Published ahead of the European Respiratory Society (ERS) Congress 2026, which takes place in Barcelona, Spain, from 5 to 9 September, the letter responds to this year’s congress theme, “United for better breathing: partnership between patients, clinicians and researchers“.
The letter was developed by members of the ELF Patient Advisory Committee and ELF’s 2026 Congress Working Group. It reflects on what the Congress theme means in practice, welcomes progress in patient-professional partnership and recognises patients as essential partners in advancing lung health. The letter also explores how patient partnership can be further developed across research, education and care.
Patient participation at ERS Congress has been increasing over recent years. In 2015, ELF held the first networking day for patient organisations, bringing patient advocates to the congress to share learning and develop joint priorities. The event celebrated its 10th anniversary last year and has helped to cement the role of patient organisations as a key pillar within the respiratory community. In 2024, ELF launched the “Community Space” networking area for patient representatives and professionals, followed in 2025 by the introduction of patient-centred studio sessions in the ERS Congress programme.
In 2026, patient involvement in the congress is not limited to dedicated initiatives. It is the central theme of the entire event. In total, 90 sessions will include patient perspectives, including:
This represents almost a quarter of the congress programme and is the highest level to date.
The letter welcomes this progress:
“We commend the Congress theme for recognising that patients, carers and patient groups are experts in their own conditions and essential partners in advancing respiratory health…Evidence increasingly demonstrates that patient involvement improves the relevance, quality and impact of research and care.”
Dimitris Kontopidis, ELF Chair, said: “Patients and patient representatives have been part of the ERS Congress for many years, and that is something we should be proud of. In 2026, this continues to evolve, with patients and carers involved across a wider range of sessions than ever before, and with patient priorities increasingly reflected in the programme.”
The authors suggest that realising the ambition of the Congress theme will involve further action:
“[The Congress theme] must now translate into concrete, measurable commitments and sustained accountability to strengthen meaningful patient partnership in practice…tokenistic approaches risk undermining both the contribution of patient advocates and the integrity of collaboration.”
The authors highlight the importance of recognising patient advocates as experts in their own right. The letter cites research collaborations, guideline development and policy work as examples of where patient expertise can make a difference.
The letter acknowledges that patient involvement can still be difficult in practice. Different laws, ethical frameworks and interpretations of the role of patient advocates across countries can make collaboration more complicated and discourage engagement.
To help address these challenges, the authors encourage ERS to make patient partnership a standard part of all its activities and to measure and report the impact of patient involvement.
If your organisation is interested in joining the Patient Advisory Committee (PAC), you can find further information here or contact the team at info@europeanlung.org.
If you would like to join a Patient Advisory Group (PAG), you can find further information here or contact the team at patients@europeanlung.org.
