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

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. Actively involving children and young people (CYP) in research development is essential for research to have an impact. CYP can help ensure communication about research is understandable, engaging and addresses what is important to them. However, there are very few reports of involving CYP in developing research information, particularly in paediatric intensive care (PIC). Most examples focus on parents, not on the valuable perspectives of paediatric patients and their siblings. To address this, the Intensive-Share group was established in Scotland in 2022. The group includes families with a range of experiences of PIC. Members meet regularly to contribute to various aspects of research development including project questions, the way projects are carried out (methodology), and sharing research findings with the public. This article shares experiences from the ‘What is data?’ Project which was created through a partnership between researchers and the Intensive-Share group. The project took a co-production approach to develop a short-animated video to help CYP understand how healthcare data is used for research. CYP had important roles in all stages of the project, particularly in ensuring the language in the animation was accessible and relevant. The animation was well-received by families and they reported it improved their understanding of healthcare data research. The project underscores the value of involving CYP in research communication, not just parents, and research teams would benefit from resources to support such initiatives. The animation is an open-source resource to aid researchers communicating with families about healthcare data research.