Without population-level breast cancer stage and recurrence data, it is not possible to know how many people are living with metastatic breast cancer across Australia, nor where they live, their age and other demographic and clinical factors that may impact their diagnosis and outcomes. It is not possible to identify, analyse or track population-level trends in late breast cancer diagnosis, to understand the impact at a population level of improved diagnostics and treatment on recurrence and post-metastatic survival, or to understand who across the country may not be receiving optimal care. While modelling can provide estimates of metastatic breast cancer prevalence, such estimates are unlikely to represent the true number of people affected by metastatic disease. This is because development in genomic testing, new drugs and directed therapies, mean people with metastatic breast cancer are living longer than in past decades, which is not reflected or updated in pre-existing models. 5 Cancer Australia’s 2008 National Cancer Data Strategy for Australia also cautioned that the use of modelling must not ‘impede the collection of metastatic breast cancer data’ as such data is vital for ‘outcome monitoring’ and research. 6 In recent years, the need for enhanced national cancer data to inform policy, service design, health workforce planning and budget allocation has become particularly pressing. The COVID-19 pandemic caused significant disruptions to cancer screening, diagnosis, treatment and supportive care services and raised
concerns about the impact of delayed and late-stage cancer diagnoses on the health outcomes of Australians diagnosed with cancer. 7 The ongoing impacts of the COVID-19 pandemic, such as reduced screening, will continue to increase later-stage cancer diagnoses and place further pressure on health services across the country. 8 Population- level breast cancer stage and recurrence data would also enable evaluation of screening and early detection initiatives as well as the faster assessment of new tests and treatments that may benefit Australians affected by breast cancer. Ultimately, the smarter, more effective use of cancer data, including population- level breast cancer stage and recurrence data would enable improved clinical, psychosocial and supportive care outcomes for people affected by breast cancer across the country. The need for reform of Australia’s approach to cancer data collection, collation, reporting, use and linkage has been highlighted in the new 10- year Australian Cancer Plan. In the Plan, cancer data is identified as a key pillar underpinning the provision of optimal cancer care and an important asset that will improve the outcomes of Australians affected by cancer across the country. In 2015, Cancer Australia undertook the Stage Treatment and Recurrence (STaR) project to explore different methodologies to collect national cancer stage information, and Cancer Australia has emphasised the importance of such data to identify national variation in stage of diagnosis and patterns of cancer recurrence. 9
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