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The benefit to [governments] is that they have a much better idea of how to control their spend, and they have a better idea of how to understand and explain to the taxpayer the benefit of that spend in early disease and metastatic across the whole cost of the care of that patient, and to target those areas that are inequitable.
• The data would provide a more comprehensive understanding of population-level patterns in diagnosis, recurrence and survival, opening up new areas of research, clinical trials and interventions to address variations and inequities in breast cancer outcomes. 2. Data as an asset: leveraging breast cancer data for improved outcomes Many roundtable attendees discussed the need for greater recognition by governments and Australian society more broadly that health data is a key asset to leverage, rather than predominately a risk to manage. While the importance of data governance, privacy and security arrangements were noted, the group emphasised that a balance is required, whereby such arrangements do not prevent or unduly constrain cancer data access, sharing, linkage and use for purposes such as cancer research, health service performance monitoring, workforce planning, clinical trial recruitment, the evaluation of interventions and the analysis of national trends. Australia was characterised as ‘decades behind’ comparable international jurisdictions in harnessing cancer data to develop and evaluate cancer policies, programs and services.
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[W]e have in front of us the evidence that we need to improve the health system, and that means living lives, all of us living our lives in better ways, but we don’t use that data. We’re decades behind.
The need for a cultural change, which would see greater recognition of the value of cancer data capture across hospitals and health services, was also discussed. Attendees highlighted the time and resourcing required for cancer data capture by health services, with some attendees indicating that cancer data capture should be more strongly incentivised by governments and other relevant stakeholders. Other attendees felt that if there was a greater education of healthcare workers across public and private health services about why population-level cancer data collection is important and how it can be harnessed to improve the cancer outcomes of people, this would encourage a greater prioritisation of data capture for cancer notification purposes.
November 2023
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