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This commentary is part of a series on practical research ethics and focuses on ‘coproduction’. Increasingly, research funders are asking for coproduced research. Here, we clarify this concept and the opportunities and practical challenges it can bring to paediatric research. Our commentary complements Preston et al’s1 article on how to involve children and young people in research.
What is coproduction?
Coproduction is sometimes thought of as innovative, but it has been around for a good while—even longer if you look for the concept rather than the term itself. Practically, it means researchers and patients prioritising and/or designing research together from the start.
Coproduction theory argues that knowledge arises from lived experiences, as well as meticulous scientific work, which in turn is influenced and constructed by peoples’ lives and interactions: ‘the ways in which we know and represent the world are inseparable from the ways in which we choose to live in it’ (p. 2).2 In the health context, knowledge is created in the interaction between science and the social world outside the laboratory, the hospital and the university.
This understanding of knowledge informs the practice of coproduction, which we focus on here. Central to this is research as a shared enterprise.
A good example is the groundbreaking research funded by the French Muscular Dystrophy Association (AFM-Téléthon: http://www.afm-telethon.com/). AFM-Téléthon was established in 1958 by parents of children with muscular dystrophy and has remained a patient-led organisation and a leading funder of research into the cure and care of neuromuscular conditions. In this organisation, patients and parents hold several roles. They are political agents working to improve the treatment of muscular dystrophy. They are active collaborators shaping the research. They volunteer as participants in research studies. For example, when little was known about this condition, parents played an instrumental role in evidencing …
Funding KL’s time on this article was supported by the National Institute for health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South West Peninsula (NIHR CLAHRC South West Peninsula). At the time of writing, HR’s post was part-supported by a grant from the Department of Health funded through the Children’s Policy Research Unit. Research at UCL Great Ormond Street Institute of Child Health and Great Ormond Street Hospital for Children receives a proportion of the funding from the Department of Health’s NIHR Biomedical Research Centres funding scheme.
Disclaimer The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. This is an independent (unfunded) think piece, and the views expressed are not necessarily those of UCL Great Ormond Street Institute of Child Health or its funders.
Competing interests None declared.
Provenance and peer review Commissioned; externally peer reviewed.
Patient consent for publication Not required.