Learn what it is like to be in a PAG – an experience from the Bronchiectasis PAG


Who can join a PAG?


Most of the PAGs are open to new members from European countries. We would like to hear from you if you:

  • Are over 18 and have experience of living with one of the conditions listed below, for example as a patient or a carer.
  • Are resident in a European country.
  • Can communicate in English (spoken and written) – although we plan to eventually offer more opportunities for people to communicate in their native language as we develop the tools to do this.
  • Are interested in improving healthcare and treatment across Europe.
  • Are willing to share your perspective on living with your condition.
  • Have access to a computer and the internet.

We currently have PAGs in these areas:


Aspergillosis

The Aspergillosis PAG is working with the CPAnet (Chronic Pulmonary Aspergillosis) network of doctors and scientists to help improve diagnosis and care. The PAG are involved in setting research priorities and in identifying information and education gaps for patients and healthcare professionals.

Asthma

The Asthma PAG works closely with members of SHARP, the pan-European network of healthcare professionals, scientists and industry partners promoting research and education in severe asthma. They work together on a range of projects to improve understanding and treatment, such as surveys to understand patients’ experiences and designing new research studies to better capture the impact of asthma on an individual’s life.

Bronchiectasis

The Bronchiectasis PAG works closely with members of EMBARC, the pan-European network of healthcare professionals and scientists promoting research and education in bronchiectasis. They work collaboratively on a range of projects to raise awareness of, and to improve the management of bronchiectasis including the development of bronchiectasis patient information (www.europeanlunginfo.org/bronchiectasis), the organisation of a bronchiectasis patient conference and a number of patient surveys.

Childhood bronchiectasis

The Childhood Bronchiectasis PAG works to improve the care and management of children with bronchiectasis through close working with healthcare professionals to develop international guidelines and identify priorities for research.

Children’s Interstitial Lung Disease (ChILD)

The ChILD PAG has produced a factsheet and information for parents of children with interstitial lung disease (ChILD) – a term that covers a large group of rare lung diseases, to help raise awareness. See www.europeanlunginfo.org/child.

Chronic cough

The Chronic Cough PAG is working with the NEUROCOUGH project, which aims to improve the care and treatment of people with chronic cough and raise awareness about it. They have also recently helped to produce lay guidelines for the treatment of chronic cough [link], and a chronic cough ‘patient journey’ to help clinicians understand patients’ needs.

COPD

The chronic obstructive pulmonary disease or COPD PAG works to improve research and care for COPD, with a particular focus on exacerbations or flare-ups. They work closely with healthcare professionals and researchers to identify what aspects of COPD exacerbations affect patients the most, and to improve awareness and education for professionals.

COVID-19

The COVID-19 PAG is working with several COVID-19-related projects. These include the DRAGON project which aims to use artificial intelligence (AI) and machine learning to deliver a decision support system for precise coronavirus diagnosis using CT scanning. It also aims to be able to better predict the outcomes of patients. Visit the DRAGON website. Patients have helped to produce a survey to understand how people use COVID-19 apps, are helping to plan a DRAGON conference, and have helped the project learn more about patients’ views on topics such as ethics, long COVID and information needs.

Lung cancer

The Lung Cancer PAG is currently involved in a number of projects that aim to improve care and treatment for people with lung cancer. These include a Task Force that is producing guidelines for quality lung cancer care, and a project that aims to collect data about lung cancer patients across Europe, and then use this data to improve knowledge and provide better care. The PAG has been helping researchers to understand what aspects of the research are most important to patients.

Pulmonary fibrosis (PF)

The PF PAG is discussing their priorities and producing proposals for activities that they can realistically achieve in the areas of early diagnosis, quality of life and access to oxygen.

Primary ciliary dyskinesia (PCD)

The PCD PAG is working with the BEAT-PCD (Better Experimental Approaches to Treat Primary Ciliary Dyskinesia) network of clinicians and scientists to help improve diagnosis and care. The PAG are involved in research activities and in identifying information and education gaps for patients and healthcare professionals.

Sarcoidosis

The Sarcoidosis PAG works to raise awareness of this multi-systemic disease and to improve diagnosis, treatment and care. They have been involved in developing information and resources at www.europeanlunginfo.org/sarcoidosis and inputting into treatment guidelines.

Sleep Apnoea

The Sleep PAG is currently involved in a Task Force which is producing technical standards for devices used by patients at home to monitor and collect data about sleep. They have also recently helped to produce guidelines for different sleep apnoea treatments and how they compare to CPAP, and a statement on sleep apnoea and driving.

What is expected of me as a PAG member?


As a member of a PAG, we will ask you to share your views on living with your condition, including how it affects your daily life, your thoughts on treatment and aspects of your condition that may not have been studied.
The groups meet by teleconference/videoconference and communicate by email. Representatives from the group may also be invited to some face-to-face meetings in Europe. But if your health needs would make it difficult for you to attend a face-to-face meeting, we will support you to attend remotely.

PAG members must agree to keep confidential all information about the content and development of the projects they are involved with until the outcomes are published at the end of the project.

What can I expect as a PAG member?


ELF will provide support, guidance and training to help you share your perspective and get involved in projects.

We will cover any costs for getting involved, such as telephone calls, travel and accommodation costs. Please note that this is a voluntary role and we are unable to pay for your time.

You can read about the aims, membership and practical arrangements of our PAGs in our PAG Terms of Reference.

Patient Advisory Group terms of reference

If you are interested in joining a PAG or would like further information, please get in touch.

Contact us
Sign up to our newsletter