Generating data is one thing, but what if you live in place in which data is notoriously hard to access?
Local researchers are frustrated that Australia’s unnecessarily complex and fragmented health system is preventing them from accessing the kind of data easily available in other parts of the world, notably Scandinavia and Europe – and that there remains no political will to fix it.
The way a nation’s health system is organised is integral to the quantity, quality and speed of research a country is able to publish, and experts fear that Australia’s health system – a complex web of service providers and other health professionals from a range of organisations, run by federal, state and territory governments and the private sector – is preventing them from achieving the type of research that would help fix some key health issues.
“It’s historical, with lots of vested interests,” says Melbourne-based Professor Terence O’Brien, Deputy Director of Research at Alfred Health. “The fundamental issue we have in Australia is that we have a federal, state and private health system, and they all come with their own bureaucracies and structures.
“It’s a very inefficient system, but it’s so entrenched it’s almost impossible to fix.”
The federal government funds Medicare and the Pharmaceutical Benefits Scheme (PBS), primary health care services such as GPs and residential aged care, and also supports and regulates private health insurance access. State governments manage and fund public hospitals, deliver community-based and preventive services such as cancer screening and immunisation, ambulance services and more.
Private health covers treatment in public or private hospitals as a private patient, as well as health services that are usually not covered under Medicare such as physiotherapy, dental and optical.
To make things even more complicated, some local governments also play a role, including the delivery of community and home-based health and support services, environmental health services such as waste disposal and water fluoridation, and public health activities.
What this ultimately means is that large-scale data is impossible to obtain from one or even a couple of sources, often sending researchers on a wild goose chase through bureaucratic minefields, forking out tens of thousands of dollars per application.
Dr Roxanne Hastie, a perinatal epidemiologist and lab-based scientist at the Mercy Hospital for Women, has been waiting for three years to gain access to data that straddles two forms of government – federal and local – to try and improve the treatment and management of pregnancy complications.
“We’re currently waiting on a dataset we applied for in 2019 looking at about a million births linked with the PBS and childhood education data,” she says. “The frustration is that we’ve had to put in five separate applications across federal and local governments – this just wouldn’t happen in Scandinavia or other EU countries like Scotland.”
Hastie, who has worked in Sweden and is affiliated with Uppsala University (as well as the University of Manchester, UK) says she is able to access Scandinavia’s (and the UK’s for this research) well-organised health data registry while working overseas. This has put her in a unique position where she is able to directly compare the process of obtaining data from health databases outside of Australia.
“Not only does Scandinavia and Scotland have one central system you apply to, but they help you ensure that your application will meet standards and is the best quality before it goes to the board for approval,” Hastie tells Cosmos.
“Scandinavia and EU in general recognise the value of these datasets in improving real outcomes for people – it would really help Australians and our health system if we had our own centralised data, custodian or government that could facilitate this with ease.”
Ben Mol, Professor in Obstetrics and Gynaecology at Monash Health in Melbourne, has spent most of his career in the Netherlands and says that compared to northern and western Europe, Australia is a “very regulated country… with many layers of bureaucracy”.
“So many people have to sign off on things before something happens, at least compared to the Netherlands,” he says.
So, what is best practice?
In Europe, Scandinavia’s health data access is the best because “they have a system with a unique code attached to each individual”, he adds. “For everyone born in Scandinavia, there is a unique number which follows you through life and stays in all the registries, making it relatively easy to link the data.”
Mol cites pregnancy data as an example: in Australia, maternity data is stored in the National Perinatal Data Collection, it is very limited, recording only live births and stillbirths where gestational age is at least 20 weeks or birth weight is at least 400 grams (with some exceptions).
“The fundamental issue we have in Australia is that we have a federal, state and private health system, and they all come with their own bureaucracies and structures. It’s a very inefficient system.”Professor Terence O’Brien
Due to its unique number tracking system, researchers using Scandinavian data can track women’s health trajectories over time, allowing them to link instances of, say, cardiovascular disease or psychiatric illness later in life to pregnancy outcomes.
