Children and young people under the age of 16 are increasingly making their voices heard when it comes to research, a research participant survey shows.
The National Institute for Health and Care Research (NIHR) runs the Participant in Research Experience Survey (PRES) annually. The data collected provides the most comprehensive barometer of people's experiences taking part in research - while helping the NIHR put participant experience at the heart of research delivery.
Making young people’s voices heard
In 2024/25, there were 2,604 responses to the survey from young people aged 0 to 15. This is the highest ever number of responses from this cohort, and a 40% increase on 2023/24.
Of the children and young people that took part:
- 92% felt that their participation was valued by research staff
- 76% of them said they were kept updated about their research study
- 80% of them said they knew how to find out the results of the study
Feedback from 2021/2022 showed that study information was often too complicated for children. Research teams have been working hard to share information that is clear and accessible. Efforts to improve this have led to consistent levels of positive feedback in this area.
As a result, 87% of children and young people said they would be happy to take part in research again.
Logan’s story
One research participant is Logan, 12, from Norfolk. He took part in a type 1 diabetes screening study taking place at Smithdon High School, where he is a pupil.
The ELSA study is open to families across the UK for children aged 3 to 13. It is taking place in schools to make it easier for children to get involved.
Pupils whose parents and guardians agree to the study have a simple finger stick blood test. Tests on the blood then show if the children have any of 4 antibodies, which are markers found in the blood, for type 1 diabetes.
Where children are found to be at risk of developing type 1 diabetes, they can be monitored and supported. This will reduce the risk of them becoming seriously unwell.
Logan said: “It was really easy taking part and the people were really nice to me. I'm really happy to take part in research, because in the future I can help people by having this test.”
Importance of collecting feedback from participants
The latest PRES report looked at findings from 1 April 2024 to 31 March 2025.
As well highlighting the positive experiences of children and young people, a survey of 29,664 adult participants found:
- 91% would be happy to take part in research again
- 94% of adults said they felt well informed at the start of the study
- 93% felt that researchers valued their contribution
Now in its tenth year, PRES gives study teams valuable insight on the experience they provide. This year’s report summarises the findings.
Take part in research
Children and young people under the age of 18 can find more than 1,000 studies they could take part in using our study search tool.
These studies cover a variety of conditions such as type 1 diabetes, eczema and vaccines for infectious diseases such as meningitis. Healthy volunteers are also encouraged to take part too.
If you are over 18, you can sign up to Be Part of Research to be contacted about a range of health and care research.
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