In the latest edition of News Beat, we shared an update on our Cystic Fibrosis 'Back in the Driving Seat' Appeal which is now in full swing. We're funding the development of a digital platform for people with cystic fibrosis (CF) to give them greater control over their care and lives.

The Department for Cystic Fibrosis has been busy working with patients to understand what functionality they are looking for from the platform. Typically, this collaborative design process involves bringing people together for shared discussion. But due to the issue of cross-infection between people with CF, the team have been using technology to collaborate remotely.

Jo Acharya, a patient at Royal Brompton, has been trialling the platform. "I have been involved in the ‘Back in the Driving Seat’ campaign since the beginning, trialling self-monitoring equipment and virtual clinics as well as answering surveys and taking part in a virtual discussion with staff at the Brompton and other CF patients to share ideas and feedback about the new digital platform.

This has been a really exciting process and it’s great that the views of people with CF are being valued and prioritised. Travelling to the hospital for clinics is time-consuming and exhausting, and keeping on top of all the ‘CF admin’ as well as our treatments can be tiring and stressful. 

To me, the platform has the potential to make life much easier for us by grouping a lot of that in one place and reducing the number of face-to-face clinics we have to attend. I have already noticed a significant impact from monitoring my health at home; I understand my CF better and can more easily see how different factors affect my lung function. I believe it has contributed to my health becoming more stable and I'm really excited to see how the new platform will offer even more ways to take control of my health."

To find out how you can support this transformative appeal, click here.