Optimal cancer care and a high performing cancer care system is built on access, use and sharing of reliable and comprehensive health and cancer data across all care settings (both public and private). This is critical to informing the planning, delivery and continuous improvement of cancer care and identifying policy and research priorities across the cancer control continuum. An innovative, future-focused cancer control system should be informed by data, driven by research, and enabled through technology.

The segmented structure of the Australian health system, the delivery of cancer care across public and private systems and other structural and legislative factors, including multiple data custodians responsible for different data sets often with individual jurisdictional ethics requirements, challenge the ability to create a nationally consistent view of cancer control.

Data across the cancer control continuum are captured differently across cancer services, primary care services including Aboriginal Community Controlled Health Services, the National Cancer Screening Register, Australian Cancer Database, and other jurisdictional registries, challenging our ability to create linked datasets.

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. The framework will set a strategic direction and priorities for the collection, management, use and ongoing development of comprehensive and consistent health and cancer data.

This 2-year action recommends the development of an agreed national cancer data framework. In achieving this action, consideration may be given to:

• indicators to monitor optimal and equitable care through networked cancer services including the uptake of OCPs
• an agreed minimum cancer dataset that can be expanded upon to ensure comprehensive and consistent approach to data collection by states and territories, and public and private entities
• routine collection of patient experience, quality of care and quality of life data across the cancer care continuum (e.g., Patient Reported Experience Measures and Patient Reported Outcome Measures)
• alignment across the health data ecosystem to bring together different data sets (e.g., MBS, PBS, and other health data, public and private hospitals, and other providers) with a goal to enable data sharing and linkage beyond the public health domain. This could involve partnerships with health service providers and research organisations
• clear governance, quality assurance and system-wide agreement across jurisdictions and the sector on data sharing
• assessment of immediate and longer-term cancer care outcomes, shifting from episodic assessments of cancer data towards longitudinal views in cancer control
• data sharing through multidisciplinary cancer care touchpoints and reduced inter-jurisdictional barriers to facilitate patient care across healthcare systems
• accessibility to relevant policymakers and researchers to enable accelerated translational research to sophisticated clinical trials
• collection, management and use of Aboriginal and Torres Strait Islander data will be carried out in accordance with the principles of Indigenous Data Sovereignty and governance
• national agreements on data sovereignty, regulation, governance and sharing across jurisdictions to ensure clear and appropriate accountability of personal and population-level data from various cancer data sets. For further information see Action 4.2.4 Establish Aboriginal and Torres Strait Islander-led initiatives which strengthen Indigenous Data Sovereignty and governance of cancer data.

Successful implementation would require jurisdictional and sector agreement on data sharing arrangements as well as successful implementation of Action 3.2.2 Develop a national framework for networked, distributed comprehensive cancer care, to facilitate provision of services as close as safely possible to where patients live. This will include the role of Comprehensive Cancer Centres to enhance patient outcomes, strengthen transparency and accountability, and drive continuous improvements, for all patients across the network regardless of where the care is provided. Learnings on how to reduce the impact of these barriers could also be taken from other data sharing programs at the CSIRO, the AIHW and the Australian Digital Health Agency.

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.