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Related Experiment Video

Updated: Sep 9, 2025

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Towards a FHIR Specification for Research in Ophthalmology: Designing the EyeMatics Core Data Set for Multi-Centric

Johannes Benedict Oehm1, Lars Fuhrmann2, Katja Hoffmann3

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Summary

Developing specific FHIR profiles for ophthalmology data integration is feasible but requires careful consideration of clinical complexity and terminology. This approach aids understanding treatment effects for retinal diseases.

Keywords:
Core Data SetFHIRMIIeye careinteroperability

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Area of Science:

  • Medical Informatics
  • Ophthalmology
  • Health Data Standards

Background:

  • EyeMatics is a German Medical Informatics Initiative (MII) use case focused on retinal diseases treated with intravitreal injections.
  • The goal is to enhance understanding of treatment effects by integrating medical data from multiple hospital sites.
  • Integration relies on local Fast Healthcare Interoperability Resources (FHIR) repositories utilizing a common set of FHIR profiles.

Purpose of the Study:

  • To develop project-specific FHIR profiles for integrating ophthalmology data within the EyeMatics use case.
  • To address the representation of complex ophthalmic concepts and establish patterns for data modelling in FHIR.
  • To facilitate the analysis of treatment effects for common retinal diseases.

Main Methods:

  • Formation of a medical and technical expert panel to define a project-specific core dataset.
  • Compilation of the dataset from existing data models, synthetic patient encounters, UI forms, and MII profiles.
  • Development of custom FHIR profiles and code systems for ophthalmic concepts and laterality.

Main Results:

  • Successfully created FHIR profiles to represent key ophthalmological concepts, including visual acuity and eye laterality.
  • Established a common pattern for representing eye laterality within FHIR Observation resources.
  • The developed FHIR profiles are publicly available via a GitHub repository.

Conclusions:

  • Project-specific FHIR profile development is achievable quickly but risks fragmentation without coordination.
  • Clinical complexity in ophthalmology necessitates deviations from standard FHIR patterns and highlights terminology gaps.
  • Future modules should integrate these profiles with international standards to avoid implementation silos.