The new National Cancer Data Framework promises clearer, connected data to drive better, fairer cancer care.
Australia has taken a decisive step to transform the nation’s approach to cancer control with the launch of the National Cancer Data Framework.
The new initiative is designed to overhaul how cancer information is collected, connected and used to improve outcomes and save lives.
Developed by Cancer Australia in partnership with Cancer Council Australia and the Australian Institute of Health and Welfare, the framework sets national priorities and a unified strategic direction for strengthening the quality, consistency and accessibility of cancer data.
It is a central commitment of the Australian Cancer Plan, which was launched two years ago.
Despite Australia’s strong record in cancer treatment, gaps and inconsistencies in data reporting have long hindered efforts to build a complete picture of cancer control.
The new framework provides an integrated, nationwide approach that brings together health systems, screening registers and cancer registries. This alignment is expected to improve collaboration, support targeted research and shape more effective policies and services.
A foundational element of the Framework is its emphasis on Indigenous Data Sovereignty. By embedding principles that recognise the rights of Aboriginal and Torres Strait Islander peoples to govern the collection and use of their data, the initiative supports self-determination and aims to drive better, culturally informed responses to longstanding disparities in cancer outcomes.
The new Cancer Data Framework has been developed in consultation with all states and territories, First Nations communities, clinicians, researchers, people affected by cancer and support organisations.
And it has been formally endorsed by the Minister for Health and Ageing and every state and territory health minister.
Cancer Australia CEO Professor Dorothy Keefe said better connected cancer data would “transform how we understand and address cancer”.
“The National Cancer Data Framework provides a clear direction to enhance the quality, consistency and accessibility of cancer data at every stage of the cancer control continuum,” she said.
“By enabling us to identify gaps, measure progress, and respond swiftly to emerging challenges, Australia’s health systems will have a comprehensive view of cancer care, ensuring that no one is left behind.”
Professor Keefe told Oncology Republic it was fitting the announcement would come around the second anniversary of the launch of the Australian Cancer Plan.
“When you list the things we’ve achieved, it’s extraordinary,” she said.
“We always were determined to implement it. And what I find so interesting is that when I issued that invitation to the sector to partner with us to do it, the sector said yes. And they’re all collaborating because they want to.”
Professor Keefe said the importance of a national data framework could not be underestimated, as it was a lynchpin to understanding where to deliver the right care at the right time to the right person.
“We have some of the best cancer outcomes in the world in Australia, and we can tell you that at a high level, but we can’t dig down into it and really understand all of the reasons why,” she told OR.
“Clearly, having universal health coverage and the health system we have is vital, but unless we actually capture the data and share the data and use it wisely and safely, culturally safely, and with people’s permissions, unless we do that, we can’t aggregate it all and use it for the benefit of everyone.”
High-quality connected data would also provide solid foundations for attracting funding for research, whether it be for new treatments and drugs, or treatment methods and guidelines, Professor Keefe said.
She conceded the topic of data might not be “sexy”, but it was a cornerstone of the national cancer plan.
“It’s the engine without which we can’t do all the rest,” she said.
“So we have the Australian Comprehensive Cancer Network that’s linking everything across the whole country. We’ve got the optimal care pathways that are well on the road to being implemented across the whole pathway, and the navigation program, and all the work that we’re doing in Aboriginal and Torres Strait Islander affairs.
“All of this needs data gathered in a secure and meaningful way across that network.”
Professor Keefe paid tribute to the states and territories and the whole sector for its embracement of the framework. In fact, many had implemented it well before the official launch last week.
“They’ve already started tweaking what they’re doing to get things moving. And that’s, that’s brilliant to see,” she said.
Australian Institute of Health and Welfare CEO Dr Zoran Bolevich said the launch marked a significant step forward in strengthening Australia’s cancer data.
“By providing a clear roadmap for action, the Framework will enable better insights to inform and help improve cancer prevention, treatment and outcomes for all Australians,” he said.
Federal health minister Mark Butler agreed.
“Improving cancer data is a whole-of-sector responsibility. The Cancer Data Framework will drive data-informed decisions in patient care, service delivery and research throughout our cancer care system, leading to better outcomes for all Australians affected by cancer,” he said.
Cancer Council Australia’s interim CEO David Swan said it was exciting to see the coordinated use of health data in Australia as a national priority, to work towards the vision of a more efficient and cost-effective health system and close the gaps in cancer outcomes hampered by poor availability and accessibility to data.
“We look forward to working with the Australian Government and the cancer care sector on delivering high-quality, scientific evidence that facilitates improved cancer outcomes in Australia with real-time health system monitoring and population health research,” he said.
“By addressing data barriers, we can look forward to a more equitable cancer healthcare service for all Australians.”
