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

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.