British universities have become European leaders in clinical trial transparency, and their performance continues to improve at breakneck speed.
The top five European universities in terms of reporting clinical trial results are all British, and their track record is impressive:
Meanwhile, across Europe, violation of EU transparency rules for clinical trials is still the sad norm. With the sole exception of Radboud University in the Netherlands, no major medical research university in continental Europe has posted the results of more than 20% of its due clinical trials onto the European trial registry,
The UK government is now working to put into place a comprehensive national clinical trial monitoring system.
This is expected to track every single clinical trial conducted on UK soil – including commercial trials and multi-country trials – to ensure that it is registered and reports its results.
Supporting these efforts:
The Health Research Authority has recently hired a person for six months to develop a national transparency strategy, and has set up a transparency committee that includes representatives from industry, academia, and civil society.
In parallel, the UK's national medicines regulator, the MHRA, is systematically updating the status of all older trials falsely listed as still "ongoing" on the EU trials registry. This will allow doctors and patients to quickly identify trials that are recruiting participants.
Following the lead of public funder MRC, both NIHR and Wellcome Trust are setting up systems to monitor whether the trials they fund have posted results.
Meanwhile, TranspariMED and Health Action International are lobbying the European Medicines Agency to make the uploading of trial results easier for universities.
Why are UK institutions finally taking clinical trial transparency seriously?
Pressure from research funders: Britain’s two public medical research funding bodies, the NIHR and the MRC, as well as the non-profit Wellcome Trust, in 2017 all signed the WHO Joint Statement on Public Disclosure of Results from Clinical Trials. By signing up, these funders committed themselves to adopting policies on trial registration and trial reporting that are in line with WHO best practices, and monitoring their grantees’ compliance with these rules. (The MRC has already conducted an excellent review of the clinical trials it has funded.) In future, UK universities that fail to post the results of trials onto registries on time may no longer be able to access funding.
Public pressure: A loose coalition of health integrity groups convened by TranspariMED that included Universities Allied for Essential Medicines (UAEM-UK), Transparency International Health, HealthWatch UK, STOPAIDS, and the patient-led group JustTreatment engaged with parliament, the media and directly with universities to press for better trial reporting. TranspariMED and UAEM-UK jointly published several reports documenting the performance of individual UK universities. In parallel, the AllTrials campaign strongly campaigned on the issue, including by regularly emailing its over 90,000 supporters. The EBM Data Lab at the University of Oxford, which is linked to the AllTrials campaign (and which built the EU Trials Tracker), directly supplied the parliamentary Committee with data on individual universities’ performance.
Parliamentary pressure: UK parliament's Science and Technology Committee held an enquiry into research integrity during 2018-2019. Committee members were shocked and appalled to discover that many universities were routinely violating European Union trial reporting rules. Following lobbying by TranspariMED and its allies, the Committee decided to publish a stand-alone report on clinical trial transparency with strong recommendations. In early 2019, the Chairman of the Committee wrote to all UK universities and NHS Trusts warning them that if they did not upload their missing trial results by summer 2019, they would be called before the Committee to explain themselves. This final move was a complete game changer.
Some UK universities have uploaded dozens of clinical trial results onto the European trial registry in record time.
For example, King’s College London improved its reporting rate from 18% to 93% within only half a year. The University of Nottingham was singled out by the parliamentary Committee for its weak performance in 2018; it has now posted the summary results of over 95% of its trials.
As far as TranspariMED is aware, every single medical university in the UK is currently working hard to upload missing clinical trial results onto the EU registry. In many cases, universities have also begun uploading results onto other registries, notably ISRCTN and the US registry Clinicaltrials.gov, bringing them fully in line with global best practices set out by the WHO.
The positive example of UK universities shows that where there is a will, there is a way.
Other universities in Europe can post their clinical trial results too... if and when they decide to do so.
Universities that want to improve their clinical trial transparency can use TranspariMED's collection of transparency tools to strengthen their policies, processes and performance.