Involving the public in research

We want to make sure the experiences of families are listened to and learnt from.

We actively encourage parents, relatives and ex-neonatal patients to be involved in research from the early design stages through to the final stages of the project.

By working with researchers and people affected by a baby being born premature or sick we want to ensure that research is looking at the things the public feel are important, and that research is carried out in a family-friendly way.

We have also created a Public Involvement Role Description Template for researchers to use when considering involving people with lived experience in their work.

“Being involved in neonatal research is a very interesting and rewarding experience. It is important to consult parents with personal experience as it can provide a greater insight”

Ella Selby, a parent involved in the Cooling and Feeding study supported by Bliss.

Our 2019 Survey of Researchers demonstrates the importance and impact of involving members of the public in research and the value of Bliss' support.

More than 1000 members of the public were involved in research that Bliss supported in 2019. Parents, relatives and ex-neonatal patients got involved in determining research questions, designing research projects, participating in PPI (Patient and Public Involvement) groups, sitting on steering group committee meetings and even acting as co-applicants on research projects.

"Public involvement has augmented my understanding of the multiple roles parents and carers of preterm and ill babies undertake."

Dr Tilly Pillay, Senior Neonatologist for New Cross Hospital, Royal Wolverhampton NHS Trust and Chief Investigator for the OPTI-PREM study, supported by Bliss

9.2 / 10

was the average score given by researchers rating how helpful they found parent involvement

10 / 10

was the average score given by researchers rating Bliss' support

I have been fortunate enough to work in partnership with parents in neonatal research for many years, and Bliss have been absolutely crucial in supporting this.

Dr Chris Gale, Consultant Neonatologist at Chelsea and Westminster Foundation Trust and lead researcher on the Cooling and Feeding and NeoEPOCH studies, supported by Bliss.

If you would like to know more about how Bliss helps to recruit people with lived experience to be involved in research, see our information on Bliss' approach to research.

Further guidance on patient and public involvement in research can be found on the INVOLVE website