5. The need for reform of Australia’s existing processes governing access to health data Throughout the roundtable, attendees stressed the need for urgent reform of Australia’s existing processes around data access. Attendees pointed to the significant time and resources required by researchers and other stakeholders who apply to access existing health data sets for research and other purposes. One attendee described waiting over 3 years to access the health data sets needed for a record linkage research project, and attendees noted that this was the norm.
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Three years later, $250,000 spent on staff and time to actually do this, not including any of my time, and we’re nowhere near that.
Ultimately, there was considerable consensus among attendees that, while enhanced data capture is vital, the benefits of cancer data collection cannot be translated into improved outcomes for Australians affected by breast cancer if access to the data remains so constrained.
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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.
6. The need for the prioritisation and funding of new and enduring health data linkages There was substantial consensus among attendees that health data linkages are critically important if Australia is to achieve national breast cancer stage and recurrence data, as well as improve the outcomes of Australians affected by breast cancer. Health linkages enable data from multiple sources to be connected, enabling new insights about the impact of personal, clinical, lifestyle and other factors on health outcomes. Attendees discussed Australia’s existing national data linkage infrastructure, emphasising the need for new routine and enduring national health data linkages to be established and funded. It was recommended that each of the state and territory PBCRs be provided with immediate access to admitted patient care, MBS and PBS data to enable analyses aimed at identifying breast cancer recurrence. National linkages between CaT-Link1*, the cancer registries, MBS, PBS and admitted patient care data were also recommended.
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National Roundtable Report
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