EPF and CPME publish EHDS guides for patients and healthcare professionals
The European Patients’ Forum (EPF) and the Standing Committee of European Doctors (CPME) have published two leaflets explaining the European Health Data Space (EHDS): one for patients and one for healthcare professionals.
The EHDS sets a common framework for accessing and sharing electronic health data across borders, and for using health data for purposes such as research and public health. Its implementation will happen in phases, with key parts beginning to apply from March 2029. Clear information now can help people and health systems prepare for what is changing.
The new leaflets offer an accessible introduction to the EHDS. They help patients understand their rights and choices, and give healthcare professionals a starting point for understanding how the new arrangements may affect their work and conversations with patients.
EPF President Marco Greco said:
“The EHDS represents an important step forward for patients across Europe. However, its success will depend on substantial efforts to raise awareness and strengthen digital health literacy. Infrastructure alone will not be enough to ensure the success of the EHDS; patients need to be brought on board.”
“The objective should be to enable patients to make an informed choice by understanding both their rights and the potential benefits of health data use for research, public health planning and the development of future treatments.”
CPME President Dr Ole Johan Bakke added:
“We want to reach out to patients and healthcare professionals across Europe with practical guidance on what the new rules mean. These leaflets help make a complex regulation understandable and support informed conversations with patients.
“For healthcare professionals, it is vital to have the necessary tools to reduce administrative burden and assist a smooth implementation of the EHDS. The leaflets lay the foundation, and we call on national health authorities and governments to provide strong support, among others for upskilling and financing, throughout the process.”
The EHDS regulation was adopted in 2024, and will be implemented in phases from 2029. EPF and CPME contributed to the development of the regulation and will continue to support efforts to ensure its implementation responds to the needs of patients and healthcare professionals.