New Curtin University-led research has found a way to help prevent deaths from chronic kidney disease by using data linkage technology to identify WA communities that are at high risk.
The research team used LinXmart, a data linkage technology developed at Curtin, to bring together information from WA’s four main pathology labs, as well as public and private hospital data, to create a chronic kidney disease (CKD) registry.
The trial study, published 28 September 2022 in the Journal of Applied Clinical Informatics, showed that the data set could identify communities that have a higher prevalence of CKD by analysing linked blood test results, in a manner that protects patients’ privacy
Lead PhD researcher David Lim, from Curtin’s School of Population Health, said that large and complex data reservoirs provide the foundation to unlock the potential within administrative based ‘big data’ assets.
“Big data linked assets, based on data collections used to manage, monitor, assess, and review a wide range of health conditions and services, provide unique opportunities to exploit the advanced data science and big data analytics techniques to understand factors influencing CKD disease progression,” Mr Lim explained.
“These linked data assets can provide practical insights and improve clinical understanding and decision making for CKD patients.”
“[For example], the majority of patients with end-stage chronic kidney disease require dialysis, which is a huge cost burden for the health system – by identifying these patients earlier and engaging with health policy makers and clinicians and doctors in the highly affected areas, we could help to reduce this burden and improve the outcomes for those living with, or at risk of developing the disease.”
Retrospective pathology biochemistry data was extracted from PathWest, Australian Clinical Laboratories (ACL), and Clinipath Pathology for all West Australians aged 18 years or older, who had a serum creatinine test during the study period (2006–2021).
Each lab provided biochemistry results that utilized standardized Isotope Dilution Mass Spectroscopy calibration to enable comparable reporting of serum creatinine.
Morbidity data for the CKD cohort was identified through the Hospital morbidity data system which captures administrative data from all public and private hospitals in WA. Mortality data was sourced from the WA Registry of Births, Deaths, and Marriages, and emergency data was extracted from the Emergency Department Data Collection, which captures WA emergency department presentations.
A probabilistic linkage was performed to join records within and between these six datasets and the results of this linkage identified 2,007,309 individuals: 1,341,444 individuals with a PathWest pathology record, 1,378,507 individuals with a Clinipath record, and 79,364 people with ACL.
“By using this technology and linking data from different health systems, such as pathology labs and hospital records, we were able to identify the burden of CKD in the WA population, including incidence, prevalence, rate of progression and economic cost to the health system, without obtaining personal information such as name, date of birth, gender and address,” Mr Lim said.
“The CKD registry will enable an innovative review of the epidemiology of CKD in WA.”
He explained that the main challenges to data linkage around the world are not related to the technical aspects of integrating data, but rather they are often centred on more practical elements of data sharing, especially regarding of the release of personal information across organisations.
“In a small number of health systems around the world, there are integrated health databases used for research purposes, but in majority of cases there are still some major challenges with accessing patient data, including missing or inconsistent data and privacy concerns with data sharing and linkage,” Mr Lim said.
“[Yet] by accessing data from across the health systems, we can collect information about an individual when they present to a broad range of medical (both public and private sector) and community health services.”
For example, over 55% of individuals with PathWest records had pathology records with other providers; similar results were seen for Clinipath, where 53% of individuals had records with other pathology providers; 91% of ACL’s patients had data stored with other organisations; and 600,000 people had records lodged with the Department of Health.
“Using linked data from across the care continuum, researchers can evaluate the effectiveness of service delivery and provide evidence for policy and program development,” Mr Lim said.
“More research needs to be done to determine which locations and communities are considered high risk, but this data linkage technology has great potential for the WA health system and could be used to better understand the prevalence of other diseases, such as cardiovascular disease, which have a huge impact on our population.”
+ See October’s Medical Forum magazine at www.medforum.com.au to read about how kidney disease is on the rise in WA and what is being done to support patients.