Public and Patient Involvement (PPI)

Public and Patient Involvement (PPI) in the research process ensures that research is meaningful and of benefit to those directly and indirectly affected by CF. PPI creates a partnership between people affected by CF and researchers. It is more than a tokenistic gesture to comply with policy but can provide a real and substantial benefit to all key stakeholders.

PPI can:

• Promote a sense of empowerment and value among children and families
• Enhance patient and parent trust in researchers
• Improve researcher insight into their own research area
• Help researchers identify barriers and come up with solutions
• Increase trust and acceptability in the CF community of research findings
• Improve the dialogue between healthcare professionals and patient and parents

The ENHANCE PPI Group

The ENHANCE PPI group is comprised of membership from CF Ireland and Cystic Fibrosis Trust in the UK. The ENHANCE PPI team was established at the point where the study idea was being developed. The team were instrumental in advising the study leads on the type of aspects of the study that should be included, the frequency of visits and types of measures, and the relationships between study teams and participants. The PPI group will maintain involvement over the entire course of the study. The group will advise on effective study conduct, and guide strategies for recruitment and retention of study participants. The group will also advise on ongoing dissemination and communication of study findings, including on this website. We want ENHANCE to become an example of how we can maximise the benefit to the CF community of engagement in study design, ongoing management and dissemination.

This page is in development. Check back for further updates.