This year the European Lung Foundation (ELF) decided to do things a bit differently for the patient organisations attending the European Respiratory Society (ERS) International Congress in London in early September. We have invited patient organisations to the congress for several years, and patient representatives have been involved in many activities during the congress, such as contributing as speakers to give a patient perspective in scientific sessions and attending task forces and meetings relating to EU projects.
This year we wanted to go further and hold a whole day exclusively for patient organisations to facilitate learning and networking—a first for us. We invited all patient organisations in our European network and asked them what sort of workshops they would like to see on the programme for their day. Some organisations came back with very specific ideas, around social media training and access to EU funding, and both of those requests were included, as was a session on the European Patient Ambassador Programme (EPAP), our e-learning tool for patients interested in patient involvement.
On the day 65 individuals from 45 patient organisations based in 20 different countries were able to attend, and we were pleased that there were familiar faces, as well as a number of members from patient organisations that had only recently joined our network.
The day started with a singing for lung health session led by the British Lung Foundation. This was a great way to break the ice and start the day in a fun and informative way.
We invited Rosamund Snow, patient editor at The BMJ, to give the keynote speech on patient involvement in healthcare publishing at The BMJ, which was received with enthusiasm. After this there were presentations from patient representatives, who hold different positions within ELF, reporting on the current state of their involvement.
Most organisations had brought posters that were displayed in the room, and which facilitated informal introductions and networking. The afternoon was spent in two groups—one sharing the challenges patient organisations face in networking with other organisations across Europe, and the other debating the challenges of collaborating with healthcare professionals. This generated some good discussions, and many actionable points for solving those challenges were made, which the ELF will take on board and which will help us try and facilitate improvements.
The feedback we have received from the people attending has been very positive and many relayed how excited they were to be able to be part of such a big, international scientific congress. Taking their comments on board, we are now getting on with the task of organising an even better patient organisation networking day at next year’s ERS International Congress in Milan.
Dan Smyth is the chair of the European Lung Foundation (ELF) and the honorary secretary of the Irish Sleep Apnoea Trust (ISAT). Dan is the first ever patient chair of the ELF and is an executive committee member of the European Respiratory Society (ERS), its professional partner organisation. ELF aims to ensure that the work of the ERS and respiratory science in general is communicated to the public and patients. Its second goal is to fully involve patients in the life and work of the ERS, its research, guidelines, and congress.
Competing interests: I have read and understood BMJ policy on declaration of interests and declare the following interests: None.