The VCCC Data-Driven Research Program is building upon infrastructure, linked data, and expertise of the alliance to create a research-ready data platform to drive the next generation of advances in cancer care.
Historically, health data has been siloed in separate systems, generally collected for single-use and bound by complexities in governance and challenges of linkage which has prevented its use for effective, scalable health services research.
Officially launched in November 2019, the Data-Driven Research Program conducted the first large-scale linkage of primary care and hospital data in 2017 and has been building upon the enabling infrastructure to enable novel, longitudinal health services research across the continuum of care.
The Program combines infrastructure from across the VCCC alliance, including Associate Professor Dougie Boyle’s GRHANITE data extraction and deidentification/linkage software, BioGrid Australia’s established, ethically-approved linkage and access infrastructure, and a Secure Research Environment housed at the University of Melbourne. It also incorporates expertise and guidance from clinicians, researchers, scientists and academics driving a core team of program management and technical experts specialising in the use of large-scale linked data for research.
With planning of the next phase of VCCC funding underway, multiple core objectives will be extended, using existing infrastructure and capability of the linked data program. These include:
The Data Program has already enabled multiple collaborative projects. These utilise linked primary care, hospital administrative, clinical registry, and population registry data to build a more complete picture of the cancer journey, how patients engage with primary and acute services and how these impact on outcomes and quality of life post-treatment to treatment.
The Program acts as a research project incubator, assisting in idea generation, concept development, and providing guidance on analytical methods so that research utilising linked data can have the best possible impact on patient outcomes.
Critically, the Program incorporates complete datasets from multiple sources which enables research on all health conditions. A non-cancer project is already underway utilising the linked primary care and hospital data: in this case seeking to analyse how Indigenous patients with cardiovascular conditions are treated, to address the poorer outcomes in this patient group.
The Program invites interest in providing guidance on the next phase of funding, specific project ideas, and particularly the incorporation of additional datasets that would supplement health services research or benefit from additional linked data. To find out more or discuss specific project opportunities please contact Chris Kearney, Program Manager - VCCC Data-Driven Research Hub e. [email protected]
