Patient involvement in the ERS International Congress 2018

ELF coordinates patient involvement in the ERS International Congress, which is one of the leading international medical conferences to include patients in its programme. This year was no different, with patients taking part in scientific and educational sessions, participating in research and guideline meetings and being a key part of the World Village.

Patient organisations participating in Congress

Each year, patient organisations play an active role in the ERS International Congress through several activities – participating in the ELF Patient Organisation Networking Day, joining us on the ELF stand to talk to delegates about their work, giving presentations in the World Village auditorium, as well as attending and contributing to meetings.

This year, 56 patient organisations, bringing a total of 88 delegates, attended the Congress. Organisations represented a wide range of conditions and were from across Europe – as well as Australia, Chile and the USA.   

Patients within scientific and educational sessions

Patients were involved in the main Congress scientific and educational programme as speakers, demonstrators, chairs and, for the first time, as panellists. This was an opportunity for healthcare professionals to learn from the lived experiences of people with chronic cough, asthma, idiopathic pulmonary fibrosis, sleep apnoea, cystic fibrosis, tuberculosis, and occupational lung conditions.

One of this year’s patient speakers said of their experience: “It’s great that ERS gives patients the opportunity to share their views and experiences. With joint forces, all will benefit. Personally, as a patient, it was a great experience, gathering new knowledge, through the many presentations and encounters with others.”

Patients attending research project and guideline meetings

With so much expertise gathered in one place, the Congress is also a good opportunity for meetings about ongoing research projects and new guidelines. This year, 23 patient representatives participated in a total of 17 meetings with healthcare professionals and scientists, covering topics including pregnancy and airway conditions, sarcoidosis and asthma diagnosis in adults. Our bronchiectasis and sarcoidosis patient advisory groups also met at Congress.