CF Telehealth Public Patient Involvement (PPI) Expression of Interest

Hello my name is Tamara and I am a Digital-Health Post-Doctoral researcher working with the adult CF team (3CF) in Cork University Hospital. You can click here to learn more about me, and click here to learn more about our CF team. During the pandemic, our unit setup a telehealth service to support PwCF to receive care safely. Telehealth is a term that can mean a lot of things, but at its simplest it is virtual consultations between a patient and their care team (for example Webex, AttendAnywhere, WhatsApp video call, phone call).

We conducted a research study that looked into what PwCF and the CF team at Cork thought of telehealth, and had some very positive results. We also got some great suggestions on where else telehealth could be used to support PwCF and their families.

Since then, we have done a few in depth literature reviews, and learnt a lot about CF telehealth but there still seems to be a lot that the CF scientific community don’t know about guidelines and how to setup a telehealth service. To learn more about this, we are setting up a European Cystic Fibrosis Symposium (ECFS) working group to try and learn more, and to pool as much knowledge together as possible to create guidelines.

As part of this, we hope to have some Public Patient Involvement (PPI) contributors join our research team and help us. To find out more, download the information sheet below and email: tamara.vagg@ucc.ie