Data Connect: changing the way things are done with cancer

Some people were having multiple visits to GPs before this rare tumour was picked up. But that will now change due to this one thing, which will have a huge impact on healthcare.

Finding, treating and even curing cancer may prove to be a numbers game if the team behind Victoria’s unique Data Connect has its way.

As it prepares to mark its second anniversary, the collaboration between the VCCC Alliance, University of Melbourne, GPs, hospitals and the state government is already changing the course of the complex disease that claims over 50,000 Australians every year.

VCCC Alliance CEO and leading melanoma oncologist and researcher Professor Grant McArthur described the concept as the future of healthcare.

“The future of healthcare is integrated and linked sophisticated health data to drive even better outcomes and early detection of cancer,” he said. “It is absolutely clear the earlier you detect cancer, the better outcomes and the more lives saved.”

For the first time in cancer research in Australia GP and hospital clinical data has been linked, bringing unique opportunities and insights into key aspects of cancer care.

At its heart the “research incubator” is a treasure-trove of information.

It contains the de-identified data from 130 million anonymous records collected from around three million Victorian cancer patients over almost a decade.

Professor McArthur says its early success shows the potential for it to become a national research tool.

Data Connect co-chair Professor Jon Emery said it was the first time in cancer research in Australia that GP and hospital clinical data had been linked, and this was bringing unique opportunities and insights into key aspects of cancer care.

“It has the potential to make a real difference to patients’ experiences, and to health policy and guidelines,” he said.

Professor Grant McArthur, executive director of the VCCC Alliance, says Data Connect is the future of healthcare. Image: Supplied

“Connecting healthcare data … is essential to understanding the factors that contribute to later cancer diagnosis and treatment, affecting patient outcomes and ongoing health issues.”

Professor McArthur said the information collected was from all stages of a person’s cancer journey.

“From a person at risk of cancer, then diagnosed and then treated, there’s very accurate data on the whole journey documented with high quality informative data,” he said.

Professor McArthur said an innovation component was trying to detect cancer earlier and understand who was at risk. This also helped to develop future guidelines.

“It is very powerful for health professionals to understand when they can intervene to get an earlier diagnosis,” he said. “Clinicians also want to see how the (health) system is performing and what they can do to improve it.”

Professor McArthur said the data tool was also helping to develop guidelines to guide the way people should be treated.

University of Melbourne's Dr Meena Rafiq is one of the researchers using Data Connect to study earlier detection of cancers in general practice. Image: Supplied

In less than two years the VCCC Alliance Data Connect has also helped:

SARCOMA: By working on clinical ways to improve awareness, earlier detection and earlier investigation of this rare tumour after discovering some patients were having multiple visits to GPs before diagnosis.

COMMON CANCERS: such as colorectal cancer. Data collected has highlighted the performance of the health system and opportunities for monitoring onset of symptoms and early warning signs to help diagnose it earlier.

TESTING: Looking at patterns of results from commonly ordered blood tests that could provide early warning signs for lung and colorectal cancers.

LUNG cancer: the first study to document the length of the journey that patients experience in the Australian healthcare system for lung cancer diagnosis and treatment and the effects on survival.

In a message on World Cancer Day this month Catherine, The Princess of Wales said: “Don’t forget to nurture all that which lies beyond the disease”. (Photo by Chris Jackson/Getty Images)

Professor McArthur said what the VCCC Alliance championed was the integration between research and education.

“It’s not good enough to do some research and identify a problem and maybe a solution. You need to get that information out there for all healthcare professionals,” he said.

“At the VCCC Alliance we have leaders in each of our tumour subtypes that get involved in the Data Connect projects to help inform, understand outcomes, think about interventions and then feed into potential education programs to change the way things are being done.”

The big picture, he said was to see continued funding from the Victorian Government for Data Connect and similar data linkage projects nationally.

“Even beyond cancer, because there’s a lot of potential for similar approaches to be taken in other illnesses, particularly the chronic illnesses that carry so much burden of disease in our community,” Professor McArthur said.

When it comes to beating cancer, he says researchers have to stay at the front of the pack and keep innovating.

“Because, you know, that’s what Australians deserve and why Victoria is a world leader in cancer research.”