Statement from Glaucoma Patients Across Europe on DICOM Adoption

As representatives of thousands of glaucoma patients across Europe and the UK, we strongly support urgent progress to improve interoperability across ophthalmology services—particularly with respect to imaging data.

For people living with glaucoma and other chronic eye conditions, access to connected, complete, and usable data is essential for safe, timely, and coordinated care. Today, too many patients experience fragmented services where vital diagnostic results — such as visual field tests and OCT scans — do not easily follow them between clinics, care providers, or across national borders. This leads to repeated testing, unnecessary appointments, delays in decision-making, and added stress for patients.

From a patient perspective, improved interoperability means smoother care pathways, greater efficiency, and confidence that clinical decisions are based on a complete longitudinal record.

Glaucoma is a lifelong, progressive disease requiring repeated high-precision imaging and continuous monitoring. Fragmented or proprietary imaging formats undermine longitudinal comparison, continuity of care, and ultimately patient safety—especially for those who seek second opinions or care across regions or countries.

We therefore call for the mandatory adoption of the Digital Imaging and Communications in Medicine (DICOM) standard by manufacturers of advanced medical imaging and scientific equipment used in glaucoma care and research. Full DICOM compliance provides the technical foundation necessary to ensure that imaging data and associated metadata remain interoperable, portable, and clinically usable throughout a patient’s lifetime, regardless of care provider or technology vendor.

Mandatory DICOM adoption is fully aligned with existing European legal and policy frameworks, including:

• Directive 2011/24/EU on patients’ rights in cross-border healthcare, which emphasises continuity, quality, and safety of care;
• The Charter of Fundamental Rights of the European Union, including principles of equality, non-discrimination, and access to healthcare;
• The General Data Protection Regulation (GDPR), which safeguards the protection and proper use of personal health data;
• The European Health Data Space (EHDS), which strengthens patients’ rights to access, portability, and effective use of electronic health data, and promotes interoperability for both care and research.

These frameworks presuppose the availability of standardised, interoperable health data. Interoperable imaging opens long-term advantages such as service improvement, enables responsible innovation—including AI-assisted diagnostic tools—and facilitates large-scale, cross-border research collaborations. This, in turn, leads to earlier diagnosis, better understanding of disease progression, improved treatment outcomes, and identification of undiagnosed patients. Ultimately, it ensures that all patients benefit equitably from scientific and technological advances.

For glaucoma patients, mandatory DICOM adoption is not merely a technical issue—it is a matter of patient safety, quality of care, and fundamental rights. It is a necessary and proportionate measure to ensure equitable access to high-quality healthcare and effective use of health data across Europe and the UK.

We call for clear national and European leadership, strong collaboration with clinicians and industry, and a firm commitment to open, secure, and fully interoperable data systems through the mandatory implementation of DICOM standards. By addressing current barriers to interoperability, health systems can significantly improve patient experience and deliver more coordinated, person-centred eye care.

We look forward to working constructively with policymakers, clinicians, industry partners, and other stakeholders to advance progress on this critical issue.