Re: Research is the future: get involved
“Now let’s make sure that patients are properly involved, not just as participants but in trial conception, design, and conduct and the analysis, reporting, and dissemination of results.” I completely agree, and children and young people should be no exception. Well-conducted clinical research with children and young people is essential if we are to improve our understanding of childhood disease, and provide healthcare based on the best possible evidence.
The Nuffield Council on Bioethics recently published a major report on children and clinical research (www.nuffieldbioethics.org/children), challenging the assumption that all children are necessarily vulnerable, an assumption that too often prevents research from going ahead. We concluded that a partnership with children, young people and parents throughout the whole endeavour of research - from deciding what research to prioritise, to the development and design of the research and to ethical review - was critical in ensuring that children were not placed in situations where they might be vulnerable.
Changes are needed if this approach is truly to be adopted. Amongst other things, Research Ethics Committees (RECs) should generally require researchers to involve children and parents in the development of their studies. The commercial sector should contribute to funding for groups like Young Persons’ Advisory Groups (YPAGs) that facilitate the involvement of children. We suggest that the UK Departments of Health, NHS and Universities UK should protect the time needed for experts in children’s healthcare to contribute to RECs. We also put forward additional guidance for researchers and those responsible for the scrutiny of research, to ensure that children’s voices are being heard at every step in the process.
The Council’s report and animation ‘Health Research – making the right decision for me’ can be found at www.nuffieldbioethics.org/children
Assistant Director, Nuffield Council on Bioethics
Competing interests: No competing interests