The European Lung Foundation (ELF) provides the patient voice in the activities of the European Respiratory Society (ERS). ERS is a medical society that produces guidelines, funds and publishes research, runs courses and holds conferences for health professionals working in lung health and disease. People with lung conditions can get involved via ELF to ensure the patients’ voice is heard in ERS activities.
If you are interested in any of these opportunities, please contact email@example.com.
European Patient Ambassador Programme (EPAP)
Would you like to use your experiences to improve healthcare?
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. The learning modules cover:
- Finding information
- Health policy
- Media activities
- Participating in healthcare conferences
Visit the EPAP website for more information and to register.
Patient Advisory Groups
We have formed a number of Patient Advisory Groups (PAGs) made up of people living with a range of respiratory conditions. Members share their perspectives and get involved in projects to help improve treatment and healthcare. Most of the groups are open to new members from European countries.
Our PAGs are:
- Children's Interstitial Lung Disease (ChILD)
- Chronic Cough
- Chronic Obstructive Pulmonary Disease (COPD)
- Lung cancer
- Lymphangioleiomyomatosis (LAM)
- Primary ciliary dyskinesia
- Sleep apnoea
WE WOULD LIKE TO HEAR FROM YOU IF YOU:
- Are over 18 and have experience of living with one of the conditions listed above..
- Are resident in a European country.
- Can communicate in English (spoken and written).
- 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.
As a member of a PAG, you will be asked to share your perspectives on living with your condition including how it impacts on 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.
Any costs for getting involved in the PAG, such as telephone calls, travel and accommodation costs will be covered in line with our expenses policy. Please note that this is a voluntary role, and we are unable to pay for your time.
HOW TO GET INVOLVED
If you are interested in getting involved and would like to find out more, please email firstname.lastname@example.org
ERS Task Forces
Put patients’ views at the heart of healthcare by helping develop new guidelines and statements on important lung health topics.
You can input into all stages of ERS guidelines by:
- Helping identify which topics should be addressed
- Answering surveys to understand patient experiences
- Reviewing ERS documents and helping make versions for patients and the public
To find out more about guidelines we are involved in go to Task forces.
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 by:
- Presenting patient experiences during scientific talks
- Taking part in discussion groups with professionals to tell them what matters
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. Opportunities for involvement will be posted on the EPAP LinkedIn group.
Help professionals understand the realities of living with your condition.
The ERS runs face-to-face and online courses for health professionals on lots of different topics. You could:
- Take part in courses to teach professionals about living with a condition
- Present and answer questions about your experiences
- Provide case studies for courses
- Help with demonstrations so professionals can improve their practical skills
If you are interested, email email@example.com to find out if there are any upcoming opportunities.
ELF patient priorities project
Help design patient-led information and guidance for healthcare professionals and patients.
Patient Priorities is an initiative in which patients advise on the development of guidance to address the needs of patients and inform healthcare professionals on areas where European level patient-centred information is lacking.
The Patient Priorities projects are:
- Lung cancer
- Lymphangioleiomyomatosis (LAM)
- Children with interstitial lung disease (ChILD)