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Coproduction and coproducing research with children and their parents
  1. Kristin Liabo1,
  2. Helen Roberts2
  1. 1 PenCLAHRC Patient and Public Involvement Team, University of Exeter College of Medicine and Health, Exeter, UK
  2. 2 Population, Policy and Practice Programme, UCL Great Ormond Street Institute of Child Health, London, UK
  1. Correspondence to Dr Kristin Liabo, PenCLAHRC Patient and Public Involvement Team, University of Exeter College of Medicine and Health - St Luke’s Campus, Exeter EX1 2LU, UK; k.liabo{at}exeter.ac.uk

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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 …

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