What is PPI?
Public and patient involvement (PPI) occurs when the public/patients work together in a partnership with researchers in 1. setting out priorities for research, 2. planning and managing research studies, as well as 3. 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 introduction 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.
Please click here if you would like to know more about our members of the PPI group.
We recently asked our members of the PPI group why should others get involved in PPI and here is what they had to say;
“PPI really offers significant opportunities for you to offer your valuable opinion and feedback on a range of topics that patients typically would never be involved in. Being able to see suggestions you have made and feedback you gave come through in different areas of RECOVER is a rewarding feeling knowing it will help patients”
“As a Parent of a CF son, I was delighted to be included in the RECOVER Study. It has been a very interesting learning process to see how many stages of organisation are needed to set up a study across so many hospitals. Being a participant has given me great insight on data collection, clinical challenges and the collaboration between Consultants and their Teams. Comments and feedback is always welcome from the PPI representatives at meetings too. Studies like RECOVER are so important to see how beneficial new drugs are for the Health of people with Cystic Fibrosis, it is a pleasure to assist in anyway.”
“I believe having an all inclusive approach to research from conception is vitally important on all projects. I believe both researchers and patient representatives bring valuable discussion and information to the table. Equal collaboration strengthens a project, that impact the pathway of the research and benefit the patient group.”