Connecting healthcare data from primary care and hospitals is essential to understanding the factors that contribute to delayed diagnosis and treatment - and affect patient outcomes and ongoing health issues.
Patient progress from diagnosis in primary care to hospital-based care, and back for post-treatment care, impacts issue identification and potential solutions, presenting an opportunity for system-level improvement.
Big data through collaboration
A major collaboration between the University of Melbourne, VCCC alliance hospitals and BioGrid Australia, an independent data share organization.
The collaboration has enabled connections and centralisation of primary care and hospital data for the first time in Australia; generating a big data platform containing:
Three million patient records
32 million GP encounters or visits
34 million observations
Eight million items of diagnosis information
84 million items of pathology data
The VCCC Research Data Platform is transforming the way researchers and clinicians access and analyse routinely collected health data.
Co-created, flexibly designed platform
The VCCC platform facilitates health data use for research and is underpinned by mutually-beneficial partnerships to leverage existing systems and processes.
BioGrid Australia represents more than 75 Australian hospitals and research organisations; operating a federated data sharing platform for translational health and medical research. The organisation provides secure infrastructure, linking privacy-protected and ethically-approved health data. BioGrid has an overarching agreement with its members (including all VCCC alliance partners) which allows researchers to access authorised data with each member retaining custodianship of its own data.
The VCCC enabled a collaboration between BioGrid and the University of Melbourne’s GHRANITE team. GHRANITE software, developed by Associate Professor Dougie Boyle, allows large-scale data acquisition and encryption of identifiers; both factors required for ethical access to clinical data from primary care.
The VCCC Research Data Platform brings together BioGrid and GRHANITE to build a flexible, scalable research platform; aligned with international best practice, and adapted to the Australian health system and data environment.
Linking the missing pieces
The next step is for gold standard cancer diagnosis and outcomes from the Victorian Cancer Registry to be incorporated into the platform.
Through the Victorian Cancer Registry collaboration, cancer diagnoses across all data sources can be identified and their interactions with health services mapped and analysed to guide future improvements across the healthcare continuum.
Work to incorporate primary care clinical data into the platform using GRHANITE technology was funded by a grant from the Bupa Health Foundation.