Patient and Public Involvement
Patient and Public Involvement (PPI) is defined as:
Doing research with or by people who use healthcare services rather than to, about or for them.
This includes, working with people to decide what research should be done, offering advice as members of a group, and commenting on and developing research materials.
We made sure we had PPI input into the initial study design but we are now looking to expand our PPI group to continue to help and advise the Cleft@18-23 research team.
The group will consist of:
- 12-15 members
- individuals aged 22-30 years old
- those born with cleft lip/palate with lived experience of receiving their cleft treatment in the UK
- individuals from a diverse range of backgrounds that represent the cleft community of young adults born with cleft lip and /or palate
Training will be provided.
If you are interested in joining the group, please email us:
More information can be found here: PPI flyer (PDF, 129kB)
In line with NIHR guidance, PPI members will be offered up to £25 per hour in recognition for their time spent on the study. This could include, reviewing study materials and attending PPI meetings.
I love being part of an inclusive group where we can make a change to cleft research and help more people understand what life is like with a cleft. It gives my whole journey, my experiences, my fears and worries all purpose as I feel I can offer advice from my own life….The group is really welcoming, warm and vibrant...Joining the group has helped me find more confidence in my cleft and feel less alone in my adult cleft life as well as meeting new professionals and helping future research in the cleft field be more accurate.