Dan Smyth: Patient involvement in the European Respiratory Society Congress 2015-16

dan-smythThe European Lung Foundation (ELF) brings together patients and the public with respiratory professionals to positively influence lung health. ELF works with a network of patient organisations and individuals (via the European Patient Ambassador Programme) who take part in the European Respiratory Society (ERS) International Congress.

The aim of having patient organisations at the congress is to:

• present the patient perspective in scientific and educational sessions
• promote the role of patient organisations
• strengthen the respiratory patient organisation community
• widen the participation of patients and patient organisations in healthcare

Patient organisations
In 2015 42 patient organisations (amounting to more than 70 representatives) took part in the congress. ELF provided free registration to patient organisations that were part of the World Village—a networking area for professional societies and patient organisations from across the world, which also featured an auditorium for short presentations on key activities.

ELF coordinated a programme of meetings and learning opportunities for patient organisations, on topics ranging from patient organisations in EU projects to the James Lind Alliance approach to shared priority setting.

Patient participants
Fourteen patient speakers and nine demonstrators took part in scientific symposia and educational workshops, and found the experience uplifting: “[It] made me believe that I could help the other patients to be more understood by doctors or the community in general.” They found that “everybody was interested in me, what I had to say, and my experience.” There was also a patient-professional forum focused on pulmonary rehabilitation, where two people with chronic obstructive pulmonary disease (COPD) discussed their experiences alongside their healthcare professionals (HCP).

To ensure their comfort and confidence, patient speakers and demonstrators were partnered with a HCP guide. Nine HCPs volunteered for this role: to meet and greet the patient, answer any questions, help upload slides, accompany them to sessions, collect payment, etc. This initiative proved a great success, with the patients happy with the presence of a patient guide and the chair of the session very pleased with the presence of the patients. The patients felt that the guide “helped me to relax and to enjoy the meeting, the speech, and the entire opportunity”; while the guide felt that the experience “taught me a lot about the needs of the patient and their experience of their disease. I can understand their difficulties in normal life.”

Patient and professional initiatives
At the congress, ELF also brings patients and professionals together to debate key topics. In 2015 31 patients, patient organisations, HCPs, researchers, and industry representatives participated in a consensus workshop to prioritise asthma research topics. The success of the multi-stakeholder initiative was clear in the feedback: “I think that we should keep working hard on this collaboration, not only for patients with bronchiectasis but for patients with any respiratory disease within the ERS.”

Looking forward
ELF builds on the achievements and lessons of each congress to ensure impactful and enjoyable patient and patient organisation involvement across ERS and ELF work. As I write this blog, I’m looking forward to the 2016 ERS Congress in London in September, where ELF will be working with UK patient organisations on a large scale public awareness initiative and holding their first patient organisation networking day. Also new for this year are travel grants ELF has awarded to researchers who explored patients’ priorities and involved patients as co-producers. The 2016 congress will also feature two mainstream symposia co-developed and delivered by patient organisations and HCPs.

Full details of the 2016 ELF patient organisation programme are available on the ERS Congress website. ELF continues to work for further integration, working towards having patients and patient organisations sitting on the ERS’s scientific, education, and advocacy committees.

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.

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Analysis: “Nothing about us without us”—patient partnership in medical conferences
Blog: The evidence informed patient
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