Engaging and involving young people and families in development of the Young People’s BioResource

Launched in 2021, the programme aims to build a library of biological samples and health and lifestyle data from children and young people to support health researchers conducting clinical research.

Young people

Working with partners at the Anna Freud National Centre for Children and Families (Anna Freud Centre), the Young People’s BioResource (YPBR) team have initially been working with seven schools to recruit 11–15-year-olds, with consent from a parent/guardian.

To thank participating schools, and to introduce students to genetics and health research, Principal Investigator (PI) for the YPBR, Dr Anna Moore, headed to Birmingham earlier this month to visit Ninestiles Academy and King Edward VI High School. Dr Moore delivered an interactive science lesson to year 7 and 8 students, including an experiment to extract DNA from a strawberry. The procedure uses an extraction buffer and ethanol to isolate strands of strawberry DNA, giving students a glimpse into the role of genetics and DNA in the make-up of different organisms. Students and teachers at both schools were delighted to take part.

Mr Alex Hughes, Principal at Ninestiles Academy, said:

“I know the students took a huge amount away from this session and really enjoyed taking part in the experiment.

“I was delighted to hear that Dr Moore was impressed with the children’s level of interest and knowledge.”
Anna Moore
Dr Anna Moore met year 7 and 8 Ninestiles Academy students in Birmingham

Along with generating excitement and support for the programme, it is essential that young people and their families - the intended participants and beneficiaries of the YPBR - are active contributors to the planning, design and delivery of the programme.

A group of 13-17-year-olds from the Herts Young People’s Advisory Group (YPAG), a branch of GenerationR, were invited to share their thoughts on the best strategy and methods to reach young people, and their feedback on YPBR study documents. Having been introduced to the programme and discussed the anticipated benefits to their peer group, Herts YPAG are keen to continue contributing to the programme as it evolves, and the study team are incredibly grateful for their time so far.

To seek additional feedback from young people and families regarding many aspects of the YPBR design and strategy, the team reached out to two focus groups involved in Timely, a young people’s mental health research project from our partners at the University of Cambridge and Anna Freud Centre. Both sessions covered topics relating to engagement, recruitment, incentives, ethics and more. The success of YPBR will depend on engagement, trust and participation from young people and parents, and these focus groups highlight the variety of concerns and priorities that both parties bring to the table.  

To continue involving young people in the delivery and expansion of YPBR, the Anna Freud Centre will be leading on the YPBR ‘Young Ambassador Programme’. The participation project will support a group of young people to promote the aims of the YPBR to their peers and to support recruitment. From September, Ambassadors will be recruited from the schools that are currently participating in the YPBR, with an initial target of 10 students serving as Young Ambassadors.

Herts Young People's Advisory Group (YPAG) meet the YPBR team on Zoom

Along with their valuable support in recruiting new volunteers and raising awareness of the YPBR amongst their peers, the Young Ambassadors will receive formal training in all areas of the project, as well as transferrable skills such as public speaking. Young Ambassadors will have their time on the programme accredited through the AQA Unit Award Scheme, a formal way of recognising their achievements, and be reimbursed for their time. 

Participant involvement will continue to be at the heart of the Young People’s BioResource as the programme expands its schools-based recruitment this year and towards a national launch of online recruitment in early 2023. The Young People’s BioResource team at the NIHR BioResource are incredibly grateful to all young people, parents and school staff who have contributed to the programme up to this point, including GenerationR/Herts YPAG, and our partners at the Anna Freud Centre for their ongoing support. 

There will be important updates in the coming weeks and months regarding the expansion of the YPBR and the launch of our Young Ambassadors Programme, so please look out for announcements soon!

Want to make a difference?

If you join us, you are helping to speed the progress of medical research. Every one of us makes a difference.

If you are a young person interested in participating in the Young People’s BioResource, you can find out more on our Young People’s information page.  

There are also more details available on our information pages for parents/guardians or teachers.  

We’d love to hear from you! If you have any questions regarding how to take part as a volunteer, or enrol your school, or details of our Young Ambassadors Programme and other public involvement groups, please email the YPBR team on yp@bioresource.nihr.ac.uk 

If you are 16 or over and interested in contributing to vital health research by volunteering with the NIHR BioResource, you can find out more about signing up to the NIHR BioResource today.