Featured News Restrictive health data systems limit health care

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Tue, 5 Mar 2024

Restrictive health data systems limit health care

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Image: Piron Guillaume

A James Cook University research team has found restrictions on public access to information about health service delivery and reliance on health data sources not fit for purpose are hindering the provision of adequate health care to Northern Queensland rural and remote communities.

The magnitude of the problem was discovered by researchers constructing the Northern Queensland Health Atlas, a detailed online map designed to provide a clearer picture of unmet community health needs.

JCU’s Professor Stephanie Topp said another JCU research project, conducting a data scoping exercise for reform of disability, rehabilitation and lifestyle services in Northern Australia, encountered similar obstacles.

“Both experiences highlighted significant challenges regarding access to and accuracy of health workforce data in Australia, which is critical to understanding the capacity of health services to meet local health needs,” she said.

Of the 41 data collections sourced by the Health Atlas researchers, around one-third were only partially accessible or not accessible at all.

“All these data collections are publicly funded information sources about publicly funded health services. So it’s important to ask questions about the transparency of the data and transparency regarding the reasons for not sharing that data,” said Professor Topp.

“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.”

JCU’s Professor Sarah Larkins said the Australian Bureau of Statistics National Health Survey and the Survey of Disability, Aging and Carers are only conducted every three years and do not cover very remote areas or discrete Aboriginal and Torres Strait Islander communities.

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

Professor Topp said rural and remote communities are subject to the worst of the poor representation and the poor-quality data collection in the big state and national health data sets.

“It seems to reflect a focus on making the most impact on the largest population, rather than the most impact on the most vulnerable population. A case of out of sight, out of mind. We can’t achieve health equity like this,” she said.

Professor Topp said the completion of the Northern Queensland Health Atlas, released in July 2022, was proof of concept that – with persistence – effective data integration could be achieved.

JCU’s Dr Karen Johnston said political and organisational will is needed at senior levels.

“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,” said Dr Johnston.


Professor Sarah Larkins
E: sarah.larkins@jcu.edu.au

Professor Stephanie Topp
E: stephanie.topp@jcu.edu.au

Senior Research Fellow Karen Johnston
E: karen.johnston@jcu.edu.au