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Published in Nature Mental Health, researchers from the University of Oxford and University College London (UCL) argue that while involving young people in research is vital, without a clear framework, these efforts - however well-intentioned - may risk doing more harm than good.
The team is calling for a more rigorous approach to patient and public involvement in child and adolescent mental health research, with clear conceptual and methodological foundations.
Major UK and international funders now strongly encourage integrated involvement of children and young people throughout the research lifecycle, including the grant development phase.
Participatory approaches are often justified on ethical grounds, ensuring that the public has a voice in research that impacts their health, or on epistemic grounds, improving the relevance and quality of research outcomes. However, the authors of the new paper argue that these justifications must be carefully examined, especially in the context of discovery science.
Led by University of Oxford’s Department of Psychiatry Professor Ilina Singh, NIHR Oxford Health Biomedical Research Centre (OH BRC) Flourishing and Wellbeing Theme Lead, and Professor Essi Viding, NIHR University College London Hospitals Biomedical Research Centre, and Professor Argyris Stringaris, Professor of Child and Adolescent Psychiatry at UCL, the team emphasises that they are not questioning the value of young people’s involvement. They cite examples from their own pioneering work, including ADHD Voices, BeGood EIE, and ReSET, which benefitted from meaningful PPIE input.
Instead, they ask whether discovery science funding streams should include Patient and Public Involvement and Engagement (PPIE) in all phases of research without more systematic reflection on its implications. They argue that widespread mandates may in some cases lead to a poor use of funds allocated for scientific discovery, and may unintentionally harm children and young people (e.g. through disappointment at perceived tokenism), researchers (e.g. through involvement in activities that take away from research or that they are not trained for), and the integrity of scientific outcomes (e.g. because of confusion or the pursuit of unscientific goals).
The authors call for stronger conceptual, theoretical, and methodological foundations for applying PPIE to discovery science and offer some research pathways to build such foundations. They also urge funders, researchers and lived experience experts to co-create a novel framework that enables transparent decision-making about what kind of knowledge is needed, for what purpose, and at what stage of the research process.
They also advocate for a transparent examination of both the benefits and potential harms of PPIE to science and to the people involved and set forth concrete ways of examining these. Only through such rigorous evaluation can participatory research be both ethically sound and scientifically robust. Professor Singh said:
We worry that without rigorous ethical underpinnings of concepts like ‘experts by experience’, PPIE can too easily become an expensive tick box exercise, which does not respect young people’s participation and will not progress understanding or treatment of mental health.
We believe a framework should be co-developed that enables genuine and accountable involvement and participation of young people in research, which means requiring that we evaluate when, why and how PPIE is needed to move discovery science forward.”
Professor Viding said: “Currently a substantial proportion of research funding and activity in mental health is being directed towards PPIE, and this is partly for good reasons. However, our view is that, in mental health as in other areas of healthcare, for example cancer, the extent of PPIE involvement should be judiciously determined on the basis of evidence for added value and ethical considerations.”
Professor Stringaris added: “Blanket requirements may lead to the devaluation of PPIE itself and the allocation of funding and researcher energy should be focused towards the discovery of desperately needed new treatments. In an environment of limited financial and other resources, we need to make sure that our scientific activities best serve the interests of the public.”