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 2018 Survey of Researchers demonstrated the importance and impact of involving parents in research and the value of Bliss' support.

Researchers who involved parents reported making changes to all aspects of their projects in response to parental involvement, and said involving parents had been very helpful, giving the experience an average score of 9 out of 10.

All stated they would involve parents in their research again, and that Bliss' support had been highly valued with an average score of 9.25 out of 10.

9.25 / 10

average score given by researchers rating Bliss' support

9 / 10

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

100%

researchers said they would involve parents in their research again

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