3. The need for leadership, interjurisdictional collaboration and national minimum data standards, including stage and recurrence data Roundtable attendees stressed the need for the immediate prioritisation, action and investment in Australia’s cancer data system by the federal and state and territory governments, with the new 10-year Australian Cancer Plan regarded as a key opportunity to progress national breast cancer stage and recurrence data. While the complexities of population-level breast cancer stage and recurrence data were acknowledged, attendees stressed that the challenges must not continue to act as a deterrent to action and investment, as national data are achievable if prioritised nationally and across the states and territories. International examples were cited, such as Canada where cancer stage at diagnosis data has been routinely collected by all provinces and territories except Quebec since 2010 for breast, prostate, colorectal and lung cancers, 12 and this data has been utilised by government, health services, clinicians, researchers and other key stakeholders across the country.
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[T]here are other countries who collect this information, it can be done. Australia, with all of its wealth and its desire to do certain things, and it plays as a national or a huge player in the international stage, it can be done. We really need to think through today...what those roadblocks are and just figure out how to bust through them.
There was strong consensus about the need for the establishment of minimum national cancer data standards, which include breast cancer stage and recurrence as core cancer data. While each Australian state and territory government is responsible for establishing the cancer notification requirements in its jurisdiction, attendees emphasised the need for national-level agreement that breast cancer stage and recurrence data must form part of Australia’s minimum national cancer data standards if Australia is to achieve population-level stage and recurrence data. New and strengthened mechanisms for inter-governmental coordination and collaboration were regarded as critical given the goal of national-level breast cancer stage and recurrence data; however, attendees also advised that enhanced mechanisms must be developed to facilitate improved collaboration between governments, Cancer Australia, AIHW, AACR, PBCRs, clinical groups and professional associations, researchers, non-profits and cancer consumers. Such mechanisms were regarded as vital for stakeholders to discuss and reach agreement about data-related issues, such as how cancer recurrence should be defined, and to address the fragmentation of initiatives and research projects that exists across the country. As one attendee noted:
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National Roundtable Report
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