A landmark project is leading the way in understanding patients’ end-of-life care, with the new findings promising to drive systemic change to improve the quality of care for patients with cancer, particularly use of primary care services. The large privacy-preserving data linkage incorporates primary care, hospital, emergency, outpatient and mortality data.
This ethically approved linkage program covers the last ten years and incorporates approximately 20,000 patient records. It is thought to be the largest international data linkage ever undertaken that incorporates primary care and hospital clinical data at the end-of-life. It will enable an intricate understanding of the impacts of primary care services at the end-of-life in cancer.
While there is considerable research into how hospital services are delivered at end-of-life, little is known about how primary care usage impacts on quality of end-of-life care in Australia. International studies suggest that the involvement of general practitioners increases the probability of dying at home, decreases hospitalisations, and reduces the need for interventions such as surgery or admission to an intensive care unit. However, up until now, health services researchers have not been able to access data describing the vital contributions of primary care to end-of-life cancer care.
The project utilises de-identified primary care from the NPS MedicineWise MedicineInsight program, hospital data and the (AIHW) National Death Index to build a more complete picture of how patients are accessing health services at the end-of-life. The linkage has been completed by BioGrid Australia and follows strict protocols for privacy including the provision of secure access, including storage, to named investigators only. The project draws on expertise in primary and palliative care from investigators from St. Vincent’s Hospital, the University of Melbourne, the University of Wollongong and La Trobe University as a joint initiative of the VCCC Palliative Medicine Research Group, VCCC Cancer in Primary Care Research Group and the University of Melbourne.
Funded by the Royal Australian College of General Practitioners, HCF Research Foundation and the St Vincent’s Research Endowment Fund, the work is enabled by the infrastructure and expertise of the Victorian Comprehensive Cancer Centre’s Data-Driven Research Hub. With co-funding from the Bupa Foundation, the Hub enabled the first linkage of primary care to hospital data in Australia, bringing together large-scale, ethically approved linked data, in addition to providing expertise in access to and analysis of linked data for research.
Principal investigator Dr Matthew Grant says, "This data linkage allows us to understand the meaningful contributions of general practice to end-of-life care for the first time."
"This data linkage allows us to understand the meaningful contributions of general practice to end-of-life care for the first time."
With project completion anticipated by the end of 2021, this truly collaborative initiative will contribute unique insight into quality end-of-life care for those with cancer. It will guide health service planning in Australia to optimise the integration of primary care services in cancer care.
For more information about linked data initiatives please contact Chris Kearney, Program Manager, Data-Driven Research Hub or for more on this project contact principal investigator, Dr Matthew Grant, Palliative Care Physician, Research Fellow, VCCC Palliative Medicine Group.