“Scandinavia is the only set of countries that supplies the kind of big, linkage studies that allow us to look at various relations over years, and health consequences in later life,” Mol says.
He points out that historically, Scandinavian nations have not suffered the significant trauma of the Holocaust, which has informed the way they collect data.
“In Germany, for example, the system has been built to make it impossible to track individuals. There’s major trauma there, so when they reshaped the country after World War II, they organised it in such a way that it would be impossible for any government to get access over nationwide data.”
Examples of these large studies include a recent Danish project that found a link between hormone replacement therapies and depression after examining a nationwide register of more than 800,000 women aged 45 years over a period of 22 years. Another Swedish study surveyed 13,437 adults and found breathlessness was independently associated with obesity and weight gain in people over the age of 20 years.
In 2005, a new initiative began in Australia to link vital health data about disease progression and treatment through the Molecular Medicine Informatics Model (MMIM) project, a ‘virtual’ research repository of clinical, laboratory and genetic datasets gathered from a dozen hospitals and research institutes. It has since evolved into BioGrid Australia, a not-for-profit company owned by the Australian medical research sector.
CEO Maureen Turner says while MMIM initially received funding from different government sources, it became apparent that the “project needed to become a company and be sustainable in its own right”.
“We now operate as a company … that is owned by members from health services, research institutions and universities who want to collaborate and share data,” Turner says.
At its core, she says BioGrid Australia is about efficiency and finding ways to make it easier for researchers to securely access privacy-protected health data to conduct valuable research.
Unlike Scandinavia’s data collection model, which Turner points out is mandated and legislated by government, BioGrid Australia works by having member organisations agree to an “evergreen collaboration agreement”. This covers issues related to intellectual property of information and other legal matters arising from different organisations sharing data and working with each other.
The onus of data release still lies with each organisation. Each member has its own BioGrid Australia server, which it feeds only the data it wants BioGrid to have access to. While not perfect, the solution is the best we have for multi-organisation data sharing in a country with vastly different jurisdictional requirements and health funding models.
“What BioGrid has developed is an online system that researchers can come to and, for a small fee, apply to access data available through us,” Turner says. Members include ACT Health, Alfred Health, Royal Melbourne Hospital, Royal Adelaide Hospital, Royal Brisbane and Women’s Hospital, Royal Prince Alfred Hospital, Royal Hobart Hospital, Monash Health, the University of Melbourne, UNSW and more.
The will to fix
O’Brien says that while governments are aware of Australia’s shortcomings when it comes to health data storage and linkage, there remains little to no political will to fix it. He says the only government to try to “genuinely reform the system” was Kevin Rudd’s. Along with then Health Minister Nicola Roxon, Rudd attempted to overhaul the way medical data was kept in 2011 by dedicating $55 million for nine projects, to be run by various groups including pharmacists, general practitioners and hospitals.
“Scandinavia and EU in general recognise the value of these datasets in improving real outcomes for people – it would really help Australians and our health system if we had our own centralised data, custodian or government that could facilitate this with ease.”Roxanne Hastie
“They had the right idea, but weren’t able to achieve anything in the end – the state health departments didn’t want to give up their data,” he says. “It was one of these too big, too complex problems with too many vested interests.”
Associate Professor Alex Polyakov, a researcher at University of Melbourne’s faculty of Medicine, Dentistry and Health Sciences, says it would cost millions to run large-scale studies such as those routinely done in Scandinavian countries. Having access to the story of data they have would make it much easier and cheaper.
“We have the data in Australia — it’s just terribly fragmented,” he says. The recent hacking of Medibank and Optus also brings up legitimate questions about privacy, Polyakov adds. “Data needs to be protected, and it’s difficult to guarantee 100% that there will be no data breach.”
Originally published by Cosmos as Why are Scandinavian health studies so good?
Caroline Zielinski is a freelance journalist based in Melbourne. She writes on health, science, social affairs and all issues related to women