PPIE Winner of the Public Involvement in Research Competition 2025 Announced
Dr Annemarie Lodder, Research Fellow in Parent, Patient and Public Involvement and Engagement, has won this year’s NIHR Imperial BRC Public Involvement in Research Competition. Her project, From Neonatal to Now: Young People’s Voices in Neonatal Research, placed young people’s voices at the heart of neonatal research.
Background
Every year, around one in ten babies in the UK requires specialist neonatal care, often because they are born sick or too early. During this time, their health information is securely recorded in the National Neonatal Research Database (NNRD), which has supported vital research and improvements in care since 2007. However, until now, no one had asked the people behind this data what they think about how it is used.
The Project: From Neonatal to Now
To address this gap, Dr Lodder set up a Young People’s Advisory Group, bringing together young adults aged 17–24 years who spent time in neonatal care as babies. Recruitment took place through charities, parent networks, and social media, resulting in a diverse group of fifteen young people.
Through workshops, focus groups, and creative activities, including poetry, illustration, and co-design, the group shared their perspectives on neonatal data, identity, and research priorities. They also helped shape academic posters, co-presented at journal clubs, and co-authored a research paper, ensuring their voices were central to the work.
Key Insights
The young people expressed a strong desire to know whether their data is held in the NNRD and how it has been used. For many, this information is deeply personal, linked not just to their medical history but to their family story and sense of identity. They suggested clear, meaningful ways to communicate this, such as:
- Digital certificates
- Posters in neonatal units
- Public-facing updates showing how neonatal data contributes to research and care
Impact and Next Steps
As a direct result of this project:
- A co-designed certificate is now in development to recognise parents and patients and acknowledge their contribution to the NNRD and its research.
- The work has led to new NIHR funding to grow the group, increase diversity, and explore young people’s views on data linkage and research priorities.
- The next phase will involve co-developing a research question using the NNRD—and ultimately, working together to answer it.
Voices from the Group
One young participant exclaimed, “I was in the NICU for three months and this is the only information I get from my parents because they do not really want to tell me much; it feels so secretive. But I want to know.”
Another added, “It was really unique and great to meet people from different experiences, but how we all shared similar experiences in the NICU.”
Looking Ahead
The research team hopes this model of partnership becomes standard practice across neonatal research, ensuring that young people with lived experience are not only included but lead in shaping research that uses their data.
