February 8 2022 – The European Lung Health Group launched its policy briefing on “Improving lung health through the future European Health Data Space (EDHS)”. The brief highlights the opportunities the EDHS brings for patients with lung disease and healthcare providers, with concrete demands to make these benefits a reality.

The European Health Data Space (EHDS) sets out to establish a common framework across EU Member States for the management of health data, as part of the Commission’s priorities for a European Health Union and a Europe Fit for a Digital Age.

The transformation of healthcare into digital settings presents exciting opportunities to advance lung health research, and allows patients to have a more informed say in their health. However, as health data contains highly sensitive information about patients, it is vital that any framework or regulation allows patients to remain in full control of their data.

The European Lung Health Group calls for a European Health Data Space responds to the following patients and healthcare professionals’ expectations:

  • A European Health Data Space to facilitate virtual and in-person care for respiratory disease
  • A European Health Data Space to increase access to quality care and information
  • A European Health Data Space that functions with transparency and fosters participation
  • Health data space to enable effective research on respiratory disease


The European Lung Health Group is an informal group of European level non-profit organisations representing patients and healthcare professionals from 179 member associations across 34 countries. Its mission is to empower patients living with lung disease, improve quality of life, and optimise multidisciplinary care, early diagnosis and research.