Let’s Talk CF: Establishing a Public Patient Involvement Panel within the Cork Centre for Cystic Fibrosis.

22 Oct 2025

The aim of this project was to establish a 3CF PPI team, which includes People with Cystic Fibrosis, their partners, parents, siblings, and even (adult >16 yrs old) children. 

Project Summary

The rationale for establishment of the 3CF PPI team was to allow PPI team members to contribute to both research and aspects of clinical care delivery within the adult CF centre in Cork University Hospital.

Advertisement materials for social media were developed and posted on social media, through the National Patient Organisation (Cystic Fibrosis Ireland), and on the Group Website. Reaching out to People with Cystic Fibrosis (PwCF) and family/caregivers directly resulted in eight team members joining the 3CF PPI Team (7 PwCF and one parent of an adult PwCF).

Three official online meetings were held to explore what PPI is, provide examples of where it has been used in both research and clinical care, and demonstrate the value it brings. These meetings were also used to develop a 3CF PPI Team Terms of Reference, and two follow-up meetings explored a team project of interest to the group.

The 3CF PPI Team is now established and already active in a research study. Having this PPI team has been an incredible asset for the service, both clinically and for research. Reaching the Cork CF community to recruit team members was a challenge, as there is no mailing list or widely used social media or communication platform outside of SMS/Phone. Other communication strategies are needed in future.

The establishment of a CF centre-specific PPI team is both innovative and meaningful as, to the best of our knowledge, this has not currently been achieved within CF care.