Introduction 1. About this report
identified by attendees as needed to progress national breast cancer stage and recurrence data capture and reporting. It also details key findings from a pre-roundtable survey BCNA conducted with attendees to explore key barriers, enablers, opportunities and potential solutions in the lead up to the roundtable to ensure the event was action-oriented and solutions-focused. 2. W hy now? Harnessing cancer stage and recurrence data for improved breast cancer outcomes It has been widely recognised that Australia’s lack of routine national breast cancer stage and recurrence data hampers the efforts of Australian governments and health services to plan for, and meet the complex physical, psychosocial and supportive care needs of people living with metastatic breast cancer resulting in poorer outcomes. These data would also allow analysis of the quality of care and assessment of factors to determine variations in cancer outcomes. This has long been a priority for BCNA’s members, who also report this lack of data contributes to feelings of ‘invisibility’ among individuals diagnosed. 3 While all Australian states and territories have a population-based cancer registry (PBCR), the registries’ primary role when established was to collect data about cancer incidence and mortality. As a consequence, Australia’s PBCRs do not routinely capture cancer stage and recurrence data. 4 This issue is further explored by BCNA in its 2022 ‘issues paper,’ Making Metastatic Breast Cancer Count.
On 2 August 2023, Breast Cancer Network Australia (BCNA) convened a national roundtable in Canberra to progress the longstanding recommendation that breast cancer stage and recurrence data be routinely collected and reported across all states and territories to enable national level breast cancer stage and recurrence data. 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 roundtable brought together 41 representatives from the federal and state and territory governments, Australia’s population- based cancer registries, Cancer Australia, the Australian Institute of Health and Welfare, representatives from professional associations and Colleges, non-profits, researchers, health professionals, breast cancer consumers and other relevant stakeholders. The roundtable aimed to build consensus among attendees about short-, medium- and longer-term actions which would enable routine collection, collation reporting and use of cancer stage and recurrence data across Australia. The roundtable also aimed to develop a call to action to inform future federal, state and territory government policy and funding priorities regarding the collection, collation, linkage and use of cancer data, as well as identify areas where further research and/or advocacy is needed. This report summarises the discussions from the roundtable and key actions
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National Roundtable Report
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