Breast Cancer Network Australia
Case for Support 2024
Case study: Consumer-led advocacy for cancer data changes in Australia
Our goal: People with metastatic (advanced) breast cancer are not hidden
How your investment can help Building on the success of our metastatic breast cancer issues paper and Roadmap report, we will continue to oversee the implementation of the Australian Cancer Data Alliance to be able to report on MBC and ultimately understand how many people are living with MBC in each state and in Australia. We will also promote the Roadmap internationally and monitor updates about data improvements that impact our consumers and stakeholders. The eyes of the world are watching for the outcomes of our work in Australia.
In January 2024, the Prime Minister announced $1.5 million in support of our priority recommendation from the roadmap report to establish a new Australian Cancer Data Alliance, with BCNA included as a member. The Alliance brings together state and territory cancer registries, led by the Australian Institute of Health and Welfare and Cancer Australia. The Alliance will accelerate progress to support the development and implementation of a cancer data framework. It will ensure state and territory governments work towards improving cancer data collection, analysis, and insights that inform methods to report stage and timing of cancer recurrence for all cancers. This will be a game changer for cancer reporting. Our leadership has not only brought national attention to the needs of people living with MBC but has also set in motion systemic changes that will improve care planning, resource allocation, and treatment development for people living with all types of metastatic cancer. By bridging the gap between decision-making and lived experience, we have made sure that those with MBC are prioritised, heard, counted, and supported.
For decades, people living with metastatic breast cancer (MBC) have been under- represented in Australia's cancer data. This lack of information has hindered efforts to plan and provide appropriate care, allocate resources, and develop targeted treatments for those with MBC. Knowing how many people live with MBC is vital for resource allocation, health system planning, incentivising clinical trials, medication subsidies, and supportive care. In 2022, we worked with a group of consumer representatives to advocate for change to improve the collection and reporting of MBC data across Australia. Together, we published our inaugural national issues paper Making Metastatic Breast Cancer Count , highlighting the urgent need for consistent MBC data collection in cancer registries. Following the release of our issues paper, we convened a national stakeholder roundtable with consumers, academics, the cancer sector workforce and policy makers in August 2023 to understand what changes needed to be implemented. Our national roadmap, Time to Count People with Metastatic Breast Cancer – A Way Forward , was published in November 2023. It outlined recommendations to improve cancer data collection and reporting for people with MBC.
Metastatic breast cancer (MBC) is when breast cancer has spread beyond the breast tissue to other parts of the body. It is treatable but not currently curable and is a life-limiting disease. In our 2022 issues paper, Making Metastatic Breast Cancer Count , we estimated there were at least 10,553 people living with MBC in Australia in 2020. The actual figure is unknown due to inconsistent data collection across every state and territory. Having no national picture about people living with MBC means their voices have often been unheard, misunderstood, or disregarded. Since 1998, we have advocated for improvements in Australia's cancer data to address the complex healthcare needs of people living with MBC and their right to be counted. By launching our metastatic issues paper in 2022, we redoubled our advocacy in this space. The result is the Australian Cancer Data Alliance. This collaborative initiative brings together researchers, clinicians, BCNA consumers and policymakers to improve cancer data collection, analysis, and sharing. This is a world-leading initiative with just one other country currently reporting MBC data. We are proud to have played a significant part in this truly world leading work that will benefit people with all types of metastatic cancer. It demonstrates the strength of our BNCA network and its ability to harness the consumer voice to influence change. Today we are continuing to work in partnership with our consumers who are living with MBC to raise awareness and understanding that their needs are often more complex and currently unmet. Their voices are reflected in everything we do including our range of specialised resources.
Investment opportunity: $50,000
The 'Making Metastatic Breast Cancer Count' panel discussion, Parliament House Canberra, August 2023
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