Volunteering to be a part of a clinical trial is a noble thing to do. It’s all about making a difference to people’s lives and helping to advance scientific understanding of different conditions and diseases. If you’ve volunteered in a trial before, did you wish you had more information about what happened at the end of the trial? There is a call for better communication between those who run trials and their participants. Trial participants want to and should expect to be informed about the results of the trial, the outcome and the impact. But how can often complex scientific data be communicated effectively to trial participants?
It is, in fact, an ethical duty to communicate the results of trials to those who participate in them according to the 2008 Helsinki Declaration. Leading doctors also believe that engaging participants from inception right through to the end point is crucial. Trials often have a high number of enrolled participants drop out and retention is often tricky. If there was a greater contribution from patients and more focus on the social, emotional and financial impacts of volunteering, the whole process could become more transparent and easier for all involved. This could improve retention and recruitment levels.
How to engage more with trial participants?
Many studies in Europe and the United States are published and free to read on international databases. However, with the majority of the public deemed as ‘scientifically illiterate’, analysing the results of trials that contain complex data and vocabulary can be extremely difficult. In 2019, new requirements were initiated in the EU Clinical Trials Regulations that all publishers must provide a breakdown of the results in language understood by lay people. To find out how you can be a part of Clinical Trial Volunteers, visit a site like https://www.trials4us.co.uk
Whilst these summaries are not explicitly aimed at trial participants, they could be a useful tool in encouraging greater communication and understanding for those involved in the process as volunteers. It is advised that such summaries be written to a level that a person who finished senior school would be able to comprehend.
Another way to improve feedback between trial organisers and their patients is to change the way they see the volunteers and act more as if they were an audience or stakeholders in the process. A direct correspondence and thanks should be provided to all those who volunteered, as suggested by The Communications Handbook for Clinical Trials. Each trial should have a detailed communications plan and consider innovative ways to communicate such as websites, social media, newsletters and direct correspondence.
A great deal of research has gone into ways to improve communication between those who run trials and those who volunteer for them. While much focus in the past has been on recruitment, now there are efforts to improve the experience for active participants. Many believe that engaging and informing on the outcomes of trials is more than just a courtesy but can encourage greater community participation too.