To have a more patient centric health data space in Europe, EFA together with the European Patients Forum (EPF), has presented decision-makers in the European Parliament with legislative amendments to improve the European Commission proposal and make it work for allergy, asthma and chronic obstructive pulmonary disease (COPD).
The initial European Health Data Space (EHDS) proposal was published in May 2022 by the European Commission as part of building a European Health Union. EFA welcomed the initiative, particularly the framework on the primary use of data and the power it will give patients to own and manage their health data and therefore their disease. In response, we highlighted the main points where the role of patients as owners of their data needs to be further strengthened, namely on the re-use of individuals data for other purposes.
The EHDS file is currently being discussed within the European Parliament, by both the Committee on the Environment, Public Health and Food Safety (ENVI), and the Committee on Civil Liberties, Justice and Home Affairs (LIBE). The rapporteurs from each committee have just been appointed, with a draft parliament report envisioned for publication in February 2023.
Patients’ recommendations to the European Parliament discussions on the EHDS
In a joint work with EFA, EPF has adopted amendments to reinforce the patients’ rights in the framework, highlighting:
- The need for strengthening the patients’ right to access to information in the case of secondary use of their data.
- The need for an effective access to justice provision to ensure proper enforcement of fundamental rights of all groups, and especially patients, regarding their data;
- The need for further strengthening the role of patient organisations’ within the governance structures of the EHDS;
- The need for further coordination with already existing data protection authorities at both EU and national level, and alignment between the already existing data protection frameworks;
EFA and EPF have shared these proposals with the relevant Members of the European Parliament working on the file. We encouraging them to integrate these patient’ driven amendments to the future EHDS framework.
You may find the amendments here.