2022 was a pivotal year for the steep digitalisation of healthcare, as the European Commission launched a proposal for a Regulation on a European Health Data Space (EHDS) to provide with a framework for individuals to access and control their electronic personal data across Member States (primary use of data), and to enable EU-wide health data research (secondary use of data).

EFA highlighted the need for patients to be in control of their health data for privacy (primary) but also to experience the benefits of sharing data, such as allowing broader research that will improve their own health outcomes (secondary). We called on the European Commission to expand the patient’s role in the health data infrastructure, and to better equip patients against any breach or unethical use of their data, by introducing an access to justice provision within the EHDS framework.

With the proposal for a regulation at the European Parliament, EFA has been a key player alongside the European Patients’ Forum (EPF). As Members of EPF Digital Health Group, EFA engaged with 24 Members of the European Parliament belonging in four different EP committees.

In 2022, EFA also brought the chronic disease patient expertise to the Joint Action Towards a Health Data Space (TEHDAS) as members of the Stakeholder Forum, consultations and workshops.

In 2022, EFA signed a partnership with the Healthcare and Information Management System Society (HIMSS) as a civil society organisation, one of the few representing patients.

'Imagine a child living in Spain gets sick on a school trip in France. Thanks to the European Health Data Space, a local doctor will be able to see the relevant medical history in French and be aware of any allergies, existing medication or other important factors. This way the doctor will be able to carry out the best possible treatment.'
Commissioner Kyriakides, June 23rd, 2022, EPF Congress.

29. EHDS

At the EPF Congress on digital transformation, Isabel Proaño discussed the digital health governance.