For the first time, a whole-day networking event for the ELF patient organisation network was held during the European Respiratory Society (ERS) International Congress in London. With 64 people, from 45 organisations, across 20 countries taking part, it created an exciting and diverse forum for the exchange of ideas and good practice.
Participants told us they welcomed the chance to connect with other organisations specialising in a wide range of lung conditions and, with posters on display about the work of patient organisations, individuals could identify complementary projects and potential partnerships.
Following a warm welcome from Dan Smyth, Chair of ELF, and Professor Jørgen Vestbo, ERS President, the programme for the day opened with a lively ‘Singing for lung health’ session from the British Lung Foundation, who came with 16 volunteers from their Royal Brompton and Maidenhead singing groups to both demonstrate and talk about the benefits, with everyone joining in.
Rosamund Snow, patient editor with the BMJ, gave an inspiring keynote speech about the pioneering work they do involving patients as reviewers, authors and co-producers, with useful tips on how to get involved.
ELF Council members and individuals involved in a range of projects gave updates on many aspects of ELF’s work, including the ELF advocacy working group, lung cancer patient priorities project, occupational health project, U-BIOPRED patient input platform and patient involvement in ERS Task Forces.
Group workshops explored social media, EU funding and the European Patient Ambassador Programme, with the closing discussion session of the day asking participants to share experiences of challenges faced in networking with each other and in collaborating with healthcare professionals. A summary of these discussions will be circulated and used as a basis to improve things where we can.
Thank you to everyone who participated, it made for a very successful day. We aim to hold another for next year’s congress in Milan, taking into account all the feedback we have received.
Please send any further ideas or suggestions for next year’s day to Jeanette Boyd.
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