EPF Launches New Toolkit to Help Understand the European Health Data Space (EHDS)

Part of the Data Saves Lives Initiative 

The European Patients’ Forum (EPF) has launched a new toolkit to help people understand the European Health Data Space (EHDS). This is part of the Data Saves Lives initiative. 

What is the European Health Data Space (EHDS)? 

The EHDS is a major EU Regulation that aims to give every EU citizen access to their health data – wherever they are in the EU, and to ensure that the data can move with them, no matter where in the EU they go. 

A recent webinar hosted by EPF explained the EHDS journey. Our ambassadors took part in the training, and here are their key takeaways.

What Will Change? 

• All EU countries will use electronic health records (EHR). 
• Patients can access their medical data anytime, anywhere – digitally and free of charge. 
• Hospitals, GPs, pharmacies, and labs will be better connected. 
• Your health information (like medicines, allergies, test results) can be securely shared with doctors – even in another EU country, if you agree. 

Example: If you fall ill on holiday in Spain, a doctor there can access your records (with your permission) to give you safe and effective care. 

Two Ways Your Data Can Be Used 

1. Primary Use – For Your Own Care

Examples: 

• Your GP prescribes medicine.
• You get an X-ray.
• You are admitted to the hospital.

This data can be shared with other healthcare providers with your permission. You stay in control by: 

• Seeing who accessed your data.
• Correcting any mistakes.
• Hiding certain information if you wish.

2. Secondary Use – For Research, Policy, Innovation

Examples: 

• Research into rare diseases.
• Improving hospital care or medicines.
• Health policy planning.

Your data is anonymised or pseudonymised (your name is removed). You can say no to this kind of use.
Note: In emergencies like pandemics, exceptions may apply. 

Your Rights & Privacy 

• You decide who can see your data. 
• You can opt out of secondary use. 
• All data use follows strict GDPR privacy rules. 
• In emergencies, your data can be accessed to save lives. 

Who Oversees the EHDS? 

Each EU country will have two main bodies: 

1. Digital Health Authorities (DHA) – for primary care 
2. Ensure your data is used safely. 
3. Handle complaints. 
4. Health Data Access Bodies (HDAB) – for secondary use 
5. Approve access for trusted researchers. 
6. Work with patient groups and publish reports. 

What Can Patient Organisations Do? 

• Explain EHDS rights and benefits to members. 
• Help people with low digital or health literacy. 
• Offer support via helpdesks or email. 
• Share patient data (e.g. from registries). 
• Talk to national authorities to represent patients. 

Toolkit Suggestions: 

• Create brochures (and translate them if needed). 
• Collect patient stories about data sharing. 
• Run surveys to understand patient experiences. 

Key Dates 

Why Is EHDS Important? 

For Patients: 

• No more repeated tests. 
• Always have your medical history. 
• Better care, even abroad. 
• More control over your data. 

For Doctors: 

• Faster access to key information. 
• Less paperwork. 
• More time with patients. 

For Researchers & Policymakers: 

• Better data. 
• Faster innovation. 
• Smarter health policies. 

Final Thoughts 

The EHDS is a big step forward, but there are challenges: 

• Not all countries are equally digital. 

• People need clear information about their rights. 

• Patients must be involved in shaping the system. 

The toolkit encourages patient organisations to stay engaged and help build a system that is safe, fair, and easy to understand. 

Why It Matters for the FH Europe Foundation Community 

For the FH Europe Foundation Community – which includes people living with familial hypercholesterolaemia (FH) and other inherited lipid conditions – the EHDS offers a vital opportunity. It can improve early diagnosis, enable better-coordinated care across borders, and support research into rare and underdiagnosed conditions. By contributing to and benefiting from high-quality, secure data sharing, the community can help shape a future where personalised, timely, and effective care is available to all, no matter where they live in the EU. 

🔗 Want to learn more? Visit the Data Saves Lives website.  

📺 Watch this clip – What is Data Saves Lives

Special thanks to our ambassador, Renate Kaal-Poppelars, for sharing her insights and contributing to this piece.