AIHW report puts health data and digital in spotlight

The Australian Institute of Health and Welfare launched Australia’s Health 2026 today calling for a shift from fragmented health data collections to a more integrated national health data system, with primary care data, linked data, interoperability standards and public health surveillance singled out as priorities.

It is the 20th edition of its biennial health series which provides a comprehensive picture of the state of the nation’s health.

The report’s sixth focus area, From silos to systems: strengthening Australia’s health data, says policy challenges increasingly span multiple sectors, requiring a more connected approach to health data.

AIHW said current health data development activity was converging around four system-level priorities: addressing long-recognised national data gaps, particularly in primary care; large-scale data linkage to understand patient pathways and outcomes; national consistency through shared definitions, data standards and interoperability arrangements; and stronger Aboriginal and Torres Strait Islander data governance.

It said general practice and other community-based primary care services account for the majority of healthcare encounters in Australia, but historically have not been included in comprehensive, nationally consistent data sets.

AIHW said this had limited the ability to understand access, quality, outcomes and unmet need outside hospital settings.

One of the key initiatives highlighted in the report is the proposed National Primary Health Care Data Collection, which is focused on harmonising data recorded in clinical systems, including patient characteristics, reasons for encounter and diagnoses, so it can be analysed securely and routinely for national and local reporting.

AIHW said early pilots and demonstration projects had shown this was feasible, while also highlighting the complexity of the primary care data environment.

The agency has partnered with 17 Primary Health Networks on a data demonstration project to examine dementia diagnosis in general practice using aggregate general practice data. Further projects are looking at primary care and outcomes for people diagnosed with mental illness, the prevalence and burden of conditions presenting in primary care, and the use of general practice data to address health data gaps and support quality improvement.

The report also highlights the growing role of linked data in analysing how people move through the health system over time, how services interact and how policy and program changes affect outcomes.

AIHW said this was particularly important at interfaces between primary care, hospitals, disability, aged care and other community services, where fragmented data has obscured system performance.

The National Health Data Hub has expanded in recent years, including the addition of cancer data collections and the progressive inclusion of welfare services data such as specialised community mental health, child protection and homelessness services.

AIHW said these additions strengthen the ability to examine interactions between health and non-health services for people with complex needs.

The report also notes the Australian Centre for Disease Control’s work to create a Public Health Data Network by linking nationally notifiable diseases data and other public health data sets with existing administrative health and welfare data.

AIHW said the objective was to maximise the value of existing data for public health by connecting existing assets to support national coordination of the prevention, detection and response to public health concerns of national importance.

CSIRO’s Sparked program and the development of Australian Clinical Data for Interoperability are mentioned as examples of national initiatives focused on common data elements and interoperability arrangements across jurisdictions and sectors.

AIHW said national coordination did not require complete uniformity in how data is collected across different settings, but did require shared approaches to interoperability, clear documentation and agreed technical foundations to allow data to be combined and analysed at scale.

In his introductory statement, AIHW CEO Dr Zoran Bolevich said telehealth was making health services more accessible, particularly for people living in remote areas, while artificial intelligence was supporting diagnostics, documentation, risk assessment and clinical decision making in a range of health settings.

“Today, the integration of health and welfare data is enabling valuable new insights into how Australians interact with services and systems, which is essential for the care of people with complex or long-term needs,” Dr Bolevich said.

“Important data gaps persist, with robust national primary care and health workforce data still lacking, for example.”

Commenting on Australia’s Health 2026, Research Affiliate from the Charles Perkins Centre at the University of Sydney, Dr Sayan Mitra said, “Australia’s health outcomes remain strong by global standards, but the report points to a problem we need to take more seriously. More Australians are living with chronic conditions and mental health conditions, and the health system is still too often built around late intervention.

“From my perspective as a researcher working across digital health, lifestyle interventions, cardiometabolic health, and early-course mental disorders, the key point is that many chronic diseases begin years before a clinical diagnosis.

“Changes in blood pressure, glucose, body weight, physical activity, diet, sleep, and vascular health often accumulate long before people enter the health system, which are not abstract risk factors, but measurable signals of future disease burden.

“Digital health has an important role, but only if we stop treating those signals as just a way to collect more data or as a reason to push more apps into people’s lives. It should help us use information earlier, fairly and practically, so we can improve healthspan and reduce avoidable disease burden.

“My argument is that Australia’s next major health gain will depend on shifting digital health from passive data collection to active prevention infrastructure, using individual-level signals at population scale to identify risk earlier and act before chronic disease becomes established. Australia cannot treat its way out of chronic disease, and acting as though it can will only make the burden larger,” he said.