Research examining clinical trials in Australia has found that data sharing must be improved if we are to solve some of Australia’s big health problems.

An analysis of the clinical trials held in Australia over a 14-year period has found that health services and state health departments need to improve data and information sharing.

A Perspective, published in the Medical Journal of Australia, examined Australian clinical trial activity from 2006 to 2020, outlining the characteristics and trends of trials in Australia and suggesting areas for further enquiry.

According to lead author Dr Lene Seidler, a senior research fellow and biostatistician at the National Health and Medical Research Council Clinical Trials Centre at the University of Sydney, the results were pleasing.

“We’ve had almost 20 000 trials with almost 9 million participants in the last 16 years,” Dr Seidler said.

“That compares well to other OECD countries as well. So Australia is doing really well in having a vibrant clinical trials landscape.”

But there were areas for improvement, particularly data sharing.

Improving learnings from Australian clinical trials - Featured Image
The research found about 23% of Australian trials say they intend to share data. DC Studio / Shutterstock

How to improve collaboration

When research processes, data, and dissemination are more transparent, it can not only improve health outcomes but also public trust in science.

“That’s a really big theme in research at the moment that we need to get better at being transparent and sharing our data. Working together to address big health problems,” Dr Seider explained.

The research found about 23% of Australian trials say they intend to share data, which is a similar rate internationally.

“But it’s just not good enough,” Dr Seidler said.

According to the Perspective, there are many advantages to sharing data.

“New research questions can be answered without new recruitment, and more nuanced data can be accessed to inform clinical practice guidelines,” the authors wrote.

However, Dr Seidler said part of the problem is the way the academic system works.

“We live in a really competitive system. How to survive in the research world, how to get funding and how to move to the top … People see it as they put all this work in, they want to be the ones publishing,” Dr Seidler said.

“I think we need institutions, funding agencies to recognise shared data that I’ve created as a valuable output that can then also count in this really harsh academic system,” she suggested.

There are signs that this is changing.

“The biggest funder in the United States, the National Institutes of Health, has just made it mandatory that researchers have to share their data if they’re publicly funded. We haven’t seen something like that happening yet in Australia. That’s something we’d really like to see,” Dr Seidler said.

What isn’t being researched enough?

The most studied health conditions based on the number of trials in Australia were cancer (20%), mental health (13%), and cardiovascular disease (10%).

“Compared with burden of disease, cancer and cardiovascular trials seem to be well represented, whereas mental health, neurological and musculoskeletal trials seem to include fewer participants than expected,” the authors wrote.

According to Dr Seidler, part of the reason is that these areas are not as well represented by industry research.

“We’ve seen very different research being conducted by industry compared to through public funding. So while industry is more frequently drug trials, more frequently invested in treatment and prevention, it usually has to have a chance of generating some profits for industry,” she explained.

“Some of the way we treat mental health would be through behavioural therapy. That’s something where we may see less industry research and really needs public funding to back that up,” she said.

In commenting on the Perspective for InSight+, Distinguished Professor of Paediatrics Professor Elizabeth Elliott said it is harder to get clinical trials research funding for her areas of interest – paediatrics and rare diseases.

“It’s historically been very difficult to get funding for trials in those groups, for funding for medications, because a lot of medication trials are funded by pharmaceutical companies,” Professor Elliott said.

“They have been very reluctant to fund trials which are likely to result in little economic return to them. In other words, if there are small numbers, as there are of children or small numbers of people with rare diseases, it hasn’t been worth the investment,” she said.

The importance of public funding

Which is why continued public funding of clinical trials is so important, the Perspective authors explained.

“I think what we’re really seeing is we need public funding, with the main goal to improve health, not to generate profits, to target these kinds of areas that are unlikely to generate profit. Rare diseases are prime example of that,” Dr Seidler said.

Rare diseases are those that affect fewer than five per 10 000 individuals in the general population. However, collectively they’re common, with around 2 million Australians affected by around 7000 rare diseases.

Professor Elliott hopes a combination of public funding and continued collaboration will make a difference for rare disease research.  

“The hope for the future with rare diseases is that, internationally, many people are forming rare disease registries. When a disease is very infrequent, to get the appropriate numbers for trials to be meaningful, you need to use multicentre sources,” she explained.

According to Dr Seidler, there needs to be more diversity in clinical research to improve health outcomes.

“That includes diversity of funding, diversity of health areas, diversity of representation who’s in the trial.

“Having a bit more of an awareness of that and starting to track that better would be great,” she concluded.

Read the Perspective in the Medical Journal of Australia.

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