How access to health data can empower citizens and patients

Health data are not merely a pile of laboratory or imaging results, diagnoses, prescriptions and treatments, but they tell the story of our health. However, this information is often fragmented across different hospitals, healthcare professionals and digital systems. For patients and citizens, having access to this information is not just a matter of ease, but a cornerstone of informed decision-making and control over personal health data. Across Europe, this is becoming particularly important with the launch of the European Health Data Space (EHDS), which aims to improve citizens’ access to electronic health records and facilitate information exchange between providers within and across countries.

Greater access to health data can support continuity of care

For many people, healthcare involves more than one healthcare professional or facility, especially for those living with a chronic disease or other conditions that require long-term follow-up. Often, patients must connect different pieces of health information to get an overview of their health journey. However, when health information is securely stored in an electronic health record and securely available across different healthcare settings, it helps healthcare professionals coordinate care and helps patients participate more actively in decisions about their care, leading to more effective communication, better health outcomes, and an improved healthcare experience. The benefits become even clearer when someone needs healthcare away from home or in another European country.

From vision to practice: myHealth@myHands

By supporting secure, seamless sharing of health data across European countries, myHealth@myHands aims to make healthcare easier to navigate, more connected, and responsive to people’s needs. It also helps electronic health records work better across different systems and borders, so people gain meaningful access to their health information and understand, manage and use it when they need to.

MyHealth@MyHands places patients and citizens at the centre of their activities by recognising them as active contributors to how the project is developed and how its results are used. Through the Patient Liaison role established in the project, patient organisations bring forward real needs, perspectives and experiences of patients and citizens to inform the consortium’s work. ELLOK is happy to lead the Patient Liaison role alongside Rare Diseases Greece, the Mallow Flower Foundation and Data for Patients.

“Meaningful access to health data means being able to understand your information, use it when you need it, and feel that you have a real voice and greater control throughout your health journey.” (Katerina Nikitara, Patient Representative)

Ultimately, meaningful access to health data can empower patients and citizens by giving them the possibility to understand their health information, use it when it matters, and take a more active role in decisions about their care. When access is secure, understandable and inclusive, health data can support greater confidence, continuity of care and stronger participation in healthcare.

Author: Katerina Nikitara