Yesterday I joined colleagues from the Medicines for Children Research Network (MCRN) to present the report of the Generation R event last year, to the Chief Medical Officer (CMO), Professor Dame Sally Davies.
For many people Generation R at the Science Museum was the highlight of 2013. It was designed, organised and delivered by young people, one of whom, Nadia, joined us yesterday. She spoke movingly to Dame Sally about how honoured she felt to live in a country where it was possible for young people to be involved in research in such a way.
The report includes 11 recommendations.
#AllTrials campaigners will welcome the recommendations that: ‘Summary level results should be made publicly (open access) available for all clinical trials.’ And that: ‘A patient specific (confidential) results feedback sheet [should be made a (sic)] mandatory part of the research process (as is the Patient Information Leaflet).’
Other recommendations cover the desire to see more being done by the pharmaceutical industry to involve young people in research, and the need for a greater focus on clinical research in schools education. The latter sounds like one for Ben Goldacre.
MCRN, which is now highly influential internationally as well as at home, is already taking the lead in addressing the report’s first recommendation: ‘Ethical challenges of paediatric research: work with key stakeholders including parents and young people to identify solutions on tackling the major challenges.’ It has already linked-up with the Nuffield Council for Bioethics and the Royal College of Paediatrics and Child Health (RCPCH).
For INVOLVE’s part our advisory group have already highlighted young people’s involvement in research as a priority topics for this coming year. Perhaps you might have some good ideas on what we might do, resources permitting of course? Undoubtedly we will want to help bring people together from various organisations to keep the momentum up.
It was good to hear how personally supportive the CMO is of the Generation R initiative and young people’s involvement in research generally [the programme from Gen R last year was one of the brochures in the waiting room]. You will recall that young people were the focus of her annual report last year and that it includes a recommendation for their greater involving in designing clinical trials.
More power to our elbow. Let’s make it count.
You can also read the report by clicking on the picture below.