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Making research central to good paediatric practice
  1. Hugh T Davies1,
  2. Bob Phillips2,3,
  3. Jennifer Preston4,
  4. Simon R Stones5
  1. 1 Health Research Authority, London, UK
  2. 2 Department of Paediatric Oncology, Leeds Children’s Hospital, Leeds, UK
  3. 3 Centre for Reviews and Dissemination, University of York, York, UK
  4. 4 NIHR Alder Hey Clinical Research Facility, Alder Hey Children’s NHS Foundation Trust, Liverpool, UK
  5. 5 School of Healthcare, University of Leeds, Leeds, UK
  1. Correspondence to Dr Bob Phillips, Centre for Reviews and Dissemination, University of York, York YO10 5DD, UK; bob.phillips{at}doctors.org.uk

Abstract

There is evidence abroad of a cautious if not protective approach to research involving children and young people (CYP). We are sensitive to these views but believe they are based on a misconception that we must address together. In this introductory article we look at the complexities and risks of this research, how we must involving CYP and their families in the all aspects of research, how to seek valid consent and assent and how research findings should be reported. Considering how we should conduct this ongoing debate, we outline seven principles that we believe should underpin the necessary dialogue between all with legitimate interest. Our debate should be: (1) evidence informed: arguments should be supported by appropriate and reasonably accurate factual claims; (2) transparent about the grounds for decisions; (3) balanced: arguments should be met by contrary arguments; (4) conscientious: we must be willing to talk and listen, with civility and respect; (5) substantive: arguments should be considered sincerely on their merits, not on how they are made or by who is making them; (6) comprehensive: all points of view held by significant portions of the population should receive attention; and (7) with procedures for revising decisions in light of challenges, and it should be our responsibility to ensure we have met all of these.

  • ethics
  • health services research

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Footnotes

  • Contributors HTD, BP, JP and SRS all designed and debated the series of articles, made editorial comments and assure the validity of the content. HTD drafted this article initially, with comment and involvement from all authors.

  • Funding This work was not specifically funded by any public or private body. BP is funded by the NIHR Research Trainees Coordinating Centre (grant number 10872).

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Commissioned; externally peer reviewed.

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