Patient and health groups urge UK parliament to stay engaged on clinical trial reporting

Eleven patient and health groups today call on the newly elected Chair of the House of Commons Science and Technology Committee, Greg Clark MP, to "continue engaging on the issue of clinical trial transparency in the new Parliament".

Thanks to the previous Committee's strong engagement during 2018 and 2019, UK universities in particular have become global leaders in clinical trial transparency.

However, many trials still remain unreported. The UK has yet to put into place a comprehensive national monitoring system backed by effective sanctions to ensure that in future, all clinical trials are registered and make their results public in a timely fashion.

The letter notes that "the year 2020 offers a unique policy window for leveraging the current momentum to bring about the systemic changes required to resolve this issue once and for all."

Eleven patient and health groups have joined today's call for continued parliamentary engagement:

• Action against Medical Accidents

• Cochrane

• HealthWatch

• JustTreatment

• Sling the Mesh

• STOPAIDS

• T1International

• Transparency International Health Initiative

• TranspariMED

• Universities Allied for Essential Medicines Europe

• Universities Allied for Essential Medicines UK

Full text of the letter below.

Dear Mr Clark,

Congratulations on your election as Chair of the Science and Technology Committee.

The last Committee’s enquiry into clinical trial transparency resulted in substantial progress in reducing and preventing waste of medical research funds, and in filling gaps in the medical evidence base. We urge you to take up and continue this important work in the new Parliament.

Thanks to the Committee’s strong engagement, four times as many trial results were uploaded by UK universities in 2019 than during the four previous years combined, the national medicines regulator MHRA has updated registry entries, and the Health Research Authority is drawing up a transparency strategy. All of these developments will benefit UK taxpayers and NHS patients, and bolster the UK’s reputation as a global leader in medical research.

While significant progress has been achieved, the UK has yet to put into place a comprehensive national monitoring system backed by effective sanctions to ensure that in future, all clinical trials are registered and make their results public in a timely fashion.

As your predecessor Norman Lamb MP wrote in an open letter to the incoming Science and Technology Committee:

“We know the consequences of non-compliance with reporting requirements: wasted money and research, publication bias and risks to human health… The Committee’s work has led to a real momentum in this area, but there is a risk of this diminishing if scrutiny of relevant bodies and organisations is not maintained. This is particularly crucial as the Health Research Authority’s new Research Transparency Strategy (as recommended by the Committee) is expected in 2020 and will require further scrutiny by the Committee… I hope that you might be able to take up… this work in the new Parliament.”

The Committee’s work during 2018-2019 demonstrated that engagement by Parliament on this topic can have a strong positive impact on an issue of crucial importance for NHS patients, including the nearly one million NHS patients who volunteer to take part in clinical trials every year. The year 2020 offers a unique policy window for leveraging the current momentum to bring about the systemic changes required to resolve this issue once and for all.

We urge you to continue engaging on the issue of clinical trial transparency in the new Parliament.

For more information on how clinical trial transparency benefits patients, taxpayers and public health, please see this policy paper by Transparency International and Cochrane.

for UK parliament to stay engaged on clinical trial reporting