Make all research results public | insight

"Successful conduct of clinical trials depends on many factors, but these studies are impossible unless patients agree to participate in them. For many patients the principal motivation for participating in clinical trials is the hope that they may receive better care, and perhaps more effective treatment. All participants in clinical trials, however, believe that their involvement will help to increase knowledge about the effects of treatments. They expect that people with health problems like theirs – and perhaps they themselves – will be able to make better informed treatment decisions in future as a result of their contributions to knowledge. How come, then, that the research community, including research funders and regulators, have acquiesced for decades in the nonpublication of around 50 per cent of all clinical trials? Can this be characterised as anything other than a gross betrayal of the trust in researchers which motivated volunteers to participate in clinical trials in the first place? ...  After doing research on biased under-reporting of research 20 years ago, I raised these issues in an article published in the Journal of the American Medical Association entitled ‘Underreporting research is scientific misconduct’. The evidence that has accumulated over the subsequent two decades has made clear that the problem is widespread ... Until recently, the academics who have exposed biased underreporting of research have had little or no effect in persuading people with the power to do something about this scandal to put an end to it ... So what has happened to change the terms of the debate after a quarter of a century during which researchers, research funders, research regulators and politicians have failed to address the problem seriously? Two things. First, Dr Ben Goldacre, the award-winning medical journalist, published Bad Pharma — a book making clear to the public, using a mountain of evidence, why they should be concerned about the situation ... Second, Sense about Science, an organisation campaigning to promote science to the public, has decided that non-publication of clinical trials is a stain on the public image of science, and that, after years of havering and disingenuous excuses for inaction, it must be confronted and dealt with. Following on its influential campaign to reform the English libel laws that were being used to silence scientists, Sense about Science’s new campaign — All trials registered, all trials reported — aims to achieve just what its title calls for. Sense about Science has invited those who agree with these principles to join the tens of thousands that have already signed the petition ... To its great credit, the MRC was the first organisation to do so, with these words: 'The MRC is pleased to sign up to this campaign and has, for many years, strongly supported the position that clinical trial results must be published in a timely manner. At the end of 2012, we made both the requirement to publish, and the need for MRC-funded researchers to share data, even more explicit: 'Results of MRC-funded clinical studies (whether positive or negative) must be published within a reasonable period (generally within a year of completion) following the conclusion of the study' ..."