Real-world data landscape for glaucoma in Europe: a questionnaire-based analysis of resources among European Glaucoma Society members

Background/aims To investigate the landscape to support Europe-wide collaborative real-world data (RWD) collection, exploring whether required resources are available to glaucoma clinicians. Methods This cross-sectional study employed a two-phase method, including two consecutive electronic questionnaires. For phase I, a survey was distributed to all European Glaucoma Society members inquiring about use of electronic medical records (EMRs). For phase II, EMR users who expressed their interest in contributing to a European RWD were surveyed regarding EMR data characteristics and technical resources. Results Phase I garnered responses from 201 glaucoma specialists, with 68% reporting use of an EMR. Among them, 47% and 65% reported over 90% of coding rates for diagnoses and medications, respectively. Despite the EMR making available report copies for perimetry (27%) and optical coherence tomography (OCT) (37%), automatic data extraction capabilities were limited to only 10% and 8%. 47 participants responded to phase II. Their practices saw an average of 415 glaucoma patients per month. Date of intraocular pressure (IOP) measurement was the most commonly available structured data (67%), followed by visual acuity (59%) and IOP (56%). 46% had access to central computing systems, with 41% reporting past experience in federated learning initiatives and 73% willing contribution. 34% reported involvement in the development of artificial intelligence algorithms. Conclusion This study highlights a noteworthy EMR use among European glaucoma specialists, with structured data for metrics like IOP, but identifies gaps in data extraction capabilities. Major challenges include EMR heterogeneity, lack of standardised outcomes, healthcare system differences and cost. A combined approach using structured coding, digitised EMR data and semistructured OCT/perimetry data is recommended.