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Original research
Guidance on development and operation of Young Persons’ Advisory Groups
  1. Winnie Chan1,
  2. Pravheen Thurairajah1,
  3. Nancy Butcher2,
  4. Cor Oosterwijk3,
  5. Kim Wever3,
  6. Irmgard Eichler4,
  7. Charles Thompson5,
  8. Anne Junker6,
  9. Martin Offringa1,
  10. Jennifer Preston7
  1. 1 Child Health Evaluative Sciences, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada
  2. 2 Child Health Evaluative Sciences, Hospital for Sick Children, Toronto, Ontario, Canada
  3. 3 Dutch Genetic Alliance, VSOP, Soest, The Netherlands
  4. 4 Department of Paediatrics, European Medicines Agency and Enpr-EMA, London, UK
  5. 5 International Children’s Advisory Network (iCAN), Hartford, Connecticut, USA
  6. 6 Department of Pediatrics, The University of British Columbia, Vancouver, British Columbia, Canada
  7. 7 Women's and Children's Health, University of Liverpool School of Life Sciences, Liverpool, UK
  1. Correspondence to Jennifer Preston, Women's and Children's Health, University of Liverpool School of Life Sciences, Liverpool L12 2AP, UK; Jennifer.Preston{at}liverpool.ac.uk

Abstract

Background Engaging patients and the public as collaborators in research is increasingly recognised as important as such partnerships can help improve research relevance and acceptability. Young Persons’ Advisory Groups (YPAGs) provide a forum for clinical researchers and triallists to engage with children and young people on issues relevant to the design, conduct and translation of paediatric clinical trials. Until fairly recently, there was very little information available to guide the successful development and operation of YPAGs.

Objective To develop an evidence-based tool to guide clinical researchers and triallists in the establishment and operation of a YPAG.

Methods An online needs assessment survey was conducted using SurveyMonkey with 60 known paediatric drug researchers to identify knowledge gaps around YPAG engagement, development and operation. Semistructured interviews with founders and coordinators of five well-established existing YPAGs and a review of the literature were performed to identify best-practice processes for starting up and operating YPAG.

Results The majority of 12 survey respondents (20%) from 12 different centres indicated that while they felt YPAGs could benefit their research, guidance on how to develop and operate a YPAG was needed. Most preferred a web-based guidance tool. Ten core steps in starting up and operating a YPAG were identified and developed into an online YPAG guidance tool, now freely accessible for use by paediatric clinical researchers worldwide. Plans to evaluate the impact are in place.

Conclusions This novel tool, developed with an internationally based group of public involvement leads working across paediatric clinical research areas, provides harmonised guidance for researchers seeking to develop and operate YPAGs to help improve the quality and impact of paediatric clinical research studies.

  • patient perspective
  • children's rights
  • health services research

https://doi.org/10.1136/archdischild-2019-318517

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    Footnotes

    • WC and PT contributed equally.

    • Contributor Statement WC and PT contributed equally to this paper. WC, PT, MO and JP were responsible for the conception and design of the work. All authors were involved in the acquisition, analysis and/or interpretation of the data. WC, PT, NB, MO and JP drafted the paper; CO, KW, IE, CT, JP and AJ critically revised the paper for important intellectual content. All authors approved the final version of the paper. MO secured funding for this study and is accountable for all aspects of the work.

    • Funding The research leading to these results received funding from the European Union’s Seventh Framework Programme for research, technological development and demonstration under grant agreement no. 261060 (Global Research in Paediatrics GRiP network of excellence).

    • Competing interests None declared.

    • Patient consent for publication Not required.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data availability statement Data are available on reasonable request. Deidentified survey and interview data can be accessed by contacting winniewychan@gmail.com, who is one of the coauthors of this paper.