Bronchiectasis patients in action to improve lives

In the run-up to our 3rd bronchiectasis patient conference on 12 March, this month’s patient spotlight focuses on the ELF Bronchiectasis Patient Advisory Group (PAG). As one of our first PAGs, they have been involved in a range of educational and awareness raising activities.   

How did the Bronchiectasis PAG get started? 

ELF began collaborating with EMBARC, the European network promoting research and education in bronchiectasis, in 2014, when the network received ERS support as a Clinical Research Collaboration.  

To embed patient involvement in EMBARC’s future plans and projects, we set up a Patient Advisory Group (PAG) by using existing patient contacts and patients recommended by clinicians. We now have 20 people from 12 countries actively involved to ensure that patient voices are at the heart of projects. There are also around 30 people on our bronchiectasis e-panel to provide input by email when required.  

Our purpose? 

The main aims of the PAG are to:  

  • raise awareness of bronchiectasis 
  • educate patients and healthcare professionals 
  • provide information for patients to manage their condition and to engage productively with healthcare professionals 
  • work with healthcare professionals and researchers to find out more about bronchiectasis and develop treatments. 

What we want to highlight about bronchiectasis 

Why bronchiectasis happens is not fully understood. Bronchiectasis can begin in childhood or later in life. How bad it is varies considerably and although there is no cure, it is treatable. It is really important for patients to understand their illness as self-care is crucial in managing the disease. 

Our greatest achievements 

We are proud to have collaborated with EMBARC on: 

  • research priorities for bronchiectasis 
  • developing information for people with bronchiectasis in English, French and Dutch
  • developing a lay summary of the bronchiectasis guideline 
  • producing the bronchiectasis patient checklist 
  • providing travel guidance for people with bronchiectasis
  • planning the programme and participating in our annual patient conferences
  • speaking at international healthcare conferences to share our experiences.  

What we are working on now 

The 3rd Bronchiectasis patient conference takes place virtually on 12 March. Many of us are taking part as speakers and session chairs – come along to find out more about bronchiectasis. Register. 

We are developing a bronchiectasis self-care guide to support individuals to do those things they can do for themselves to help with their condition. It will be launched this summer.  

We are planning a webinar for World Bronchiectasis Day (1 July 2023) where there will be a chance to ask questions about bronchiectasis directly to a panel of clinicians, physiotherapists and patients.  

Why we recommend being part of a PAG 

Being part of a group like ours is a way of finding something positive from a negative experience.  Taking part in meetings and conferences helps build our knowledge and keeps us up-to-date with the latest breakthroughs in research and treatment.  

It encourages us as we collaborate with committed bronchiectasis experts, sharing our experiences with them and seeing the influence we can have on research and future treatments. 

Living with bronchiectasis day in, day out, can be a very lonely and difficult place. Being part of the PAG means we meet others in similar situations; we share and compare how treatment differs, learning from each other and feeling less alone.  

Get in touch 

If you would like to find out more about joining the ELF bronchiectasis PAG or e-panel contact