Plain and simple: informing the public about clinical trials

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Posted on behalf of Helene Faure

Clinical trials have been in the spotlight for a number of months in the UK, from the publications of Dr Ben Goldacre to the launch of the AllTrials campaign to demand public listings of all clinical trials (read an interview in the BioMed Central magazine Biome), from a major Parliament Enquiry to the Health Research Authority – which looks after the interest of trial participants – insisting on timely reporting of trials.

Plainly and simply, there is a general consensus that scientific information and results around clinical trials should be made more accessible and understandable to the general public. Not only research funders and policy makers but publishers have a role to play in making this vision happen. A short article published in the journal Trials looks at a number of recent initiatives in the UK and explains how a publisher such as BioMed Central is approaching the task.

Because of its open access model, BioMed Central strongly supports all aspects of trial reporting, from protocol to results and from positive to negative findings. The path towards evidence-based decisions starts with the declaration of as many trials as possible and this is made possible through the ISRCTN register. However making sure that a wealth of scientific findings is simply made available is not enough – the information must be understandable. The trial register has a dedicated field that that will contain a description of the trial in plain English.

Our article discusses the small survey that took place in order to assess whether trialists would be willing to pay for a professionally written summary. As the demand for plain English summaries does exist and resources might be limited, another approach is to make sure that there are guidance documents at all stages of the research cycle and that is what the National Institute for Health Research has been working on.