Patients’ role in the future of the European Health Data Space

The MEP Lung Health Group held an event ‘Improving lung health through the future European Health Data Space’ on 8 February 2022. It marked the launch of the European Lung Health Group policy brief on the future European Health Data Space. Read a summary of the event and access the full recording. 

The MEP Lung Health Group event ‘Improving lung health through the future European Health Data Space’ took place on 8 February 2022. This event was hosted by MEP Sara Cerdas and MEP Manuel Pizarro. It provided a unique platform for stakeholder discussion.


Over 200 people attended the event. Speakers included digital health experts, policy makers, healthcare professionals and patient representatives. They discussed how the future European Health Data Space (EHDS) legislation could reflect expectations from the respiratory community. Expectations include the huge potential to improve prevention, diagnosis, management and quality of life of people living with lung diseases. They also discussed what digitalisation would mean for patients, how it would benefit the treatment process and outcomes, and how they would be engaged in the EHDS.

Several speakers, including Ornella Martinello (European Commission) and Professor Arzu Yorgancıoğlu (ERS Advocacy Council Chair), emphasised the importance of digital health to help patients be more independent and better manage their condition. Brice Van Eeckhout (DRAGON IMI Project) outlined how digital tools that are developed together with their users (in particular patients, carers and healthcare professionals) can help give control to patients. The use of digital tools would allow patients to better understand their condition, treatment needs and options.

ELF and its COVID-19 Patient Advisory Group provide patient input on digital health topics as part of the DRAGON IMI project.

The event also marked the launch of the European Lung Health Group (ELHG) policy brief on the future EHDS. This new policy brief adds to the Breathe Vision 2030 on the topic of digital health. The ELHG recommends 4 key areas for the future EHDS to focus on. These include:

  • facilitate virtual and in-person care for people with lung conditions;
  • increase access to quality care and information;
  • be clear about data use and encourage patients to participate; and
  • allow effective research on lung disease.

Further information

MEP Lung Health Group

The MEP Lung Health Group is an informal platform for policymakers, health professionals and patient representatives to identify the potential EU policy measures aimed at improving lung health. The group is run by the European Respiratory Society and European Lung Foundation. Find out more:

European Lung Health Group

The ELHG is an informal group of patient representatives and healthcare professionals. It has 179 member associations from across Europe. Its Breathe Vision 2030 outlines the changes that lung patients want to see across awareness, prevention, care, research and the impact of COVID-19. Find out more:

European Health Data Space

Read the full policy brief on the future European Health Data Space:

Watch the full recording of the event: