Our Patient Advisory Groups or PAGs are made up of people who have an interest in a particular lung condition or topic related to lung health. Members share their views and get involved in projects to help improve treatment and healthcare.
The Chronic Obstructive Pulmonary Disease (COPD) PAG work to improve research and care for COPD. They work closely with healthcare professionals and researchers to identify which aspects of COPD exacerbations affect patients the most, and to improve awareness for professionals.
More information on COPDPAGs are set up to contribute to ELF and ERS priority-setting, and input into projects such as Task Forces and Clinical Research Collaborations (CRCs). PAGs may also contribute to other initiatives such as EU projects and ERS assemblies. Some PAGs may initiate their own patient-driven projects.
The COPD PAG work closely with healthcare professionals and researchers to improve research and care for COPD. Learn more about their activities here:
The annual ERS Congress can provide a number of opportunities for ELF PAGs. COPD PAG members have played an important role in ensuring that patients have a platform and a voice at the event.
Members of the COPD PAG share their experiences and input into the EU PAL-COPD project. This project aims to understand how end-of-life care can be improved for COPD patients and Lungs Europe, the collaboration between ELF and the European Respiratory Society, is a partner in the project.
The involvement of the COPD PAG is critical to make the voices of patients heard within research.
Some members of the COPD PAG are involved in the CONNECT clinical research collaboration (CRC), which was launched by the European Respiratory Society in 2023.
The focus of this CRC is on digital health. The group plan and conduct studies to assess the impact of using technology within healthcare and how to overcome the barriers associated with implementing this for the future.
Members of the COPD PAG contributed to a chapter within the European Respiratory Society monograph titled ‘COPD in the 21st Century.’ They shared their experiences of living with the condition and their priorities for future research and care.
Please note, these are paid-for publications. Electronic versions of the Monographs and Handbooks can be purchased via ebooks.com or Google Play. Print copies of the Monographs and Handbooks are available at ersbookshop.com
PAG members come together to share their experiences of living with the condition, including how it can affect daily life, thoughts on treatment and other areas of patient advocacy. The group meets every 6-8 weeks by video conference and communicates regularly via email. Meet our PAG members here.
Pieter joined the ELF COPD Patient Advisory Group after being diagnosed with the condition. He has taken part in research, including the Longfonds Accelerate programme focussing on lung regeneration. He is currently taking part in CONNECT, a European Respiratory Society clinical research collaboration (CRC) which focusses on digital health.
Pieter also volunteers for Longfonds as a patient representative.
Tessa joined the COPD PAG due to her interest in respiratory conditions and supporting patients. Alongside her role in ELF, she is associated with several other organisations, including: Asthma and Lung UK, Breathe Easy Westminster and the National Institute for Health Research (NIHR).
Irene was diagnosed with moderate chronic obstructive pulmonary disease (COPD) at the age of 75. Since then, she has been trying to adapt her lifestyle and manage her symptoms.
Before her diagnosis, Irene worked as a senior social work manager. Irene has also been involved in research for the National Institute of Health Research (NIHR) for over 15 years.
Irene believes that the involvement of patients and carers in research is essential from their real-life experiences of dealing with a condition.
