1618 Involving and engaging children, young people and carers in the ECHILD project

Background Involving children, young people and parents in research about them is essential. However, best practice specific to research involvement and engagement using administrative data is under-explored, yet particularly important given past high-profile cases of big data mismanagement and security breaches that have reduced public confidence. We describe our approach and interim findings from a programme of research involvement for the ECHILD (Education and Child Health Insight Linked Data) project. ECHILD links the Hospital Episode Statistics database with the National Pupil Database, to examine relationships between health and education for children and young people in England, with particular emphasis on understanding the impact of the Covid-19 pandemic on vulnerable groups. Objectives We planned a programme of child, young person, parent and public involvement and engagement throughout the duration of the project. Our objectives were to i) understand the diversity of views on linking these two datasets, ii) explore how definitions of 'vulnerability' might differ to those applied by Government Departments, and iii) identify priorities for research questions that can be answered by the linked dataset. Methods We accessed three standalone patient and public involvement groups comprising 30 children, young people and parents/carers through our partner, the National Children's Bureau (NCB). The groups were i) the Young Research Advisors, ii) the Family Research Advisory Group, and iii) FLARE, which is organised through the Council for Disabled Children and commissioned by the Department for Education. Sessions were online, semi-structured and facilitated by the NCB between August - December 2020. Content was captured through facilitator note-taking, flipchart paper with sticky notes and digital posts created by members in the groups. Results Children, young people and parents were keen to discuss the ECHILD Covid-19 project and have further ongoing engagement with project. Young people emphasised a need to raise awareness about the data that is routinely collected about them, and how it should contribute to research. They supported the use of the linked data - when in de-identified form and with secure access - for research to improve the health and education of children and young people. The term 'vulnerability' was rejected by all groups and, while consensus on an alternative was not reached, group members generally preferred terms that reflected 'additional service needs'. Young people were particularly concerned with the impact of school closures on mental health and would like future research to address this area Conclusions Engagement with children, young people and parents/carers is crucial to the ECHILD project and for inspiring trust in using linked administrative data for research. Our findings highlight the need for greater awareness of research using administrative data and that engagement should span the project lifetime. We have planned further meetings with these groups and other relevant stakeholders to ensure research conducted is timely and meets the needs of children and young people accessing health and education services.