all states and territories. There is widespread agreement about the significant challenges the lack of national breast cancer stage at diagnosis and recurrence data presents in meeting the needs of Australians affected by breast cancer. Despite this, the gap in cancer data has remained. This impedes Australia’s ability to improve the outcomes of people affected by breast cancer. 1 Without national breast cancer stage and recurrence data, it is not possible to know how many people in Australia are living with metastatic breast cancer, where they live, how long before their cancer progressed and other demographic and clinical characteristics. The lack of these data hampers Australia’s ability to identify national- level patterns in delayed diagnosis, cancer recurrence and survival, and to evaluate screening programs and assess new breast cancer treatments that might benefit Australians affected by breast cancer. Additionally, the lack of population-level breast cancer stage and recurrence data exacerbates feelings of ‘invisibility’ that many people living with metastatic disease report experiencing. 2
About the roundtable The roundtable was facilitated by
Professor Sanchia Aranda AM, alongside BCNA CEO Kirsten Pilatti and Director Policy Advocacy & Support Services Vicki Durston, with support from key policy and advocacy staff, Sam Mills, and Lisa Morstyn. The agenda was co- designed with the project’s steering committee, which included people affected by breast cancer. In total, 41 representatives attended, including representatives from the Australian Government, state and territory governments, Cancer Australia, the Australasian Association of Cancer Registries (AACR), the state and territory population-based cancer registries, professional associations and colleges, non-profits, researchers and breast cancer consumers. The roundtable aimed to build consensus among attendees about what short-, medium- and longer-term actions would enable the routine collection, collation, reporting and use of national breast cancer stage and recurrence data. The roundtable also aimed to develop a call to action to inform future national, state and territory government policy and funding priorities, and to identify areas for further research and advocacy.
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National Roundtable Report
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