Involving patients and care givers is at the core of the work we do. Whether you want to be involved in research, improving healthcare practices or you want to help us raise money for ELF, the information you need can be found here.
ELF Patient advisory groups (PAGs) help others living with lung diseases, often by advising doctors and researchers or producing factsheets and information. ELF runs PAGs for lots of different lung diseases and each one is slightly different. In general PAGs are made up of individuals with a certain lung condition, as well as representatives of patient organistions working in that area.
As a member of a PAG, you will be asked to share your perspectives on living with your condition. This might include how it impacts your daily life, your thoughts on treatment and aspects of your condition that may not have been researched. You also have the chance to highlight any information gaps or priorities that you think are important to patients and caregivers.
As a patient or carer you have a unique experience of how this condition impacts on daily life.
The European Patient Ambassador Programme (EPAP) introduces you to some of the skills and knowledge you may need to represent yourself or others successfully. EPAP is a free online learning resource developed to help patients and carers gain the knowledge and confidence to get involved in lots of different areas of patient involvement.
Courses are available in multiple languages.
Learn more about EPAP and how to registerDo you want to ensure patients’ views are at the heart of future healthcare? You can get involved in developing new guidelines and statements on important lung health topics. Clinical guidelines are best practice document on how to diagnose, manage and treat a condition. We produce lay versions of European Respiratory Society guidelines which you can find here.
You can input into all stages of ERS guidelines by:
It is important to us that we represent the views of different people living with lung conditions. To collect the views of as many people as possible, we often send out surveys in multiple languages.
Find out about our current surveys and how you can take partSharing experiences is so valuable. We can learn from each other and know that we are not alone in our situation. We have a collection of both written and video stories from people with lung conditions and care givers. If you are interested in sharing your story, please contact us and we will support you to produce your text or video.
Help health professionals improve their awareness of the patient experience by speaking at the world’s largest lung conference.
Having input from patients and carers at healthcare conferences can change the way professionals think about the impact of lung conditions on daily living. Each year we identify sessions that patients could be involved in by:
If you are interested in speaking at the ERS Congress please register for the European Patient Ambassador Programme (EPAP) and join our community of patient ambassadors.
With your support, ELF can reduce healthcare inequalities, improve education about lung health and increase patient involvement in research and policy making.
COVID-19 has put lung health at the forefront of people’s minds and demand on our services is increasing. Now, more than ever, it is important for ELF to be able to provide accurate, trustworthy and understandable support and information to everyone across Europe in their own language.
