Call for greater health data sharing to improve rural healthcare


Researchers at James Cook University (JCU) have uncovered significant barriers to delivering adequate healthcare in rural and remote communities of Northern Queensland due to restrictive access to health data.

The discovery emerged during the development of the Northern Queensland Health Atlas, an online map aimed at identifying unmet health needs in the region. According to Professor Stephanie Topp, the project encountered challenges in accessing vital health workforce data essential for understanding local health service capacities.

Of the 41 data collections examined for the Health Atlas, roughly one-third were either partially accessible or entirely inaccessible to the researchers. Despite being publicly funded, these data sources were not transparently available, raising questions about the reasons behind the lack of accessibility.

“Client confidentiality is a common reason provided for not sharing data – but it’s difficult to justify when the data we are seeking is at a service level, rather than an individual client level,” Professor Topp said.

Professor Sarah Larkins highlighted the limitations of national surveys, such as the Australian Bureau of Statistics National Health Survey, which do not adequately capture the healthcare needs of small Northern Queensland towns, particularly those in very remote areas or discrete Indigenous communities.

“These surveys do not capture the fluctuating healthcare needs in many small Northern Queensland towns, which can change within the space of months,” Professor Larkins explained.

The researchers emphasised that rural and remote communities bear the brunt of inadequate representation and poor-quality data collection in state and national health datasets, perpetuating health disparities.

Dr Karen Johnston stressed the need for political and organisational commitment to address these issues.

“We also need to remind service operators at the clinic level, at the hospital-and-health-service level, that sharing data, with proper protections in place, can help all of us to work towards improving performance and better utilising limited resources,” Dr Johnston concluded.

Despite the challenges, the completion of the Northern Queensland Health Atlas in July 2022 demonstrated that effective data integration is achievable with persistence.

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