BCNA Leads First National Roadmap to Collecting Metastatic Breast Cancer Data
A roadmap to finally count the number of people diagnosed with incurable and life limiting metastatic breast cancer (MBC) is a step closer thanks to the $1.5 million announced over the weekend by Prime Minister Anthony Albanese to fund a cancer data alliance.
Almost two years ago a group of Breast Cancer Network Australia (BCNA) consumer representatives living with metastatic breast cancer told us they feel invisible.
They wanted to be made visible by being counted properly on all our cancer registries across Australia. Currently this data is not consistently collected across all states and territories.
Last November BCNA launched the roadmap to address the lack of national cancer data for those living with MBC at Parliament House, Canberra.
The roadmap was the result of a roundtable that saw experts from across the sector work towards recommendations to improve Australia’s cancer data, which aligns with one of the priorities of the first Australian Cancer Plan, launched last year.
BCNA Director Policy Advocacy & Support Services, Vicki Durston acknowledged everyone who had come together to make this roadmap a reality, including the late Peta Murphy MP who stood with BCNA for many years to have people with MBC made visible through national data collection.
“She would have been so incredibly proud that we are now closer to ensuring that the many thousands of invisible Australians with metastatic breast cancer will no longer be hidden in plain sight,” Ms Durston said.
“We know that cancer sectors in other countries around the world are watching Australia, this is our chance to build on progress being made and to become a world leader in health data.”
This $1.5 million funding to the Australian Institute of Health and Welfare will ensure the formation of an Australian Cancer Data Alliance, which will see state and territory cancer registries supported to work towards routinely collecting cancer stage and recurrence data.
“This Federal Government funding will help the sector pioneer the collection of this important data to inform and drive policy, innovation, planning, treatment and care,” Ms Durston said.
“How can we possibly support this population living with metastatic disease and meet their needs when we don’t know how many people in Australia are living with metastatic breast cancer?
“Today we can begin consolidating a way forward for better quality data not just for breast cancer, but for all metastatic cancers.”
BCNA has been calling for improvements to Australia’s cancer data since 1998 and will today mark this key milestone alongside all those with a lived experience of cancer and their advocates.
Read BCNA’s report Time to Count People with Metastatic Breast Cancer – A Way Forward
Comments
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This is absolutely thrilling news - I am one of many who feel invisible in Australia with MBC - thank you!
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That is wonderful news @Mez_BCNA- it made NO SENSE that after an initial cancer diagnosis, that statistics were NOT kept of those who then developed Mets - as they need those statistics to make informed decisions on future costs and specialist treatments ....
Well done BCNA on flying the flag - Peta Murphy would have been SO thrilled ...2 -
Thank you BCNA.1
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Cant express how proud I am of BCNA’s efforts on our behalf
I brag about this website and the online network all the time
Thank you thank you, thank you for all your hard work2 -
Thanks so much to all the team and BCNA and their supporters who made this happen 👍0
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I have been so surprised to learn this data hasn’t been collected on a national scale. I salute this network’s advocacy efforts and this first step in funding so we can support better research and effectively assist people living with metastatic disease.4
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Thank you BCNA and Peta Murphy (Vale) for bringing this important information out into the open. It really is mind blowing to think Mets patients were not counted.2
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Thank you Mez & BCNA and everyone who make this happen.0
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Update from the manager of BCNA's Policy & Advocacy Team @smillsbcna who led the 'Making Metastatic Breast Cancer Count' project:Since the PM's announcement back in January, the funding has been allocated to Cancer Australia and the Australian Institute of Health & Welfare (AIHW). It will be their joint responsibility to set up the 'cancer data alliance' who will allocate funding the state and territory cancer registries for projects that will help us progress towards cancer stage and recurrence data.
We maintain regular contact with Cancer Australia and AIHW who plan to have the alliance up and running in September, ready to start allocating the funding.
In the meantime, we know this work cannot pause and so we've been working with the individual state and territory cancer data registries to encourage them to get projects ready for funding. There's amazing work being done in Victoria who are now sharing learnings with other states and territories which is great progress and previously there wasn't much collaboration between the cancer registries.
We understand how frustrating the pace must be. The roadmap that BCNA launched is working towards a ten year timeframe for implementation which may seem like an incredibly long amount of time for a seemingly simple request - to know how many people are living with MBC - but it is very complex. We need to see investment in our cancer registry infrastructure, better alignment between hospitals, pathologists, and primary care, improved data governance, and leveraging of new technology like AI. It's all happening, and we're not giving up.
Besides the data issue, we continue to advocate on behalf of those with MBC in a variety of different areas. We recently released an MBC Media Guideline for journalists, we are constantly pushing for earlier access to new drugs and treatments through the PBS, and we're working with various other orgs to increase access to clinical trials for those living with MBC in rural and regional areas.
Happy to answer any other questions and thank you so much for keeping the conversation going! I can also pass onto the team the suggestion to post some regular updates, perhaps quarterly for the time being. I think that is a great idea.1 -
At that
rate of progress I’ll be passed over and my number wont even be recorded. They got computer logging during covid happening pretty fast its amazing how slow some technology takes and other things change over night 😢3 -
Yes, it is a terrible shame it takes so long, too many players, federal, state health, drs, pharmacists, pathology etc etc. I really appreciate the work, but i hope that the people doing this can push out some red tape and look for opportunities to streamline all that process. 10 yrs when you are already diagnosed with mets is no guarantee we will see the changes to be made. This saddened me grately. I really hope I am alive, but the stats might suggest otherwise. Looks like the current people with mets aren't ever to be counted, but I am pleased others will be. In the meantime, keep pushing for new treatments as that's our chance to be alive in 10 yrs.5
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Thanks for the update, such an important piece of work - incredible it doesn’t exist. Huge respect for those living with mets now.0
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I find that hard to believe that it will take 10 years to get sufficient data to track all those with Breast Cancer Mets .... it almost smacks of some sort of 'rorting'? Maybe those running the process should have their salaries halved, so it will take half the time!?
Why is it so difficult collate this info now (or within the next year or 2?)
Is it ALL Mets patients, no matter the cancer type, that aren't being currently 'collated' ... or is it just those with Breast Cancer Mets?
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