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Nuffield Council on Bioethics Industry meeting

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…

  • There is potential for great benefit in collaboration between industry and children and young people. This can help to ensure research questions are relevant to those children and young people that a research project is about; the design of a study, and how it is delivered, considers the needs of the children and young person; less time and money is wasted with study recruitment if it is designed with children and young people in mind; and the innate curiosity of children and young people can be nurtured with this exposure to life sciences that they wouldn’t otherwise receive in mainstream education.
  •  There are still great challenges in how children and young people can collaborate with industry. These include such things as:
    • Getting key people to recognise the benefit of engagement with children and young people, and patients.
    • Identifying who in a company is responsible for this engagement and collaboration.
    • A fundamental lack of knowledge, and uncertainty, around the concepts of ‘involvement’ and ‘engagement’.
    • Perceived conflicts of interest.
    • How, and from whom, should input be sought?
    • Risk of loss of trust (e.g. if a study doesn’t work in the end, or a new medicine is approved but not funded)
    • Timelines can be very challenging
    • Finding a secure funding mechanism for collaboration

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.

  • The group decided it is possible to set an ideal of involving children and young people in industry research.

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.