Keep funding our national cancer data registry or watch all that work go down the gurgler, advocates warn.
Cancer researchers, epidemiologists and patients are calling for urgent funding and upgrades to cancer registries to track patient data, warning that without continued data tracking, patients will be left “invisible” to governments and health services.
The multi-jurisdictional cancer registry would continue to provide essential data on cancer patients and their cancer stage, preserving patient data across all cancer types.
The Australian Cancer Data Alliance, a group of 40 cancer epidemiologists, researchers and consumers – who have been volunteering their time working on the cancer registry – are calling for funding so state and territory data registries can be upgraded and maintained.
Breast Cancer Network Australia (BCNA) director of policy and advocacy, Vicki Durston, said the states had agreed to contribute 50% of funding and the Australian Cancer Data Alliance were calling on the federal government for the remaining $2 million per year for three years.
“Right now, they don’t have any funding to commit to it. This will be millions of dollars of work down the gurgler, and it will take us back 10 years,” she told Health Services Daily.
“You can’t plan for a population you can’t see, and right now we’ve got four states and territories at their end of their life cycle.
“It won’t need infrastructure change again. It will just need a software upgrade. This is designed to future-proof cancer data in this country.”
Ms Durston said people with cancer who were not captured by data were “invisible” to governments.
“They’re invisible to state-based planning because they’re not in the data, and when they’re not in the data, they’re not seen, and then they’re not prioritised or cared for.”
Ms Durston said Australian cancer registries and databases were built in the 1970s to capture incidence and mortality – diagnoses and deaths – but the data did not reflect improved survival rates.
“With the advancements in treatment and the way that we understand cancer now, … our survival rates are improving, treatments are changing and evolving.
“Our cancer registries have not kept pace, and so a lot of our state-based cancer registries have come to the end of their life cycle.”
Related
People were also living with more advanced disease, which was not captured by data systems, Ms Durston said.
“We only capture when someone’s diagnosed and when someone dies, but we know that some people can live with stage four for 20, 25 years.
“But we don’t know who they are. We don’t know where they live. We don’t know how long they’re living for.
“We don’t know how long they progress from stage to stage, and we didn’t know who they were with metastatic breast cancer.”
Ms Durston said Cancer Australia had identified strengthening cancer registries as one of the fundamental priorities in cancer planning for Australia.
The Labor MP Peta Murphy, who died from breast cancer in late 2023, campaigned for better tracking of breast cancer patients.
In recognition of Ms Murphy’s advocacy, Prime Minister Anthony Albanese committed $1.5 million in funding in 2024 to scope a multi-jurisdictional cancer registry.
While estimates put the number of people living with metastatic breast cancer in Australia at 10,500, Ms Durston said data gathered as part of that research showed that there were more than 20,000 people.
“It was nearly double the original estimates,” she said.
“That also highlighted that we didn’t just want to see that done as a one-off. We wanted to ensure that the cancer data that comes out every year is robust data with all that information.
“We could have one database that could be applied to every state and territory. We did that work, and now it’s implementation time.”
Ms Durston said while some states such as NSW and South Australia had good cancer registries, the Northern Territory was working out of Excel and relying on broken computers.
“We’ve got commitment from the states to now implement this, but we need the government to not lose sight of this and get it done.
“We will continue to all volunteer our time in kind. There have been millions of dollars in kind given to this work because we don’t want to see it fall over. It’s just too important.
“What we had done in metastatic breast cancer could now be translated into other tumour types – we’re looking at metastatic lung; we’re looking at metastatic melanoma.
“We also need to implement this new data registry across the country that will be consistently reporting the same thing with the depth of what we need in order to inform policy and cancer planning around the country.”