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I hear a lot of these things and I think, ‘Oh, we tried that and it didn’t work,’ or, ‘We know how we can do that.’ [T]here’s no sharing, there’s no ability for people to learn off each other.
Recent advances in technology relating to data capture, collation, analysis, linkage and access were also highlighted, with attendees discussing the opportunity available to Australia to harness innovation to design an integrated cancer data system that will serve Australia now, but also well into the future.
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As much as Australia may be a little bit behind, I think now is the opportunity for Australia to say, ‘How do we leapfrog forward? How do we perhaps go beyond what...other jurisdictions have been doing for 20 or 30 years, and really make it cutting edge? How do we make it worthy of our implementation that’s going to hold us for the next decade or so?’ I think that that is an opportunity.
4. Cancer registries as a key vehicle for change Throughout the roundtable, attendees stressed the importance of Australia’s state and territory PBCRs as a key vehicle to enable national-level breast cancer stage and recurrence data. The AACR was noted as a key collective representing the registries in driving this change. Across the day, the depth of expertise and commitment of the cancer registries to cancer data collection, collation, analysis and reporting was underlined. Yet despite the vital role of cancer registries in achieving population-level cancer data, many attendees felt that the value of registries has not been sufficiently recognised by governments or the broader health sector, as evidenced by the significant resourcing constraints many of the registries operate under. ...None of us have any resources to do it and we’re all pretty much cobbling together our registries on very limited resources as it is. So, whilst we are really, really keen, we really need to get some support...We fight for our funding every year. Most of us have a large temporary workforce that we also employ to just keep going. At the roundtable, several attendees posited that progressing routine breast cancer stage and recurrence data capture by some of the more well-resourced state and territory cancer registries may be an important first step; however, the need for nationwide breast cancer stage and recurrence data collection, collation and reporting was stressed if Australia is to ensure that all people affected by cancer have access to optimal cancer treatment and care. A number of attendees noted that Australia- wide data is constrained by the cancer registries with the most limited funding and capabilities, which is therefore an issue that all states and territory governments and the broader cancer sector must together address.
November 2023
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