By DAVID MYTON

Research: in the words of Stephen Hawking it is “the joy of discovering something no one knew before”. It’s what most academics live for, even if they love teaching. Indeed, research informs good teaching, ensuring that what’s been taught in the classroom is at the forefront of new knowledge.

For some academics, though, conducting research is the easy bit.

Easy, that is, in comparison with the mind-boggling bureaucracy often involved in getting to the start line.

This is particularly so in Australia’s Health and Medical Research field.

“Our HMR is world class – but it’s very difficult to make it happen,” says Dr Uma Srinivasan, Senior Health Scientist with the Digital Health CRC.

The problems begin when researchers attempt to find the correct data sets – it can take ages, she says, but they need this information before applying for time-restricted grants from different funders.

“They must then negotiate with data custodians and data linkage units, who can be extremely cautious in providing researchers with access to health data.”

And there’s more: researchers must also navigate numerous Human Research Ethics Committees (HRECs) while also “remaining mindful of Australia’s similarly complex privacy and data-use legislation”.

Srinivasan says navigating these processes “can take years” and represent an inefficient use of taxpayer-funded grant money resulting in delays to “derive value from research outcomes that are important for the nation’s health and wellbeing”.

She believes it is possible to change this situation – but only if politicians and bureaucrats exercise the necessary “vision, drive and motivation”.

 

A wealth of health data resources

Srinivasan, an adjunct professor at Western Sydney University – and formerly Principal Research Scientist at CSIRO and a project director at Prince of Wales Hospital Group – has research interests in areas including network analytics and predictive modelling for the healthcare sector.

She made an extensive contribution to the latest DHCRC report Flying Blind, Australian Researchers and Digital Health Australian Health Data Series: Volume 2, which puts the spotlight on how researchers access and use data for health and medical research.

Australia has a wealth of health data resources, she says, many originally collected for administration or compliance reasons. But these resources are fragmented, held in different places by different bodies.

What is needed is “appropriate access” to these datasets to authorised researchers within a properly managed and coordinated framework ensuring data security and privacy.

This would help health researchers to “generate new insights, uncover new trends and deepen our understanding of health and disease”.

However, Srinivasan says the fragmentation of the Australian system “is not going to easily change” because of the entrenched funding models and the split of state and federal government jurisdictions.

Nevertheless, change is possible: she points out that countries such as the UK and the US have more integrated systems, developed thanks to personal leadership initiatives by then President Barak Obama in the US and former Prime Minister David Cameron in the UK.

The development of integrated health record systems and linked health data have been hampered in Australia, she says, by “mistrust and fear” from a public anxious about possible privacy violations.

“I think consumer education around linked health data is something that has not happened effectively in Australia, and the privacy worry has led to mistrust and fear. We need far better public education and national leadership on the issue,” she says.

“Their worry is, ‘if my data goes into the wrong hands what will happen? This genuine fear needs to be addressed and quelled with a balanced information campaign and education outlining the benefits, and the pros and cons of linked health data.”

She points out that people took to Facebook, for example, because they could see the point of it – “they wanted the social community and belonging offered by that kind of a platform”. They need to see the benefits that linked health data can contribute to their quality of life and well-being.

“We need to shift the health paradigm from a reactive treatment approach to a more proactive, prevention-focused system that can improve quality of life and well being of the individual and the population at large. And this can only be achieved through effective consumer education, which needs to happen in Australia.”

 

Complex and valuable questions to solve

Flying Blind 2 points out that the more datasets researchers are able to link together, “the more complex and valuable are the questions they can hope to solve”.

“Supporting data-informed research using routinely de-identified, pre-linked or linkage-ready HMR datasets and unstructured data is an important part of improving Australia’s health,” it says.

“Potential benefits can also be realised through linkage of survey and clinical trial data with non-HMR datasets such as those relating to education or labour status.

“Linking numerous different sources of data can help identify the complex interplay of factors that lead to different diseases.”

As Australia has no single body coordinating management and preparation of healthcare datasets, the report adds, researchers often have to try to source data from State or Federal Government health departments or ministries; local health districts and
hospitals; clinical registries; and other contracted health services agencies.

“Most of these agencies have their own separate processes surrounding the access and linkage of data by researchers working in HMR, and this fragmentation is one of the major sources of much of the wasted time and effort experienced by those attempting to conduct HMR,” the report notes.

 

Ethics approvals are another core part

The report points out that university Human Research Ethics Committees (HRECs) review research proposals that involve human participants to ensure they are ethically acceptable and accord with guidelines such as the National Statement of Ethical Conduct in Human Research issued by the NHMRC.

HRECs, established by a range of public and private organisations but most commonly found in universities and hospitals, “present researchers with some difficulties”, the report says.

“Where research involves multiple datasets, researchers often need to apply individually to each HREC involved and obtain clearance from each one.

“Each HREC usually has its own request form, and these are notoriously long; they can be even longer if specific populations (such as Indigenous Australians) are involved.

“Not only that, but the vast majority of the information sought in each is duplicated: most ethics committees do not recognise approvals granted from other HRECs.”

Attempts have been made to alleviate these issues, it says, but “progress has been slow”.

“Ultimately, ethics approvals are designed to ensure that research does not harm participants – but when they lead to excessive delays in the provision of data for HMR, it may well be that they are acting against their mandate by delaying research that can actively benefit Australian health and wellbeing.”

Read the Flying Blind 2 report in full here