In 2022, EFA’s BREATHE Coalition project helped continuing strengthening the cooperation within the nine European level patient groups and respiratory societies that form the European Lung health Group (ELHG). Throughout the year, the group evolved and developed technical common positions to bring key issues for lung health to the top of the EU legislative agenda.

Providing EU legislators with lung health advice

Throughout the year, the ELHG worked towards delivering the Breathe Vision 2030 ambitions. As a result, the patients-doctors group worked in partnership and coordinated responses to various EU legislative and programmatic consultations.

  • EU Non-Communicable Diseases (NCD) Initiative, which foresees a strand for chronic respiratory disease and action grants within the EU4Health programme 2021-2027.
  • Digital health, where members of the ELHG published recommendations on the EU proposal for a European Health Data Space regulation and the consultation of the Join Action Towards a European Health Data Space (TEHDAS), on the secondary use of data.
  • Pharmaceutical legislation, where the ELHG worked on recommendations to the review of the EU regulations on orphan medicines and medicinal products for paediatric use.
  • Global health, where members of the ELHG informed the new EU Global Health Strategy consultation on the links between respiratory infections, One Health and climate change effects on health.
  • NGOs cross-border activities, where members of the ELHG participated in consultations on how to simplify, improve, upgrade the work of European level civil society organisations.

Speaking with one voice about the future health data and digital health for lung disease

In February the ELHG launched its policy brief on the expected proposal on a European Health Data Space Regulation (EHDS) highlighting the opportunities it could bring for patients with lung diseases and healthcare providers. The brief raised concrete demands to translate digital data in healthcare into a reality, and called on policy makers to adopt a EHDS that would facilitate virtual and in-person care for respiratory diseases; would increase access to quality care and information; will function with transparency and will foster participation and that enables effective research on respiratory disease.

The brief was launched during an event of the MEP Lung Health Group at the European Parliament hosted by S&D Portuguese MEPs Sara Cerdas and Manuel Pizarro. The event brought together 236 participants and featured a panel discussion with digital health experts from the European Commission, the European Health Telematics Association (EHTEL), the BioMed Alliance, Comunicare Solutions SA, as well as representatives of the ELHG, EFA and the European Respiratory Society (ERS).

European Lung Health Group facts in 2022

9 European level lung patient groups, medical society and a foundation

Group facilitated by EFA, ERS and ELF: 7  meetings and 2 thematic workshops

5 coordinated replies to EU consultations

3 ELHG policy briefs on EU legislation