Comprehensive, accurate and timely data are necessary for effective population health monitoring of chronic kidney disease (CKD). Although national health information collections continue to develop and improve, there are still gaps and the information collected may not always be brought together efficiently for analysis (AIHW 2022a).
Increasing digitisation of health information means more detailed data are being collected, expanding the possibilities for analysing and reporting. There is greater demand for information that:
- is easily accessible, flexible and interactive
- is comparable at national, subnational and at smaller geographic levels
- maintains privacy and confidentiality.
The National Strategic Action Plan for Kidney Disease identifies several data priorities that can drive improvements in the effectiveness and efficiency of kidney disease prevention, treatment and support (Department of Health 2019). Key priorities include expanding the collecting of person-centred data, and increasing data linkage and integration.
Comprehensive person-centred data
Following individuals from a diagnosis of CKD through their interactions with the health system improves our ability to analyse not only the development and trajectory of disease but also the interplay of determinants and interventions and the role and performance of the health system in preventing, treating and managing CKD.
Current opportunities to improve consumer-led and person-centred CKD data includes:
- collecting comprehensive data at all points of primary health care activity, particularly at diagnosis and early treatment of early and mid-stage CKD. This can provide a fuller picture of CKD management, including associated comorbidities, early interventions and long-term outcomes as well as improving estimates of incidence, prevalence and early treatment. A National Primary Health Care Data Collection is currently under development (AIHW 2022b).
- conducting regular health surveys that measure markers of CKD and other markers of chronic disease and nutrition status. This will allow population health trends in the Australian population to be better determined. The Australian Bureau of Statistics is undertaking a multi-year Intergenerational Health and Mental Health Study in 2020–2024, which will include a biomedical component (ABS 2022).
- detailed information for priority population groups, including Aboriginal and Torres Strait Islander people, people from lower socio-economic areas, people with disability, and culturally and linguistically diverse populations. These groups may experience substantial disadvantages in relation to kidney health and in accessing health services.
- data for smaller geographical areas to identify variations in health status and care by location. The AIHW has published several dynamic dashboards to show the distribution of the impact of CKD by geographic levels (AIHW 2021).
Since 2000, the Australian Governments’ National Health and Medical Research Council has expended $443.3 million on kidney disease research. The Medical Research Future Fund has invested $28.0 million in 15 grants with a focus on kidney disease research since its inception in 2015. These investments will help strengthen CKD prevention and care through providing better evidence and data.
Data linkage and integration
Data on the Australian health system are largely organised around occasions of service. Data linkage, also known as data integration, brings together information from more than one source. Matching disparate pieces of information can fill gaps in knowledge on not only specific diseases and the effectiveness and quality of health services and population groups but also across the health and welfare sectors.
Linking these data, together with other data such as from surveys, allows for a richer understanding of how people and population groups interact with health services, and their health outcomes.
Two examples of recently linked data sets include the National Integrated Health Services Information Analysis Asset, developed by the AIHW, and the Multi-Agency Data Integration Project developed by the Australian Bureau of Statistics (AIHW 2022a).
Current opportunities presented by health data linkage include:
- linking primary care data with the existing Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) and Australia and New Zealand Organ Donation Registry databases. This linkage will assist in building a comprehensive picture of clinical measures of CKD and long-term outcomes; it will also facilitate research and the monitoring and evaluation of policies and programs (Department of Health 2019).
- linking ANZDATA and the National Death Index, to ascertain the true incidence of kidney failure by also counting people with non-KRT-treated kidney failure. The AIHW is currently working to develop the Kidney and Diabetes Data Integration project for this purpose. This dataset will provide information on individuals with diabetes and kidney disease, their treatment, their health service usage, and their diabetes-related complications and comorbidity over time. The AIHW and researchers will use this dataset to develop new methodologies to refine the national monitoring of CKD.