International corneal and ocular surface disease dataset for electronic health records

To provide a comprehensive and internationally standardised Cornea and Ocular Surface Disease (C&OSD) dataset for use in electronic health records (EHRs).

This was an international consensus study conducted through roundtable discussions involving 35 international experts specialising in the field of C&OSD. The Royal College of Ophthalmologists dataset guidelines were used to articulate initial C&OSD data elements template by curating data elements from validated published datasets obtained through scientific literature searches and accessing existing international patient clinical and reported outcome recording instruments and registries. These included data elements recommended by the Dry Eye Workshop II, International Meibomian Gland Dysfunction Workshop, Ocular Surface Disease Activity and Damage Indices, the Cicatrising Conjunctivitis Assessment Tool, Limbal Stem Cell Deficiency Clinical and Confocal Grading, Chronic Ocular Manifestations in Patients with Stevens-Johnson Syndrome, and the UK Transplant Registry. Data elements pooled into an independent operational data model.

A comprehensive generic dataset (common to all ophthalmology datasets) and C&OSD-specific dataset were developed. Within the C&OSD dataset, several gateway disease datasets, such as atopic or allergic eye diseases, meibomian gland dysfunction, cicatrising conjunctivitis, chemical injury, dry eye, limbal stem cell deficiency, microbial or infectious keratitis, corneal erosion syndrome, and keratoconus, were established to streamline data entry for clinical audit and research purposes.

A comprehensive C&OSD dataset is provided which can be used by both generalist and specialist ophthalmologists. Adoption of the full dataset by EHR providers will lead to better interoperability and patient care and facilitate international research collaboration.