Children and young people with experience of paediatric intensive care have worked alongside researchers from the Usher Institute to co-produce an accessible animation explaining how healthcare data is used in research. Published in Research Involvement and Engagement, the paper describes the 'What is data?' project, led by researchers from the Usher Institute's Centre for Medical Informatics in partnership with the Intensive-Share patient and public involvement group. The project brought together children and young people aged seven to 17, including former paediatric intensive care patients and their siblings, to develop an engaging animated video that explains healthcare data research in language that children can understand. The idea for the project came directly from members of the Intensive-Share group after they asked researchers a simple question: "What is data?" Working together throughout the project, the children and young people helped shape every stage of the animation, from the storyboard and script to the visuals and voiceover. Their feedback challenged researchers' assumptions about what young audiences find accessible and highlighted the importance of involving children directly, rather than relying solely on parents' perspectives. The animation was evaluated with families and young people who were not involved in its development. Feedback showed that it improved understanding of healthcare data research and increased families' willingness to consider taking part in future research. This project really helped me to realise the importance of checking young people’s understanding of the jargon we use. We must not assume that just because the young people have been in hospitals and heard these words before, they will know what they mean! Dr Tsz-Yan Milly Lo Consultant Paediatric Intensivist, Usher Institute We are incredibly grateful to the young people who brought their ideas, creativity and lived experience to this project. Their input shaped the animation at every stage and showed us just how much we can learn when we listen directly to young people. We hope this work will inspire more researchers to involve young people in shaping how research is communicated. Dr Laura Smith Patient and Public Involvement and Engagement Co-Lead and Research Group Coordinator, Usher Institute The researchers say the project demonstrates that meaningful involvement of children and young people in research is both feasible and valuable, particularly in paediatric intensive care where patient voices are often underrepresented. They hope the freely available animation will help researchers communicate more effectively with children and families about healthcare data research. The open-source animation, Understanding Healthcare Data & Research for Young People, is available for researchers and healthcare organisations to use when communicating with children and families about paediatric healthcare data research. Cite as Smith, L.J., Cavill, A., McKinney, A. et al. “What is data?” Learnings from paediatric patient and sibling involvement in co-producing a research communication tool for children and young people. Res Involv Engagem 12, 115 (2026). https://doi.org/10.1186/s40900-026-00924-2 Further information “What is data?” Learnings from paediatric patient and sibling involvement in co-producing a research communication tool for children and young people | Research Involvement and Engagement | Springer Nature Link This article was published on Monday 17 August 2026
