Australians should have access to the best research and treatment, wherever they are.
Launching the Australian Comprehensive Cancer Network in Sydney this month, federal Health Minister Mark Butler said Australia’s health system was “not a well-connected system”.
The network aims to bring together cancer resources and data from around the country to ensure everyone shares in what he described as “not just among the best [outcomes] in the world but the best in the world”.
But “not everyone gets access to that best,” he said.
“We should be able to deliver that in a country as wealthy [as us], with a healthcare system as good as ours, with a medical workforce as talented and as well trained as ours. Every cancer patient should have access to that gold standard. And what that requires is better networking,” he told the room full of cancer clinicians, administrators and survivors and those watching virtually from around the country.
The ACCN portal is now open for any Australian cancer organisation, public or private, to join, with a consumer portal to be added.
The network will be self-governed, with comprehensive cancer centres and centres of excellence acting as anchors. No accreditation would be needed to join, as that was “not the Australian way”, said Cancer Australia CEO Professor Dorothy Keefe.
“We really do want everyone to be involved … we want everyone to link together and collaborate. It’s not about competing. It’s like a giant community of practice where everyone holds everyone else to account,” she said.
The network was intended to be open within two years but has taken just six months.
“The vision of the 10-year plan is that Australia will have a fully integrated and inclusive network of comprehensive cancer care across the nation, in which every patient, wherever they may be, is linked to the best evidence-driven prevention, research, diagnostics, treatment and support, for whichever cancer they have, as close to home as safely possible, so that their cancer is found early, they receive the best possible cancer treatment, and they feel cared for,” said Professor Keefe.
But she said if that equity was not achieved, particularly for First Nations peoples who have higher incidence and mortality from cancer, then the Cancer Plan was “a waste of time”.
Data sharing was a central focus of the network, and something which Australian cancer clinicians were grappling with in an exemplary way, Mr Butler said.
“One of the things that really struck me as I came back into the healthcare portfolio was just how poorly a sector populated by the smartest people in the country that spends many, many hundreds of billions of dollars over a period of time, how poorly it performs on digital health, particularly interoperability,” he said.
The event showcased examples of systems from around the country of data collection, sharing, and use, patient navigation, culturally safe care, nationwide access to highly specialised care, benchmarking, evaluation, clinical trials and optimal care pathways.
Equitable access to genomics and access to testing, data and personalised medicine is another focus of the plan, “because genomics is the next big thing in cancer”, said Professor Keefe. The showcase highlighted a national network that exemplifies how it could be done.
Paediatric oncologist Dr Richard Mitchell from the Kids’ Cancer Centre described the Zero childhood cancer program, a national personalised medicine platform available to every child with cancer in Australia. They amass large datasets, collaborate far and wide, translate cutting edge research into personalised treatment, and bring together multidisciplinary expertise around the country to advise on personalised treatment for every child, no matter where they are.
“This is a truly national program, it is a national workforce,” said Dr Mitchell.
But “it doesn’t fit in the health system anywhere,” he said. The program is currently funded by a MRFF grant and by philanthropy.
“We have to prepare the health system; we have to do the health economics. How is this going to work long term?” he said.
Professor Tracey O’Brien, NSW chief cancer officer and CEO of Cancer Institute NSW, highlighted the state’s monitoring and evaluation Reporting Better Cancer Outcomes program, which involves public and private cancer organisations statewide and involves over 700 senior members from various disciplines participating in advisory groups.
“Cancer doesn’t happen in a bubble. We have to acknowledge that it happens in larger health systems. I think tapping into all leaders of an organisation to drive change is the secret sauce,” she said.
The system collects many data sets, including lead, real time and lag data.
“We don’t have to wait for the perfect data set to answer all the questions about care. If we do, miss out on opportunities to improve and gain further insights,” she said.
The institute holds more than 50 meetings a year with private and public sector CEOs. Performance reports are fed back to organisations so they can benchmark performance and facilitate sharing knowledge with comparable organisations, said Professor O’Brien.
