In an Australian first, more than 130 million medical records from GP and hospital visits are now available to researchers to study the continuum of cancer care through the VCCC Alliance’s Data Connect* program.
Data Connect was officially launched on 4 April 2023 by the Hon Mary-Anne Thomas MP at the VCCC building.
The result of six years of planning, piloting and development, Data Connect provides expert support to researchers to access multiple linked data sets. These can be studied to answer key questions about cancer diagnosis and care, to benefit people affected by cancer in the future.
Data Connect Co-Chair Professor Jon Emery said it is the first time in Australia in cancer research that GP and hospital clinical data have been linked. “This opens up a plethora of new opportunities and insights into key aspects of cancer care, with the potential to make a real difference to patients’ experiences, and to health policy and guidelines,” he said.
“Connecting healthcare data from primary care and hospitals is essential to understanding the factors that contribute to later cancer diagnosis and treatment, affecting patient outcomes and ongoing health issues.”
Speaking at the launch, Minister Thomas noted the disparities in cancer outcomes for regional Victorians and Aboriginal and Torres Strait Islanders and the importance of supporting GPs and primary carers, who play crucial roles in diagnosing and caring for patients.
“How do we keep working to ensure that we are providing the insights that great minds like yours can bring to cancer care, and include everyone? We do that by connecting the data that is available in the acute care sector with primary care for the first time in Australia,” she said.
“The enabling infrastructure, the secure access to deidentified primary care and hospital data will play a key role in closing the capability gap that exists within the research community, and supporting more rapid translation of advances in cancer research into practice.
“We know that the early detection of cancer is what it is all about. The more that we can empower our primary carers to have the best information available to help them to diagnose that cancer early, the better outcomes that we will see.
“I’m very proud of the funding that the Victorian Government has committed to the VCCC Alliance, and Data Connect is a critical investment in the future of cancer care here in Victoria."
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.
Data Connect is an example of the true collaborations fostered by the VCCC Alliance to overcome cancer. The program has been made possible by the alliance, The University of Melbourne and BioGrid Australia, with funding from the Victorian Government and philanthropy. The large-scale data platform was developed by combining software designed by the University of Melbourne to unlock GP (primary care) data, with BioGrid Australia’s existing infrastructure which is able to link data that is privacy protected and ethically approved.
In 2021, the Victorian Government invested $27 million in the VCCC Alliance Strategic Program Plan, with almost $2 million allocated to Data Connect. This built on an initial investment of $1.3 million in the VCCC Alliance Strategic Research Plan 2017-20, also funded by the Victorian Government. The project also received funding from Bupa Foundation ($387,720) to establish the Patron Data for Decisions program (GP data)
VCCC Alliance Executive Director Professor Grant McArthur said the benefits of this $3.6 million public and private investment would be manifold, but further investment would be needed to ensure the growth and sustainability of the ground-breaking program.
“Now it is incumbent on us to maintain momentum, capitalise on the opportunity, share what we learned and expand our capability to more areas and greater benefit,” Prof McArthur said.
“This is a great example of how we can learn from every patient and ensure their experience is applied to improve outcomes for all Victorians affected by cancer.”
*Formerly known as Data Driven Research Hub, part of the VCCC Alliance Data Linkage program
