BCNA's roundtable in Canberra – Making Metastatic Breast Cancer Count – showed what can happen when key stakeholders who can influence and affect change are brought together into the same room.
Key policy makers, clinicians, cancer sector and data experts and people living with breast cancer came from around Australia this month united in a desire to navigate towards a solution to an obstacle in cancer care they all agreed was unacceptable.
Setting the scene, BCNA's Director Policy, Advocacy and Support Services Vicki Durston said not many people know that people living with metastatic breast cancer in Australia are not consistently counted on our cancer registries.
If you are not counted you are not seen, which means you are ‘invisible’ when health service providers and policymakers plan cancer services and support.
'People with metastatic breast cancer need to have visibility in order for our health system to plan for and invest in this growing population with complex and unmet needs,' she said.
Ms Durston also said the issue is not unique to breast cancer.
'We know that this is problematic across the board, and we hope the recommendations of the roundtable can inform change in data collection and use which is applicable to a broad range of cancer types,' she said.
To see the sector come together like they did with genuine commitment to contribute to meaningful change was outstanding.
Over a day, attendees workshopped and prioritised solutions that could see Australian cancer registries routinely collect cancer stage and recurrence data to help make those living with metastatic disease visible to policy makers and health services.
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 – 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.
Prof. Aranda – who is also the incoming Chair of the Victorian Comprehensive Cancer Centre Alliance and the former CEO of Cancer Council Australia – recognised Australia’s remarkable cancer outcomes, however she noted that the amount of information that you need to understand, particularly survival and mortality has changed, 'and the systems haven't kept up'.
'Breast cancer stage and recurrence data may identify variation in health outcomes and aid improvements in addressing health inequities,' she said.
At the end of the day, Ms Durston said the energy and commitment from policy makers, clinical groups, cancer sector experts and people with breast cancer to work to find a solution had been extremely positive.
'To see the sector come together like they did with genuine commitment to contribute to meaningful change was outstanding sector leadership,' Ms Durston said.
'The participants continued well after the program finished on Wednesday and they went on to come together at dinner and again in Parliament, exchanging contact details and agreeing to partner moving forward.'
'We had representatives from Federal and State and Territory governments thank us for advocating for data – not been done before.'
'There was genuine desire from attendees to continue the momentum we all started at the roundtable.'
BCNA kicked off its Making Metastatic Breast Cancer Count campaign last October with an issues paper.
Recommendations from the roundtable will be released later this year.
*This article does not provide medical advice and is intended for informational purposes only.
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