The industry problem / opportunity
Chronic kidney disease (CKD) contributes significantly to morbidity and premature mortality. In Australia, it affects over 1.7 million people, contributing to around 1 in 10 deaths annually. Early-stage CKD goes unrecognised in 80-90% of all cases, severely adding to the degree of renal impairment in patients and significantly adding to the public health cost burden. Given this, there is an urgent need for better evidence on CKD detection, management, and tools to identify CKD patients and enable early intervention.
The solution and outcomes
The Digital Health CRC (DHCRC) brought together a collaborative project with Western Australia (WA) Department of Health, WA Country Health Services, WA Primary Health Alliance, Curtin University, and WA pathology providers, with input and support from La Trobe University and Deakin University on key deliverables. The project produced a large dataset (the CKD.WA Data Asset) linking state-wide hospital and mortality data with private and public pathology results. Records from over 2.5 million patients, spanning a ten-year period, were linked to examine CKD patterns across various populations and over time. Linkage of records was performed using a novel technique that links data without sharing personally identifiable information.
Researchers analysed this data for new insights, including the incidence, prevalence, progression, and economic burden of chronic kidney disease in Western Australia. They also identified risk factors associated with progression from early to advanced CKD. This new information can now inform evidence-based clinical recommendations to improve models of care for CKD, by highlighting resource requirements, identifying targets for early intervention, and addressing the needs of those most at risk through tailored prevention and treatment approaches. In particular, the prevalence paper (Mehta et al. 2024) was used by WA Country Health Service to inform business cases and briefing notes, and results have also been socialised with the Renal Health Network.
The impact
This project is the first to link private and public pathology records from four major pathology providers using a Privacy Preserving Record Linkage (PPRL) technique to integrate clinical pathology data to hospital and mortality records. This further demonstration of the PPRL data linkage capabilities developed at Curtin University supported the spin out of LinXmart Co in early 2025. This will allow the LinXmart software and services to be applied to a broader range of novel research applications across Australia and internationally.
Study findings have informed the development of the WA Department of Health Renal Dashboard, with ongoing discussion between Curtin researchers and the Department on further collaboration. The linked CKD.WA Data Asset is now ready for future use in research, and potentially beyond as a clinical registry.
The insight
Nasir David, Director of Data and Information Systems, WA Health said: “The project has demonstrated the power of linked data to support policymaking, personalised care, and patient empowerment, enabling better health outcomes and resource allocation. This data can help drive effective public health strategies, early detection, and proactive health management.”
Aron Chakera, Nephrologist, WA Health said, “The research underscores the critical need for early detection, effective intervention, and targeted support, especially for those in underserved areas who are most affected by CKD.”
What’s next
An opportunity to innovate using the CKD.WA Data Asset is being developed into a scaled pilot on privacy-preserving synthetic data generation, in collaboration with DHCRC, WA Health, and Curtin University. Creating a proof-of-concept synthetic dataset that reflects key statistical characteristics of the real-world data and evaluating its fidelity against core health indicators offers a chance to explore potential health system applications of synthetic data and canvas industry views on translation pathways.
