New Zealand is now assessing whether publicly funded clinical trials have been registered and their results made public. In parallel, the country is conducting a broader review of its clinical trial systems and data infrastructure.
The national drive to improve trial transparency is the result of advocacy by the local anti-corruption group Transparency International New Zealand in collaboration with patient advocate Charlotte Korte from the Consumer Advocacy Alliance.
From a blog by TI New Zealand:
“In 2019 TINZ’s CEO Julie Haggie and Charlotte Korte together, with the support of TranspariMED, advocated to influence the NZ Health Research Council and the Ministry of Health to recommend that New Zealand sign up to the WHO Joint statement on public disclosure of results from clinical trials.
This statement commits the signatories to the early registration of any [interventional] research study involving human subjects into a publicly accessible database. It also commits parties to ensuring that researchers make research results publicly available in a timely manner (negative and inconclusive as well as positive results).
In July 2020 the Ministry of Health advised that the WHO had added the Health Research Council as a signatory to the WHO Joint Statement.
Currently, whilst there appears to be reasonably good registration of clinical trials, not all are registered prospectively, and there is no mandating of reporting on results. TranspariMED - who are working to end evidence distortion in medicine - report “huge transparency gaps in New Zealand clinical trials.” Compliance has not been well monitored and lack of compliance has not been sanctioned.
So what has changed since the signing of the WHO Joint Statement? Did we make a difference?
In 2020 the Health Research Council partnered with the Ministry of Health to co-fund a study on clinical trial systems and data infrastructure in New Zealand’s public healthcare system. The report from this research is due to be launched some time in the next few months and the recommendations will be directed specifically to the Ministry of Health, Te Whatu Ora (Health NZ) and Te Aka Whai Ora (the Māori Health Authority) to implement.
We also hear that we can expect to see in the near future publication of a research article that reports on Health Research Council funded RCTs between 1999-2017 and investigates trial registration, results publication, and time-to-publication in the near future.
A challenge for moving at greater speed than probably should have occurred is that we are dependent on the resourcing and technical competency of the Australian New Zealand Clinical Trials Registry (ANZCTR). This is a worthy initiative but needs to be developed into a more seamless tool enabling registration and results reporting across Australasia.
So, some progress, more to be done, and congratulations to the Ministry of Health, Health Research Council and civil society advocates for the progress that has been made.”
Till Bruckner, founder of TranspariMED, said:
“The response by the NZ Health Research Council to local advocacy groups was fantastic. The Council essentially said, ‘this is a great idea, we’ll do it’ – and now they are delivering on their promises.”
“While public funders worldwide are increasingly tracking whether trials are registered and reported, the scope of New Zealand’s review is unprecedented, going all the way back to 1999.”
“This is wonderful news for the patients who participated in these trials. Hopefully, many trial results that have fallen between the cracks during past years will soon be made public.”
Patient advocate Charlotte Korte can be reached on Twitter.
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