Dementia demonstration project reveals the complexities of building a national health data system

Dementia demonstration project reveals the complexities of building a national health data system

The demonstration project, a collaborative effort between the AIHW and 17 Primary Health Networks (PHNs), sought to explore how general practice data can be harnessed to better understand population health. Focusing on dementia, the project examined data sharing, governance, and analytics using the Primary Health Insights platform. While the initiative showed that general practice data holds immense potential for revealing patterns in health conditions, it also highlighted a number of practical challenges.

One of the key issues identified was variability. Data extraction methods differed significantly between PHNs, leading to comparability issues and gaps in key data items. In some cases, essential information was simply missing from the clinical systems, while governance arrangements varied widely between regions. The absence of a standard national data-sharing agreement further complicated matters, as did differences in resourcing and capacity among the participating PHNs. These challenges are a stark reminder of why nationally consistent primary health care data is still very much a work in progress.

Yet, the project also uncovered opportunities for improvement. By developing and applying consistent data standards and governance—from the point of data collection through to extraction and analysis—there is considerable potential to enhance the quality, consistency, and accessibility of general practice data. Initiatives such as the PHN National Data Governance Committee and ongoing quality improvement work within PHNs, alongside data standardisation efforts by the AIHW and CSIRO, are promising steps in the right direction.

The report’s findings, although not directly comparable with other estimates, revealed that in 2023, 0.8% of active general practice patients aged 30 and over, and 2.5% of those aged 65 and over, had a dementia diagnosis. The study also noted that a higher proportion of individuals with a dementia diagnosis were women and that dementia rates increased with age. These findings align with other data sources, lending credibility to the demonstration project despite its limitations. However, the project only included data from 17 out of 31 PHNs and a subset of all general practices, focusing solely on “active” patients—those who visited three or more times in the past two years—thus not representing the broader population.

The next phase involves a crucial step: testing the use of de-identified general practice patient data. This will allow for a more in-depth investigation into data quality issues and help map out the pathways toward establishing a reliable national primary health care data collection (NPHCDC). Because without good, consistent data, it’s impossible to truly understand—and improve—our healthcare system.