Time to Count People with Metastatic Breast Cancer - A Way Forward  

So much of our advocacy happens with support from many dedicated health professionals who join us in our efforts to create better outcomes for Australians affected by breast cancer. 
 
This support from many health professionals in our network was again evident in our call for all people with metastatic breast cancer to be consistently counted on our cancer registries. Currently they are not, which means they are ‘invisible’ to health service providers and policymakers planning cancer services and support. 
 
One year ago - on Metastatic Awareness Day 2022 - BCNA released an issues paper, Making Metastatic Breast Cancer Count. 
 
In August this year we held a National Roundtable in Canberra, bringing together leading cancer and data experts to discuss a way forward. 
 
The roundtable was facilitated by Professor Sanchia Aranda AM – one of the world’s pre-eminent experts in cancer control with 40 years’ experience as a clinician, researcher, educator and health-system administrator.  
 
Prof. Sancha said the roundtable aimed at producing short- and long-term recommendations for routine and consistent collection of breast cancer stage and diagnosis and recurrence data in Australia. 
 
“Breast cancer stage and recurrence data may identify variation in health outcomes and aid improvements in addressing health inequities,” Prof. Aranda said.  
 
“The critical message is that we have the capacity, the knowledge, and the tools to improve cancer outcomes today, and equity is probably the most important rationale for changing the data system.”   
 
Attendees – who also included representatives from peak clinical bodies – universally agreed that the time to improve breast cancer information in our cancer registries is now. 
 
On Metastatic Awareness Day 2023 on 13 October, BCNA was proud to release Making Metastatic Breast Cancer Count - A Way Forward. 
 
The two-page summary precedes a full report from the roundtable, which we will be releasing later in the year. 
 
BCNA Director Policy, Advocacy and Support Services Vicki Durston said the roundtable showed what can happen when key stakeholders - who all share a common goal - are brought together into the same room. 
 
Key commitments from the roundtable include: 

• Increasing the funding of resources and staffing at state and territory cancer registries where needed, in order to increase their capacity to collect breast cancer stage and recurrence data.
• Improving the ability of cancer registries to consistently collect the number of people with metastatic breast cancer through improved data linkages with health providers .
• The formulation of data frameworks.
• A new national framework centralising leadership, accountability, and standards for collection of data. 

Thank you to the many health professionals who have joined us in our voice to have people with metastatic breast cancer to be counted. 
 
Read Time to Count People with Metastatic Breast Cancer - A Way Forward. 
 
A full report detailing all outcomes of the roundtable will be released later in November.