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The launch of the National Cancer Data Framework marks a significant milestone in Australian cancer care, setting a new standard for how health data is integrated and used across the sector. By ensuring cancer data is collected and reported in a nationally consistent manner, the sector will be able to answer key questions about cancer control, measure adherence to optimal care pathways and identify disparities in cancer care.
Cancer remains one of Australia’s most enduring health challenges. Each year, more than 150,000 Australians are diagnosed with cancer, with more than 50,000 losing their lives — a sobering reminder that cancer touches nearly every family.
While Australia boasts some of the best survival rates in the world and overall mortality rates are declining, this success is not true for every cancer patient and every community.
Significant differences in outcomes persist across population groups, particularly among First Nations people and those in rural and remote areas.
For some time, practitioners have lacked a clear set of indicators to benchmark against national guidelines or assess adherence to optimal care pathways. Without these measures’ inequities go undetected until it’s too late to course correct.
As a result, gaps in data have an impact when it comes to treatment access and outcomes. It’s with this in mind that the absence of a nationally coordinated approach to cancer data and care has become increasingly urgent.
A new national model: how it works
Following broad consultation led by Cancer Australia, in partnership with the Cancer Council Australia, and the Australian Institute of Health and Welfare (AIHW), the Australian Government has launched the National Cancer Data Framework. This initiative, formally endorsed by the Minister for Health and Ageing and state and territory health ministers, reflects the sector’s commitment to delivering lasting change.
The aim is to build a mature and connected cancer data ecosystem, one that supports:
- consistent, comprehensive reporting and benchmarking across all jurisdictions;
- Indigenous Data Sovereignty, ensuring culturally appropriate data governance for Aboriginal and Torres Strait Islander peoples; and
- Actions that improve national and local decision-making, clinical practice, and research at every stage of the cancer control continuum.
The Australian Cancer Plan, the Government’s 10-year roadmap, drives implementation priorities. In practical terms, the National Cancer Data Framework sets out to enhance consistency in national cancer data collection and reporting, improve the timeliness and quality of data and enable easier sharing and access for practitioners and researchers.
The voices behind the vision
Minister for Health and Ageing, the Hon Mark Butler MP, has highlighted the significance of the Framework:
“The National 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 says it’s not just about uniform procedures but about closing the gaps and fostering health equity. By ensuring cancer data is collected and reported in a nationally consistent manner, the sector will be able to answer key questions about cancer control, measure adherence to optimal care pathways and identify disparities in cancer care.
AIHW CEO Dr Zoran Bolevich describes it as a strategic leap forward:
“The National Cancer Data Framework marks 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.”
David Swan, Interim CEO, Cancer Council Australia, has highlighted the stakes for health system efficiency and equity:
“We’re excited to see the coordinated use of health data in Australia as a national priority, to work towards our 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.”
What it means for practitioners
The Data Framework aims to create a comprehensive picture of cancer to improve patient care, inform population health planning and strengthen performance monitoring. It sets out actions to support structured pathology and radiology reporting, ensuring that critical information captured in electronic medical records, such as stage at diagnosis, flows through to jurisdictional and national reporting systems.
The focus is on making data available in a timely manner and addressing key gaps to enable reporting on priority areas, including optimal cancer treatment and care, equity, and patient experiences and outcomes. It’s also about improving accessibility for those who need the data, streamline ethics and governance processes, and ensure that we can answer essential questions across the cancer control continuum.
Next steps
Cancer Australia is leading national coordination of early implementation actions under the Data Framework, working in close collaboration with the sector. Implementation is a shared responsibility across all jurisdictions and the health and cancer sectors more broadly.
The Australian Government is already progressing several activities to deliver the Data Framework’s actions with existing funding. This includes working with the Movember Foundation on the Pan Cancer Project, integrating patient-reported experience and outcome measures (PREMs & PROMs) nationally across the cancer care sector. Work is underway with the AIHW on improving national cancer and screening data. Future funding to achieve the Data Framework’s goals will be a decision for all governments.
We know that challenges remain, such as upgrading legacy systems and harmonising privacy and access rules. Targeted training to ensure data is used effectively across all regions will take time and coordinated investment. Ongoing and regular engagement with clinicians, IT teams, and patient advocates will be essential to its success.
This focus on patient-reported outcomes and experiences also recognises that data is, ultimately about people not just numbers. Feedback and engagement from primary care, hospital and research communities will help ensure the promise of connected and meaningful cancer data is realised and becomes a lasting reality.
Practitioners are encouraged to explore the Framework, by visiting Cancer Australia’s website.
Professor Dorothy Keefe PSM MBBS, MSc, MA, MD, FRACP, FRCP(Lon) is CEO of Cancer Australia and an honorary Clinical Professor in the School of Medicine at the University of Adelaide.
The statements or opinions expressed in this article reflect the views of the authors and do not necessarily represent the official policy of the AMA, the MJA or InSight+ unless so stated.
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