Summary

Nationally consistent primary health care data is a known information gap for effective population health monitoring, research, policy, and planning in Australia. To help fill this gap, the Australian Institute of Health and Welfare (AIHW) is undertaking a series of small-scale data demonstration projects with the aim of generating a better understanding of the general practice data landscape. 

The first demonstration project was a collaboration between the AIHW and 17 Primary Health Networks (PHNs) and focused on dementia in general practice. The project demonstrated that 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 (NPHCDC).

The general practice data demonstration project focused on dementia 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 pathways for developing a NPHCDC.

Opportunities and challenges

The project demonstrated general practice data has the potential to provide insights into the health conditions that impact the Australian population and highlighted the complexity of the primary health care data environment and the challenges with developing a nationally consistent data collection.

These challenges included:

  • comparability issues across data extractors and between data extracts
  • lack of key data items available and extracted from clinical information systems
  • lack of complete data item coverage across all PHNs
  • variation in governance arrangements (including data suppression requirements) across PHNs
  • lack of a standard data sharing agreement
  • variation between PHNs capacity to participate in the project, including resourcing.

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.

Within the primary health care data environment, 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.

Findings

The data showed that 0.8% of active general practice patients aged 30 and over, and 2.5% of those aged 65 and over, had a dementia diagnosis in 2023.

While the rates of dementia from this project are not comparable with other estimates, it found similar demographic characteristics and comorbidities:

  • A higher proportion of people with a dementia diagnosis were women.

  • Dementia diagnoses increase with age.

  • Comorbidities for people with dementia were similar to those found in other work based on other data sources.

  • Dementia types identified in this study were consistent with those of other sources.

Data limitations

The data for this project do not represent the broader population and were limited to:

  • 17 out of 31 PHNs
  • a subset of all general practices within participating PHNs
  • patients who had attended the general practice or service 3 or more times in the past 2 years (referred to as active patients)
  • a practitioner either making a diagnosis of dementia for their patient, or being aware of a diagnosis from another source, and entering that diagnosis in their clinical information system in a way that it was included in the data extraction methodology for the system.

What's next?

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

The first demonstration project was an important step towards building a national primary health care data collection. As this project collected aggregate data only, a key next step will be to deliver a demonstration project using de-identified general practice patient 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 nationally consistent data collection.

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