Towards a national primary health care data collection – dementia demonstration project

A general practitioner (GP) is often the first point of contact for people seeking health care. As such, information collected by GPs can provide crucial insights into the health of the Australian population and access to health services. GPs are part of a broader primary health care sector that also includes allied health professionals such as physiotherapists, and pharmacists as well as community health services. Although some primary health care data exists for Medicare-subsidised services in Australia (AIHW 2024b) and the General Practice Incentives Program for Quality Improvement (AIHW 2023), there is currently no complete or comprehensive national primary health care data collection.

To help fill this gap, the Australian Institute of Health and Welfare (AIHW) is undertaking small-scale data demonstration projects designed to better understand the quality, accessibility and usability of primary health care information. The availability of nationally consistent data will help to improve service delivery, decision making, and health outcomes for Australians.

The AIHW worked with 17 Primary Health Networks (PHNs) over 2023 and 2024 to design and implement a general practice data demonstration project. Data sharing agreements were established to test how the AIHW could collect and analyse aggregate data from general practices to explore a specified health condition – in this case, dementia. All 31 PHNs were invited to participate in the project. To be eligible, PHNs were required to complete a privacy impact assessment for the data they contributed and confirm compliance with minimum governance standards related to privacy and consent.

Dementia was the focus of the first demonstration project, as it is a significant and growing health and aged care issue in Australia. In 2023, it was estimated that there were more than 400,000 people living with dementia. In 2022 it was the second leading cause of death in Australia (AIHW 2024a).

Dementia has a substantial impact on the health and quality of life of people with the condition, as well as their family and friends. Despite this, there is a lack of national data on the diagnosis and management of the condition by health care providers, in particular by GPs and specialists such as geriatricians. GP attendances were the most common Medicare service used by people with dementia in 2020–21 (AIHW 2024a).

This project demonstrated general practice data has the potential to provide insights into the health conditions that impact the Australian population. It also highlighted the value of collaboration between the AIHW and PHNs in establishing a national primary health care data collection.

This collaborative project provided an opportunity to:

• explore how primary health care data governance, supply and analytics varies across PHNs
• explore the use of the Primary Health Insights (PHI) data storage and analytics platform
• gain practical insights into the challenges and pathways for developing a national primary health care data collection (for more information see Primary health care – data development).