Skip to main content

Research Repository

Advanced Search

“A little (PPI) MAGIC can take you a long way” : involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961)

Abrehart, Nichola; Frost, Kate; YPAG, Young Persons Advisory Group; Harris, Roy; Wragg, Andrew; Stewart, Derek; Sharif, Hayfa; Matthews, Rachel; Marciani, Luca

“A little (PPI) MAGIC can take you a long way” : involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961) Thumbnail


Authors

Kate Frost

Young Persons Advisory Group YPAG

Roy Harris

Andrew Wragg

Derek Stewart

Hayfa Sharif

Rachel Matthews

Profile Image

LUCA MARCIANI LUCA.MARCIANI@NOTTINGHAM.AC.UK
Professor of Gastrointestinal Imaging



Abstract

Background: There is often a great urgency to be inclusive when conducting research and to focus efforts with groups and communities that can be referred to as marginalised. This is especially the case in research concerning medical devices aimed at children and young people (CYP). Although involvement methodology has developed over the last two decades, it can be challenging to involve and engage CYP with confidence and clarity of purpose.

Main Body: Our aim was to provide a reflective narrative account of the involvement of CYP, over a period of 5 years, in a research project from conception of a new paediatric medical device through to practical application. We explored a model of patient and public involvement (PPI) through the Nottingham Young Persons Advisory Group (YPAG), part of the National Institute for Health Research (NIHR) GenerationR Alliance, in a NIHR funded research project.
The YPAG designed and created a model of the human gut, co-designed the TransicapTM mini-capsules and their packaging, co-produced patient information sheets, came up with the idea to disseminate through a project website and co-wrote and created animation videos. The YPAG involvement continued through the writing and award of the follow-on research grant (MAGIC2). During this process the YPAG modified the clinical study protocol insisting that all participants in the control arm were given the imaging test results as well, save for a delayed reading compared to the intervention arm.

Conclusion: Involvement of the YPAG over the last 5 years, led to the development of a mutually beneficial partnership, enabling genuine knowledge exchange between researchers and CYP. This influenced the design, plans and actions of the MAGIC study and well into the subsequent MAGIC2 follow-on project. Moreover, these involvement models applied within a feasibility study setting, have enhanced the realism and pragmatism of the study, contributing to the project's overall success.

Citation

Abrehart, N., Frost, K., YPAG, Y. P. A. G., Harris, R., Wragg, A., Stewart, D., …Marciani, L. (2021). “A little (PPI) MAGIC can take you a long way” : involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961). Research Involvement and Engagement, 7, Article 2. https://doi.org/10.1186/s40900-020-00243-0

Journal Article Type Commentary
Acceptance Date Nov 30, 2020
Online Publication Date Jan 6, 2021
Publication Date Jan 6, 2021
Deposit Date Dec 4, 2020
Publicly Available Date Mar 29, 2024
Journal Research Involvement and Engagement
Electronic ISSN 2056-7529
Publisher Springer Verlag
Peer Reviewed Peer Reviewed
Volume 7
Article Number 2
DOI https://doi.org/10.1186/s40900-020-00243-0
Public URL https://nottingham-repository.worktribe.com/output/5100087
Publisher URL https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-020-00243-0