Involving children, young people, families in our research

Call overview and agenda

An online discussion on the topic of involving children, young people and families in Imperial BRC research was hosted on 8th April 2021 (4pm to 5pm) via Zoom. The meeting was attended by 14 members of the NIHR Imperial Biomedical Research Centre Public Advisory Panel.

The aim of this particular online session was to:

• Introduce the topic and main areas of research
• Q&A
• Facilitate small group discussions exploring the topic further with panel members

Summary of Key Insights

This following is a summary of the themes identified in breakout room discussions, more details of which are set out in the full report.

Enabling all children to be involved/participate in research

Panel members recommended that schools and young childhood education facilities were integral with which to engage, raise awareness of research and utilise their resources e.g. wifi and existing relationships with children and parents to access participants and conduct research. Utilising electronic health record (EHR) data was supported but the need for consent was emphasized. Parents, families, and siblings as well as young children should be engaged and involved and engagement with children should be age appropriate. Links should be made with maternity and health visiting teams as well as the third sector. Children should be given access to their data to improve its quality and health inequalities should also be considered and addressed in relation to child health.

Importance of personalised medicine for children

With regard to the importance of personalised medicine for children, panel members were generally supportive with one being surprised that it was not already taking place for young children. Suggestions were made for future research areas including research into treatment for new-borns and a predictive tool to help identify those at risk. The importance of long- term outcomes for children were emphasized. Relieving the burden on the NHS and families both in cost and other ways e.g. psychological impact was considered important as was personalising care to a child’s unmet needs as well as taking an integrated care approach to personalised medicine.

Focus on “common diseases”

Panel members considered that obesity was common and should be addressed.  The importance of prevention was discussed and the need to recognise that there are a variety of causes for disease including environmental, social, genetic, and also potentially human error. Rare and more common diseases were considered to need equal focus and collaboration with other stakeholders e.g. GOSH should be undertaken to improve data.

How we used the insights

This insight report summarising key points from the session was made available to researchers and the BRC Executive in order to shape the BRC application. The report was also provided to the Panel members who took part in the involvement activity. A full report on all public involvement activities undertaken in preparation for the BRC application can be found here.

We would like to thank all those members of the public who gave their time and thoughtful insights through these activities, and the researchers who engaged enthusiastically in the process.