The system is mindful of not doubling up on collection or collecting data that’s not useful. There is also a mechanism to link data sets and make them available for research, and, shortly, a move to a single patient digital record.
“Data collection is absolutely meaningless without translation into actionable intelligence, and this requires frontline expertise and interpretation,” said Professor O’Brien.
For example, the data was able to show that women with mental health issues were 43% less likely to participate in breast screening and 26% less likely to have cervical screening.
“That translates to 16,000 women missing out,” she said, adding that this has led to initiatives specifically addressing these women.
Professor O’Brien’s response to the most asked question in the Q and A session, whether Australia needed a deep cancer registry at the national level, was no.
“I think we need a way to better share data at a national level. I don’t think we need to reinvent the wheel and come up with an elaborate new data set,” she said.
“We all collect data within our states. The thing to figure out is what data needs to be shared, what data is useful to share quickly and reduce some of those barriers.
“NSW doesn’t have a perfect system, I’m the first to admit that. But we do have some robust processes that can tangibly demonstrate improvement and strong sector-wide engagement, and we’re keen to share and plug into the national framework.”
The showcase also highlighted a model of a culturally safe way to delivery optimal care pathways for Aboriginal and Torres Strait Islander people in South-East Queensland.
Mr Kaava Watson from the Institute of Urban Indigenous Health and Associate Professor Glen Kennedy from Metro North Hospital and Health Service described the work of their network, comprising 19 clinics and servicing 110,000 people across the region, encompassing five Hospital and Health Services and four Primary Health Networks.
IT was formed at a time when there were two “well-intentioned, really important pieces of policy” – the refreshed Closing the Gap policy, and state-based health equity policy, said Mr Watson.
“But in some respects, we were going towards something that often happens – a deepening of the trenches, if you will, in a fragmented health system,” he said.
The resulting South-East Queensland First Nations Equity partnership committee works with all the CEOs and chairs from the HHSs and PHNs, all the community controlled health services in that region.
“We’ve tried to source, collate and analyse First Nations specific cancer data so we can develop pathways and … cut through the system red tape to actually make a difference,” said Professor Kennedy.
One of the many examples of the way the network has made a difference is in cervical cancer services for Indigenous women. The data collected showed that screening rates were high, even on par with non-Indigenous rates. What was needed was diagnostic pathways and services for women who screened positive. The network organised for gynaecologists to perform colposcopies in communities and defined lists every month for women who tested positive to have diagnostic procedures.
“We cut through that referral, staging pathways where people were getting lost. And then when we create those services, we can create a whole support structure around them, with support for transport, for pre care and post care, etc. It’s had high rates of success and attendance and it’s following a platform for how we can actually roll out this model into the other HHSs across our health equity partnership,” said Professor Kennedy.
“I think we can and should replicate what we’re doing across the country. It does require leadership. That leadership can and should happen anywhere in the country.”
Many other examples of existing networks and projects were highlighted on the day, including the Victorian optimal care summits, the Victorian Comprehensive Cancer Centre Alliance, the Regional Trial Alliance, the Australasian Gastro-Intestinal Trials Group, Cancer Alliance Queensland, the work on lung cancer optimal care pathways at Canberra Region Cancer Centre, patient navigation work being done at Flinders, among others.
“What’s been clear is the Australian Comprehensive Cancer Network appears to be, in the words of Tolkien, the one ring that binds them all. It is the thing that holds the whole implementation of the Australian Cancer Plan together,” Professor Keefe concluded.
“If we took each of the initiatives that was discussed today … and made them all national, what a fabulous system we would have. That’s the vision of the Australian Cancer Plan. That’s what the Australian Cancer Network is about.”
With several hundred people gathered together, many of whom were having a rare day away from the front line of cancer care, the question of workforce inevitably came up several times, with reference to growing a First Nations workforce, the acknowledgement that there would never be enough people, that that innovation, flexibility and working to the top of scope of practice were essential. The network could provide opportunities to “re-engineer”, Professor Keefe noted.
