Introduction: In Australia and internationally, people diagnosed with metastatic breast cancer (MBC) report feeling overlooked, even invisible. A key issue contributing to this ‘invisibility’ is that population-based cancer registries are not required to collect stage at diagnosis or recurrence data; consequently, the prevalence of MBC in Australia is unknown. Accurate prevalence data is a necessary indicator for surveillance, treatment, and supportive care.
Aims: To explore options for the reporting of national MBC prevalence
Methods: Interviews were conducted with key sector stakeholders. A 2-day in-person Roundtable to workshop recommendations identify priorities identified and establish timeframes referencing the national Australian Cancer Plan.
Results: Participants (interviews: n=19; Roundtable: n=41) agreed that cancer data in Australia must be framed as an asset for use as opposed to a risk to be managed. Challenges identified included funding, infrastructure, and state and territory jurisdictions). Recommendations included the need to establish an alliance to drive and unify work relating to national minimum standards of data collection, additional funding for the smaller state and territory cancer registries, prioritising new and enduring health data linkages, trialling of innovative approaches such as federated learning, and enabling sharing of health data. Longer-term recommendations included the establishment of a national cancer data framework and investment in electronic structured reporting.
Conclusion: Several actions were identified to address current gaps in registry stage and recurrence data and facilitate reporting of MBC prevalence in Australia. The Roundtable outcomes roadmap received bipartisan recognition and the Australian Government committing funds to form an Australian Cancer Data Alliance, supporting state and territory cancer registries to work towards routinely collecting stage and recurrence data.