Australia crafting national cancer data framework

Over the next two years, Australia will be developing a national cancer data framework to enhance data accessibility. 

WHAT IT’S ABOUT

The Australian government is working with the national non-profit Cancer Council Australia to develop the said framework. It will set the strategic direction and priorities for the collection, management, use and ongoing development of comprehensive and consistent health and cancer data.

There are several considerations in developing this framework, including the alignment across the health data ecosystem to enable data sharing and linkage beyond the public health domain; clear governance, quality assurance and system-wide agreement across jurisdictions and the sector on data sharing; and the national agreements on data sovereignty, regulation, governance and sharing across jurisdictions.

WHY IT MATTERS

Cancer services across Australia capture data differently, which hinders the creation of linked datasets nationwide. Data custodians also often have their respective jurisdictional ethics requirements. 

According to Cancer Australia, the country’s lead cancer control agency, having a national cancer data framework that integrates and links data from multiple assets or sources “will enable consistency and comprehensiveness, and improve access and sharing, to inform evidence-based practice and improvements to research and cancer care services.”

“Improved data collection and availability, specific to priority populations, will enhance research and drive continuous improvement of optimal cancer care and treatment for all Australians.”

THE LARGER CONTEXT

Crafting a national cancer data framework is one of the many initiatives outlined in the federal government’s Australian Cancer Plan. Developed by Cancer Australia, the monumental plan aims to improve the prevention, screening, treatment, and management of all cancers for people from all walks of life across the country.  A key and urgent priority of this plan is to achieve equity and enhance the outcomes for First Nations people, who are said to be 14% more likely to get cancer and 45% more likely to die from the disease than their non-Indigenous counterparts.  

The Cancer Plan has six strategic objectives with each setting a 10-year ambition and is further underpinned by two-year and five-year goals, along with their respective set of actions. 

One of these objectives is to build a “modern, fit-for-purpose cancer control infrastructure”, which goals are to develop frameworks for collecting and reporting comprehensive cancer data and implement new technologies into routine cancer care.

It is said that “reliable and comprehensive” health and cancer data is the foundation of optimal cancer care and a high-performing cancer care system. It is essential for informing the planning, delivery and continuous improvement of cancer care and for identifying policy and research priorities across the cancer control continuum. 

In building a modern cancer care control infrastructure, the Australian government will also expand access to digitally enabled cancer care by, among others, investing in scalable new technologies and emerging techniques and creating policy and governance frameworks for developing AI capability for cancer care. The government also intends to raise access to virtual care among Aboriginal and Torres Strait Islander people.

ON THE RECORD

“The burden of cancer is increasing, with more than 164,000 Australians estimated to be diagnosed this year. While cancer outcomes in this country are generally among the best in the world, that’s not true for some people, simply because of who they are or where they live,” Minister for Health and Aged Care Mark Butler emphasised in a media statement.

“Our Australian Cancer Plan responds to patients’ concerns that the health system is hard to navigate and will ensure no one falls through the gaps. Preventing cancer, and detecting and treating it earlier, will save heartache and pain for countless individuals and families, and also take pressure off our hospitals and wider health system,” he added.