Restrictions on public access to information about health service delivery, combined with reliance on health data sources that are 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 revealed to a JCU research team while they were seeking to obtain and merge multiple government and non-government health datasets. They were doing so to create the Northern Queensland Health Atlas; a detailed online map designed to provide a clearer picture of unmet community health needs and inform health service planning to meet those needs.
Another JCU research project, conducting a data scoping exercise for reform of disability, rehabilitation and lifestyle services in Northern Australia, encountered similar obstacles.
“Both our practice 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,” Professor Stephanie Topp 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, the question of transparency about the data, and transparency regarding the reasons for not sharing that data, are important questions to ask,” Professor Topp said.
“Client confidentiality is a common reason provided for not sharing data — but difficult to justify when the data we are seeking is at a service level, rather than an individual client level.”
Ironically, local government health service planning, including Hospital and Health Services in North Queensland, are likely also constrained by incomplete and non-representative data.
Among key data sources for health and disability data are two surveys conducted by the Australian Bureau of Statistics; the National Health Survey (NHS) and the Survey of Disability, Aging and Carers (SDAC). However, neither of these surveys are conducted in Modified Monash 7 areas (very remote areas) or in discrete Aboriginal and Torres Strait Islander communities. And both the NHS and the SDAC are conducted only once every three years.
“These surveys do not capture the fluctuating healthcare needs in many small Northern Queensland towns, which can change within the space of months,” observed Professor Sarah Larkins. “It is an aging population. Older people develop health concerns and move to larger towns with more medical facilities, families relocate when children reach high school age, and workers migrate — there is a mining community in the region and the mine will soon close. Some communities also experience massive seasonal fluctuations in population due to grey nomads.”
Another commonly used data source, the National Health Workforce Data Set (NHWDS), is updated regularly, drawing upon Australian Health Practitioner Regulation Agency (AHPRA) registration information supplemented by an annual workforce survey. However, AHPRA data does not include crucial non-registered health professions, for example, speech pathologists, Aboriginal and Torres Strait Islander Health Workers and data entry clerks.
The NHWDS has other limitations. While it captures the main practice location of health professionals, there is inadequate location data about workforce delivering outreach, or locum-style services — upon which rural and remote communities are often heavily reliant.
And the suppression of data (i.e., using values of “0 to 3” in place of actual health professional numbers) renders it useless for gap analysis or planning purposes, since many rural and remote areas have fewer than three full-time registered health professionals.
“Zero to three can be the difference between the existence of most health services in communities north of Cairns being there or not,” said Professor Topp.
“All in all, these 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.”
This is reinforced by the lack of standard definitions for measuring data, an effective barrier to agency inter-operability.
According to Professor Topp, despite recognition of these challenges, there appears to be widespread resignation towards this situation in Australia’s health sector.
"People just aren’t sure where to begin in tackling this issue,” she said.
But the completion of the Northern Queensland Health Atlas, released in July 2022, was proof of concept that, with persistence, this type of data integration can be achieved.
“That is not to say scaling this up would be a simple process,” she said. “But we should be able to expand this level of data-integration Queensland-wide, and each state should be able to do the same if an agreed upon process was generated at an inter-jurisdictional level.”
“We also need political and organisational will to drive that organisational commitment at the top end,” Dr Karen Johnston added. “While also looking for ways to remind service operators at the clinic and 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.
“It can help identify potential project partners and assist services to align efforts and funding in a way that is complementary rather than duplicative,” she said. “And it can help provide evidence to advocate for more resources and better ways of doing things.”
