EHDS Implementation: Towards Citizen Information Points
EPF calls for patient-centred Citizen Information Points under the European Health Data Space
EPF has published its feedback on the TEHDAS2 draft guideline for Citizen Information Points (CIPs) under the European Health Data Space (EHDS). The statement welcomes the proposal as an important step towards helping people understand how their health data is used, while highlighting opportunities to strengthen patient involvement, transparency and digital health literacy.
Citizen Information Points are intended to provide clear and accessible information about the secondary use of health data, patients' rights, and the safeguards in place under the EHDS. EPF supports this objective but stresses that these information services must be designed with patients, not only for them.
In its statement, EPF calls for:
- information to be provided in clear, accessible language and co-developed with patient organisations;
- stronger guidance on communicating the EHDS opt-out mechanism, enabling people to make informed decisions about the use of their health data;
- clear processes for informing patients about clinically significant findings resulting from health data use, with appropriate support from healthcare professionals;
- greater recognition of Citizen Information Points as tools to improve digital health literacy, build public trust and raise awareness about the benefits of responsible health data sharing; and
- meaningful patient involvement in the governance and implementation of the EHDS, ensuring patient organisations play an active role beyond communication and consultation.
EPF also encourages Health Data Access Bodies to build on existing patient-led initiatives and educational resources, such as the Data Saves Lives initiative, and to work closely with patient organisations to ensure information reaches diverse communities across Europe.