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

Background The secondary uses of routinely recorded data have become an important component of health research. The UK National Neonatal Research Database (NNRD), established in 2007 contains routinely recorded data from approximately 1.6 million babies who received care in NHS neonatal units in England, Wales and Scotland. The earliest included infants are now adults. We aimed to explore their perspectives on the existence and use of the NNRD Methods As part of a wider Public and Patient Involvement programme, we established a Young Persons’ Advisory Group: “From Neonate to NOW”. Fifteen young adults with lived experience of neonatal care were recruited to share their views and inform neonatal research priorities. We held online focus groups with 10 members to explore their views on the NNRD. Analysis was thematic and co-produced with two group members. Results Young people expressed a strong desire to know how their data have been used. Their wish to understand more about their start in life revealed that the NNRD carries meaning beyond data. Participants described pride in knowing their data contribute to improving neonatal care yet were surprised that they had never heard of the NNRD. They proposed ways to raise awareness of its existence and value. The main themes identified were knowledge and pride, early and clear communication, meaning and identity, and consent and clarity. Conclusions As the use of large datasets of routinely recorded health information becomes increasingly common, questions about awareness, consent and trust will become important, especially as the first waves of children represented in them reach adulthood. This study is among the first to explore how young adults with lived experience of neonatal care view the secondary uses of their data. Their perspectives highlight areas to address as we move toward a future shaped by big data in healthcare research.