The European Health Data Space (EHDS) is a significant step forward for healthcare across Europe, especially for digestive cancer patients. EHDS can greatly enhance early detection, improve treatment outcomes, and drive groundbreaking research by enabling secure, standardised, and patient-controlled health data sharing.

How EHDS Benefits Digestive Cancer Patients

Each year, more than 900,000 people in Europe receive a digestive cancer diagnosis. Timely access to quality healthcare can be challenging. EHDS directly addresses these issues by:

• Improving Cross-Border Care: Patients gain seamless, secure access to their medical records across Europe, ensuring continuity of care wherever they are.
• Empowering Patients: EHDS gives patients greater control over their health information, allowing secure and controlled data sharing with healthcare professionals and researchers.
• Accelerating Research: Researchers will have secure access to anonymised health data, facilitating advancements in early detection methods and innovative treatments for digestive cancers.

DiCE’s Advocacy for Patient-Centric Health Data Governance

Digestive Cancers Europe (DiCE) has actively shaped the conversation around EHDS to ensure it meets patients’ real-world needs. At our 2023 Masterclass in Barcelona, we emphasised patient data’s critical role in advancing cancer care. DiCE also co-signed an EU Health Coalition letter urging strong patient representation in EHDS governance structures. We remain committed to empowering patients to use their data effectively to spur healthcare innovations.

Key Considerations for EHDS Implementation

To ensure the EHDS truly benefits digestive cancer patients, the following areas must be prioritised:

• Interoperability and Ease of Access: Health data must be readily accessible and sharable between healthcare providers across Europe without barriers.
• Robust Privacy Protections: Patient trust depends heavily on stringent security measures that protect sensitive health information from misuse.
• Patient Engagement in Governance: Patients must be genuinely involved in EHDS decision-making processes to align developments with patient priorities and real-life healthcare needs.

Looking Ahead

The EHDS can significantly enhance healthcare for digestive cancer patients—but only if patients remain central to its design and implementation. DiCE is committed to advocating for policies and frameworks that ensure the EHDS serves patients’ best interests, transforming Europe’s digital health landscape to deliver better outcomes for all.

Author:

Ivan Ratkovic