Annual report 2024–25

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

Primary health care data collections refer to data gathered, standardised and analysed using information generated in general practice and other primary care health services. These data include information on patient demographics, diagnoses, treatments, medications and preventive care. Such collections are essential for understanding population health trends, evaluating service delivery and informing health policy and planning.

Australia has not yet established a comprehensive national primary health care data collection. This is partly due to the decentralised nature of general practice, where data are held in diverse clinical information systems across thousands of independent practices. Variability in data quality, inconsistent coding practices, privacy concerns and the absence of a unified governance framework all pose challenges to national integration.

The dementia demonstration project marked a critical step in exploring the feasibility of a national primary health care data collection. Led by the AIHW in collaboration with 17 Primary Health Networks (PHNs), the project tested the technical and governance foundations required to integrate general practice data across PHNs.

Using dementia-specific data gathered by general practitioners, the project served as a prototype to assess the quality, accessibility and usability of aggregate general practice data. It examined data governance frameworks, extraction processes and analytics capabilities across PHNs, using the Primary Health Insights (PHI) platform.

The findings confirmed that general practice data can contribute meaningfully to national health intelligence. However, the project also identified variation in data availability and comparability, data governance and resource availability among PHNs. These differences present challenges to consistency and scalability, but they also clarify the areas where targeted investment and coordination are needed.

While limitations in data coverage and standardisation remain, the project successfully demonstrated the value of primary care data and established a foundation for subsequent demonstration projects. The project reinforced the importance of sustained collaboration to improve data quality, access and governance, while maintaining robust privacy protections.

This work positions the AIHW as a key strategic partner in the development of a national primary health care data system, capable of supporting policy, planning and research across priority health areas.

Building on the success of the dementia project, the AIHW is working with PHNs and data extractors on demonstration projects using deidentified unit record data.