give a conservative estimate of there being at least 10,500 Australians living with metastatic breast cancer in 2020. Following the release of the issues paper, BCNA commenced planning for a national roundtable to be held in early August 2023 in Canberra to bring together government representatives, epidemiologists, representatives from the population-based cancer registries, professional associations, breast cancer consumers and other relevant stakeholders to discuss how best to achieve national cancer stage and recurrence data. In the 6 months prior to the roundtable, BCNA staff conducted extensive stakeholder engagement, canvassing the sector to ensure the most appropriate sector experts were selected to lead at the roundtable. The purpose was to ensure we selected the most appropriate experts who could contribute to consensus-building and decision-making, and key sector leaders to help guide best practice models as a preparation strategy. A National Roundtable Project Steering Committee was convened by BCNA to guide the design and implementation of the project. Membership included 2 BCNA Consumer Representatives living with metastatic breast cancer and 2 BCNA Consumer Representatives diagnosed with early breast cancer. Project direction was also informed by sector leaders including Professor Sanchia Aranda. The Steering Committee co-designed the objectives and agenda for the roundtable with BCNA’s Project Team and advised on the approach to stakeholder engagement and consensus building.
Many stakeholders across the sector are also calling for reform; for instance, Cancer Council Australia has recently worked with a range of key stakeholders to develop a new cancer data maturity model, which would enable cancer data to be more effectively utilised to monitor the provision of health services and to identify and address inequities in cancer care and cancer outcomes. 10 Several pilot studies are underway to inform methods to capture metastatic breast cancer prevalence and demographics within the data available to the population-based cancer registries. However, despite a decades- long agreement and advocacy by stakeholders about the need for population-level cancer stage and recurrence data, the gap remains, challenging the efforts of governments, clinicians, researchers, non-profits and others to leverage national cancer data to monitor the provision of optimal care and to improve the outcomes of Australians affected by cancer. 3. The Approach: co-designed with people affected by breast cancer On Metastatic Breast Cancer Awareness Day in 2022, BCNA released its inaugural issues paper, Making Metastatic Breast Cancer Count , which highlighted the complex and often unmet needs of people with metastatic breast cancer, and the challenges the lack of consistent stage and recurrence data presents for cancer policy development, health system investment and planning, service delivery and research. 11 This paper also sought to utilise updated modelling to
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National Roundtable Report
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