• While federal, state and territory cancer policy and plans may highlight the importance of integrated cancer data, funding is not always attached to enable implementation of activities. Key governance, legislation and policy-related barriers Attendees characterised the legislation regarding cancer notification requirements and data access processes as a ‘complex landscape’. Processes to access and use cancer data for research and other purposes are resource intensive and time consuming, with one attendee sharing that they applied to access data 3 years ago for a record linkage project and were ‘still only partially in the queue to actually get the data’.
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I think there really does need to be a wake-up call around how we access this data and how that functions in Australia, if we really want to use this data to drive the system forward.
Other attendees noted that current arrangements result in duplication of effort, as research groups working on similar projects must apply separately to access the data and are constrained in what can be shared. Other challenges discussed included: • A crowded health policy agenda and number of challenges facing the health system makes the prioritisation of cancer stage and recurrence data by the federal, state and territory governments difficult to achieve. • The significant time and resources required to change legislation, even if agreement is reached about the need for legislative amendment. • Difficulties arising from the lack of national agreement regarding how ‘cancer recurrence’ should be defined, though several attendees noted that a definition could be developed solely for data collection purposes.
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[T]he definition can be just used for that legislation. It doesn’t have to then apply across to clinicians… [I]t can be just simply a purpose orientated piece of legislation that defines recurrence just solely for data collection.
• Complexities arising from the number of different audiences and users of cancer data, which must be considered by any legislation and/or policies developed.
November 2023
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