"What is data?" Learnings from paediatric patient and sibling involvement in co-producing a research communication tool for children and young people.

Authors

Laura J Smith, Adam Cavill, Angus McKinney, Poppy Smith, Tsz-Yan Milly Lo, Intensive-Share Group

Published in

Research involvement and engagement. Volume 12. Issue 1. Jul 17, 2026. Epub Jul 17, 2026.

Abstract

Empowering children and young people (CYP) to actively participate in research development is essential to ensure impactful outcomes. Meaningful involvement helps researchers to pose relevant questions, design acceptable methodologies, and disseminate findings effectively. However, the inclusion of CYP in research, particularly in paediatric intensive care (PIC), is rarely reported. This is partly due to the challenging PIC environment, and most patient and public involvement and engagement activities (PPIE) focus only on the parents' experience and perspective. The Intensive-Share group was established in Scotland in 2022 to facilitate PPIE activity in PIC research. The group includes family members with a range of lived experiences with the youngest member aged 7 years. They meet regularly to contribute to various aspects of research including research design, study materials and procedures, and public engagement. This article describes the co-production approach adopted in the 'What is data?' Project, which was co-created with researchers based on an idea from the Intensive-Share group. The project aimed to co-develop a short-animated video to explain healthcare data research to CYP in an engaging and accessible format. CYP meaningfully participated in all stages of the project and were integral to its success. Initial evaluations indicated the animation was well-received by families and they self-reported improved understanding of and willingness to participate in research. Co-production with CYP can be resource-intensive and challenging, but this project demonstrated it was feasible and incredibly valuable. Meaningful and authentic involvement challenged the research teams assumptions on inclusive language and the nature and level of involvement CYP preferred. Adopting a broader approach to PPIE in PIC research to include paediatric patients and siblings, perhaps on a national level, could facilitate similar initiatives in research communication and co-production. The open-source animated video is available as a resource to the wider research community to aid communication about paediatric healthcare data research.

PMID:
42469929
Bibliographic data and abstract were imported from PubMed on 18 Jul 2026.

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