What is PPI?
Public and patient involvement (PPI) occurs when the public/patients work together in partnership with researchers in setting out priorities for research, in planning and managing research studies, as well as in summarising, distributing, sharing and putting results into practice. PPI can not only promote a sense of empowerment and value among patients, it can also enhance patient trust in researchers, improve researchers’ insights into their own research area, and help researchers identify barriers and come up with solutions in their research (Brett et al., 2014).
Why is PPI important?
PPI is crucial in translational research because in helps ensure that the real-life experiences of patients are being considered when decisions are being made about what research to do and how research should be conducted. Historically the CF community has had strong patient engagement with research, and this has been heightened in recent times with the advent of modulator treatments. Among our various aims, RECOVER is designed to specifically answer a range of important questions that have been raised by people with CF and the wider CF community (click here to read more about these specific questions).
The RECOVER PPI team have been involved throughout the study lead in period and will be involved right through till the end of the study.
Meet the PPI Team
Carolyn has a degree in Biochemistry and Masters in Food Science. She teaches Science and Biology in St. David’s Holy Faith. Most importantly she is a Mother of a 16-year-old boy with Cystic Fibrosis.
Caroline started working for CF Ireland in September 2007 as Patient Advocate on the Member’s Services Team. In her role as advocate she supports members from diagnosis through teenage years and into adult life. In addition to member advocacy, Caroline organises the annual conference and is involved with fundraising and raising awareness by visiting schools, colleges and medical institutes informing the public and future medical staff about aspects of living with CF. Previously Caroline worked for over 20 years as a liaison tutor for children with learning difficulties.
Benat aged 16, is from Dublin, Ireland. He is a secondary school student who lives with Cystic Fibrosis. Benat is strongly involved in the CF community through all the work he does as an Ambassador for Cystic Fibrosis Ireland and has a keen interest in CF research.