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

The insights from this project will inform future general practice data demonstration projects and, ultimately, the development of a national general practice data collection.

This project demonstrated a data set using aggregate general practice data can be created through collaboration with Primary Health Networks (PHNs), and that the data can be used to understand a specific health condition. The project also identified limitations in the coverage, availability, and quality of the data. Further cooperation between the Australian Institute of Health and Welfare (AIHW), data providers and extractors will be required to improve the quality and usability of general practice data before data can be used for decision-making purposes.

The project also identified opportunities for data improvements. These include improving the consistency, quality, and accessibility of data by developing and applying consistent data standards and governance, from point of collection to extraction and end use.

Several activities are already under way to improve data consistency, quality and accessibility. These include:

• the development of consistent governance across PHNs through the PHN National Data Governance Committee
• the AIHW's work on governance processes for a national collection
• PHNs' quality improvement work with general practices
• data standardisation work by the AIHW and CSIRO, including the Sparked work program.

The Sparked work program aims to improve digital health information sharing through the development and adoption of national data standards, including clinical information models, terminology value sets and Fast Healthcare Interoperability Resources (FHIR) standards. The AIHW is participating in the program to ensure alignment between existing and developing health data standards and to develop standards for a national primary care data collection.

All stakeholders will need to continue to focus on patient privacy and data security and communicate these activities to patients and general practitioners (GPs). This work will build community trust in the collection of data for public health purposes.

A key next step to building a national primary health care data collection will be to deliver a demonstration project using de-identified patient general practice data. These data will enable investigation of data quality issues, as well as more extensive data analysis. This will help to identify the pathways towards a national primary health care data collection.

In the future, a collection of de-identified patient data could present opportunities to increase the utility of primary health care data sets by linking to other data sources. Incorporating other data sources could address quality issues within primary health care data. This, in turn, could fill gaps in existing general practice data on patient socio-demographics, comorbidities and risk factors and interactions with other parts of the health system.

A collaborative approach is essential to develop systems, processes, and products for a national primary health care data collection that delivers value to all stakeholders, including patients, practices, PHNs, software providers and others. The AIHW will continue engaging with all parties including peak bodies to better understand data collected from general practice clinical records and the specific information needs of each group.

From the dementia data perspective, this project is a specific data improvement activity within the National Dementia Data Improvement Plan 2023–2034 (AIHW 2024b). Insights from this project will inform ongoing work on dementia data improvement, including any potential future collaborations between the AIHW and PHNs about dementia. More information about dementia can be found in the Dementia in Australia report (AIHW 2024a). Dementia in Australia is updated annually to include the latest data from a range of sources. Additional information on dementia by PHN that was collected for the project can be found in the supplementary data tables attached to this report.

The AIHW will conduct a second demonstration project in partnership with PHNs, with topics currently under consideration.