Think of MoreTrials as the “little-brother” of AllTrials
The story of AllTrials
For many years, one of us (Iain Chalmers) has been regularly pointing out a related problem with randomised trials. This problem is to do with transparency in that only around half of the results of trials get published, with trials with positive effects of treatment much more likely to be published. This leads to serious bias in the assessment of the effects of treatment, but despite regularly pointing this out nothing changed. Then, in just the last few years, everybody seemed to be talking about the problem with transparency and the need to fix it by registering all trials and making the results available at the end. So, the question you might have are:
Did drug regulators or governments lead this change? No.
Did industry or universities lead this change? Again, no.
OK then, what was the starting point for that change?
The change came about because a small charity that campaigns to ensure that the decisions that governments and others make on our behalf and that we make for ourselves are based upon robust evidence. Rather than doing what we previously did which was to shout louder at the likes of ICH and the regulatory authorities, Sense About Science started a public campaign to make the public aware of the problem. The AllTrials campaign with the help of people like Dr Ben Goldacre now has nearly 90,000 supporters and has resulted in rapid and permanent change. This change in regulation has been made by governments, drug regulators, industry and others, but the change was the result of the public campaign not by those making the change taking the initiative.
The public support for AllTrials was based upon the simple idea that we all want the treatment we receive to be based upon robust evidence. The case has been made that withholding the results of trials prevent this, but equally, not addressing uncertainties in the first place by doing randomised trials also means that important decisions about our health are not based upon robust evidence. So, about a year ago a few trialists in Oxford got together with Sense About Science, the campaigning charity behind AllTrials, to try to work out how we could make it much easier to do randomised trials.
In creating MoreTrials, we will partner with everybody involved in randomised trials to work together with us to develop a modern set of principles to conduct randomised trials. This will be done via this website in an entirely open and transparent manner so that everybody’s voice is heard. We choose this web platform as unlike most others it allows interaction and discussion in a variety of ways. Crucially, the voice of patients and the public needs to be heard both to ensure we get it right, but also to make our policymakers listen. As a small example, the ICH-GCP guideline still refers to trial participants as “subjects” and in their latest update has no plans to change this (even in Britain we stopped calling people “subjects” more than 30 years ago and, instead, now call them “citizens”).
If you want to learn more about AllTrials watch this TEDx talk by Sile Lane, director of campaigns and policy at Sense About Science.