Learning from the experts – our patients
Researchers at Queen Mary, University of London are working with patients to encourage different generations to learn together about the world of clinical trials.
The project – TrialsConnect – has brought together a group of clinical trials patients who will be using their experience to promote public understanding of, and engagement in, clinical trials.
The group’s first event takes place at Queen Mary’s Charterhouse Square campus tomorrow (10 July) and will see researchers and about 50 clinical trial patients sharing their experiences with over 100 students – ranging from sixth-formers and American undergraduates to mature learners from the University of the Third Age (U3A).
The programme for the day includes a formal presentation on the work of the research centre but also an 'active storytelling' session in which audience members will take on various roles – such as the research doctor, the statistician, the pharmaceutical company representative, the ethics committee member, and patients – and be led through the process of a clinical trial.
The work is coordinated by Dr David Collier, senior research fellow and Joint Clinical Director of the William Harvey Clinical Research Centre, at Barts and The London School of Medicine and Dentistry, Queen Mary.
Dr Collier said: "We have run several events involving our patients since 2003, at which I have been impressed with how well they understand the place of clinical research but also how interesting all their personal stories are.
“Patients involved in clinical research are not usually participating to benefit themselves but for future generations. Even when trials don’t produce the results we all want, patients have shown a deep understanding of what was going on. TrialsConnect is bringing those generations together to share stories and ideas in really exciting new ways."
Most of the students taking part in the day have just completed AS levels and are planning to study medicine. Around 30 undergraduates from The Florida State University (FSU) studying at the FSU London Centre on a summer programme in Health Psychology will also be attending.
Vernon Trafford, chair of the William Harvey Clinical Research Centre’s Public and Patient Advisory Group (PPAG), said: "At a meeting of the patients from a trial I was on several years ago I offered to collect some of our stories so that we could share more widely our very positive experience of being involved in this research work. I am delighted that we are now finding ways, through the PPAG and TrialsConnect to contribute to the wider public education and engagement around clinical trials."
Paul Bowers Isaacson, a member of the TrialsConnect coordinating group, said: “I have taught students about clinical trials for GCSE and A Level – even been involved in writing textbooks for them – but experiencing several trials as a patient has still added hugely to my knowledge and understanding. At this TrialsConnect day we are bringing young students together with patients alongside older generations who will have different experience again.”
A video about taking part in clinical trials featuring Dr Collier and including some of the patients involved in TrialsConnect, can be viewed here. http://www.youtube.com/watch?v=2pAbq3suyTE
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