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The aim is to explore young adults' perspectives on the use of neonatal data from the National Neonatal Research Database.

February 6, 2026BMJ Paediatrics OpenOpen Access

Perspectives of young people on the use of neonatal data in the UK national neonatal research database: a patient and public involvement project

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The aim is to explore young adults' perspectives on the use of neonatal data from the National Neonatal Research Database.
Established a Young Persons’ Advisory Group with fifteen young adults having lived experience of neonatal care.
Conducted online focus groups with 10 group members to discuss the NNRD.
Utilized thematic analysis co-produced with group members.
Young people expressed strong interest in understanding how their data are used.
Participants felt pride in the contribution of their data to improve neonatal care.
They proposed strategies to increase awareness of the NNRD's existence.

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Qualitative project explores young adults' views on neonatal data use, highlighting trust and awareness issues.

Lodder et al. (2026) studied this question.

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