By London YPAG,
Recently, a meeting took place at the Nuffield Council on Bioethics in London entitled, ‘Exploring collaboration between life-sciences industry and young people to improve research’. From our Generation R side, in attendance were: Erin Walker, facilitator of the London YPAG and Orlane Doumbe, a London YPAG member; Jenny Preston, facilitator of the Liverpool YPAG and one of their members, Robyn Challinor, and; Carly Green, facilitator of the West Midlands YPAG. Our old allies Katharine Wright (Assistant Director, Nuffield Council on Bioethics), Dr William van’t Hoff (NIHR Clinical Research Network: Clinical Director for NHS Engagement and one of the pioneers of YPAG), and Simon Denegri (National Director for Patients and the Public in Research, NIHR) were in attendance as well, and heavily involved in shaping the meeting agenda. The meeting was a pioneering effort to bring together stakeholders in paediatric medical research, including ethicists, representatives from the Generation R initiative (including young people), and individuals from drug companies such as GSK, Roche, and ABPI.
This was an interesting mix of people who were all interested in one thing: how involvement of children and young people can benefit health research. A report has just been published about the meeting with an aspirational statement on how industry can and should go about involving children and young people in their research. This blog post can’t do justice to the eloquence of the report, but I will attempt to summarize some key points…
It is important to note that these challenges do not strictly apply to commercial research, rather they are a feature of most PPI with children and young people.
This felt like a very positive meeting and the young people who attended, Robyn and Orlane, were warmly received. They were asked lots of questions in the breaks about their work with their respective YPAGs, and about their views on children and young people collaborating with industry. These conversations, and the meeting overall, has started a crucially important discussion and we are grateful to the Nuffield Council on Bioethics for inviting us to have our voices heard.