Key recommendations Priority 1. Fund an Australian Cancer Data Alliance - That the Australian Government formalise and fund the Australian Cancer Data Alliance to implement the program of work related to establishing and implementing national minimum standards of cancer data collection, including national cancer stage and recurrence data. Approaches should be trialled in relation to breast cancer in the first instance, with insights applied to national stage and recurrence data capture of other cancer types. Breast cancer has a long history of leading the way, with considerable interest and momentum for this change. Several breast cancer stage and recurrence data specific pilots are also currently underway, which can inform change. Representation should include the Australian Government, the state and territory governments, Cancer Australia, AIHW, the AACR and representatives from the state and territory cancer registries, Cancer Council of Australia, the clinical colleges such as the Royal College of Pathologists Australasia and professional associations, health services, relevant data custodians, cancer consumer organisations including BCNA, researchers and cancer consumers.
Short-term recommendations 2. Increase investment in state and territory cancer registries - That state and territory governments increase investment of funding to their respective cancer registries, as required, to ensure all state and territory cancer registries have the resources to enable the routine collection, collation and reporting of breast cancer stage and recurrence data. 3. Australasian Association of Cancer Registries - That the AACR undertake an assessment of the state and territory cancer registries’ ability to collect and/or identify breast cancer recurrence from routinely collected health data. 4. Prioritise and fund new and enduring health data linkages - That the Australian Government, in collaboration with the AIHW, Cancer Australia, the state and territory health departments and other relevant stakeholders, prioritise and fund new and enduring health data linkages.* As a matter of priority, all state and territory cancer registries should be given immediate access to admitted patient care data, PBS and MBS data, and any information from oncology information systems and multidisciplinary team meetings.
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National Roundtable Report
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