Making research central to good paediatric practice

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.

Children and young people’s contributions to public involvement and engagement activities in health-related research: A scoping review

“…Although there is some good evidence being produced [ 2 , 5 ] and many positive impacts arising from PPIE are reported, there is limited empirical ‘proof’ of the impact of PPIE on the quality of research [ 6 – 8 ]. Genuine PPIE is increasingly accepted as a necessary and fundamental component of well-designed and executed research [ 9 , 10 ] that has meaningful benefits for patients [ 11 ]; yet, despite this, meaningful PPIE in research is neither consistently nor effectively utilised within all studies.…”

Research in practice: fitting it together

“…How to deliver this, including navigating the ethical frameworks and Research in practice a framework to design and review research involving children, is outlined in a recent series of articles in Archives of Disease in Childhood. [26][27][28][29]…”

European research networks to facilitate drug research in children

“…[4][5][6] A structured approach overcomes fragmentation of stakeholders, provides a consistent framework for all stages of drug development, speeds up research by using the same systems and processes for each trial, enhances quality, and can ensure that the voices of patients and caregivers are heard. 7 i. Context: sufficient drivers and incentives to make drug development appealing to investors in commercial and public sectors, including a clear path from approvals to market; proportionate regulations.…”