The AllTrials initiative calls for all clinical trials to be reported and for the “full methods and the results” of each trial to be published.
Currently negative results are poorly recorded and positive results are overhyped, leading to what Goldacre calls ‘research fraud’, misleading doctors about the drugs they are prescribing and misleading patients about the drugs they are taking.
There have been some big wins in the past 48 hours. The lead legislator for a new EU Clinical Trials Regulation recently came out in favour of transparency for clinical trials. Today GlaxoSmithKline announced their support for the campaign, which, as Goldacre says, is “huge, and internationally huge”.
As well as continuing to push for stronger policies and practises that support the release of information about clinical trials, we would like to see a public repository of reports and results that doctors, patients and researchers can access and add to. We need an open database of clinical trials.
Over the past few days we’ve been corresponding with Ben and others on the AllTrials about how we might be able to work together to create such a database – building on the prototyping work that was presented at last year’s Strata event.
Dr. Jonathan Gray is Lecturer in Critical Infrastructure Studies at the Department of Digital Humanities, King’s College London, where he is currently writing a book on data worlds. He is also Cofounder of the Public Data Lab; and Research Associate at the Digital Methods Initiative (University of Amsterdam) and the médialab (Sciences Po, Paris). More about his work can be found at jonathangray.org and he tweets at @jwyg.