Brussels, March 21, 2023 – Following its policy brief calling for a digital health framework that facilitates virtual and in-person care for respiratory diseases, fostering transparency and participation, the European Lung Health Group publishes its proposed recommendations for the European Parliament discussions on the regulation for a European Health Data Space (EHDS).

Digital solutions bring great opportunities for health, allowing patients to have a more informed impact on their care. The future of healthcare delivery, medicine and clinical research in Europe will greatly depend on how the EHDS is embedded into the healthcare system and patients’ lives, and on the value each stakeholder gives to health data.

The European Lung Health Group thus calls the EU co-legislators to go for a European health data framework that responds to the following patients and healthcare professionals’ expectations:

  • Strengthen digital health literacy on crucial health data issues such as consent, data collection and use and rights and obligations, by investing in digital health literacy programmes for both patients and healthcare professionals to guarantee the effective and sound use of the data within the future EHDS.
  • Allow for an opt-out mechanism whereby patients and citizens have the choice to control their own health data by providing appropriate and informed consent.
  • Reinforce the role of patients and healthcare professionals’ organisations in the EHDS governance by allowing them to be part of the EHDS board and the relevant data governance bodies in the context of the EHDS.
  • Define the purposes for the secondary use of data to explicitly bring benefits to patients and provide for better public health outcomes.

The full ELHG recommendations to the EHDS are available in the BreatheVision website.

The ELHG Policy Brief on the EHDS “Improving lung health through the future European Health Data Space” is available here.