Time to Count People with Metastatic Breast Cancer

Conclusion Roundtable attendees agreed that the time is now to improve breast cancer information in our cancer registries. There was consensus that this is vital information which could improve the care and experience of breast cancer consumers, and cancer consumers more broadly. Attendees stressed that it is vital to know how many people live with metastatic breast cancer in Australia for resource allocation, health system planning, incentivising clinical trials, medication subsidy and supportive care. As noted by one attendee, ‘Breast cancer has a long history of leading the way.’ This highlights the opportunity to trial new approaches for breast cancer data collection and then apply these insights to other cancers to improve equity in care and outcomes. There was also considerable value reported in bringing the sector together, including many stakeholders who had not previously interacted despite considerable synergies in their respective work. Involving those affected by breast cancer not only in roundtable discussions but in the project co-design ensured that those who stand to see the most benefit from improvements to our cancer data were central to conversations. BCNA is well placed to continue consumer-led advocacy work in this space. BCNA now calls on decision-makers to urgently consider the roadmap and recommendations contained in this report, and to work with the sector on meaningful action for a way forward to make metastatic breast cancer count .

November 2023

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