A project allowing cancer researchers to uncover delays to cancer diagnosis and identify windows of opportunity to detect tumours earlier, has marked its two-year anniversary.
Data Connect is an initiative of the Victorian Comprehensive Cancer Centre Alliance (VCCC Alliance) which has enabled more than 24 research projects investigating cancer across the spectrum of care, from pre diagnosis, to diagnosis, survival and palliative care.
Speaking at a research showcase of Data Connect work on Monday, Victorian Health Minister Mary-Anne Thomas said Data Connect was “absolutely critical”.
“We've got to link the data because the potential for research to further support improvements to patient care and equitable outcomes is absolutely profound. And that is why the Data Connect project is absolutely critical.”
Minister Thomas said it was “really important” for Data Connect to continue its focus, because although Victoria has some excellent cancer outcomes, diagnoses are predicted to increase by 47 per cent over the next 15 years and not all outcomes are experienced equitably across the state.
“The focus of the current (Victorian) cancer plan is all about equity, because regional Victorians are 10 per cent more likely to be diagnosed with cancer than those living in major cities whereas Aboriginal Victorians are twice as likely to be diagnosed with cancer and almost three times more likely to die from cancer than other Victorians. That is an absolutely unacceptable statistic for us.”
VCCC Alliance CEO Prof Grant McArthur AO said the ability to link primary care and statewide hospital data with other sources such as the Victoria Cancer Registry was “nationally leading” and painted a picture of the patient’s full journey.
“The importance also of data which is seminal at the moment is for cost-effective delivery of healthcare. If we're going to use our precious health care dollars in the most effective way, we have to have data to enable us to do that.
“We're very proud at the VCCC Alliance, with the University of Melbourne and many other partners including many of our alliance members that we can have a real central contribution to Victorian Cancer Plan 2024 to 2028, in delivering particularly two pillars in the cancer plan – that is Optimal access and care across the cancer pathway, and the all-important system design and delivery that's underpinned by research data and intelligence.”
Data Connect Chair, Prof Jon Emery said the future of Data Connect would be in extending the program, if funding allows, to includes Medicare Benefits Schedule, Pharmaceutical Benefits Scheme and national screening program data to provide a fuller picture of the different routes to cancer diagnoses.
More than 150 people including researchers, data custodians, VCCC Alliance staff and members, and consumers attended the second Data Connect Showcase at the VCCC building on Monday.
Data Connect was developed by the VCCC Alliance and the University of Melbourne. It now includes data linkage capability through the Victorian Government’s Centre for Victorian Data Linkage.
The vast trove of data includes more than 130 million de-identified records, including about two million patients.
Cancer research using the data drawn from general practice, hospitals and cancer registries has already revealed results included delays to diagnosis, and windows of opportunity to detect and diagnose cancers earlier. Research has included projects investigating rare sarcomas, lung and colorectal (large intestine and bowel) cancer.
In line with Australia’s privacy laws, any identifiable aspects of the data are removed so patients and their information remain completely anonymous.
The type of data collected from GPs and hospitals includes information about reasons for visiting the GP, prescribed medicines, current and long-term illnesses, test results, height, weight and blood pressure, and lifestyle factors, like smoking. Data from hospitals and clinical registries includes information about treatments, cancer stage and survival.
>2 million unique patients
222 general practices
>70 million GP visits
53 million prescriptions
>20 million emergency department presentations
37 million hospital admissions
600,000 cancer cases
Media enquiries: VCCC Alliance Senior Communications Manager Michelle Henderson M: 0417 765 311 [email protected]
