Development of Food Allergy Data Dictionary: Toward a Food Allergy Data Commons

Abstract

Food allergy (FA) data lacks a common base of terminology and hinders data exchange among institutions. To examine the current FA concept coverage by clinical terminologies and to develop and evaluate a Food Allergy Data Dictionary (FADD). Allergy/immunology templates and patient intake forms from 4 academic medical centers with expertise in FA were systematically reviewed, and in-depth discussions with a panel of FA experts were conducted to identify important FA clinical concepts and data elements. The candidate ontology was iteratively refined through a series of virtual meetings. The concepts were mapped to existing clinical terminologies manually with the ATHENA vocabulary browser. Finally, the revised dictionary document was vetted with experts across 22 academic FA centers and 3 industry partners. A consensus version 1.0 FADD was finalized in November 2020. The FADD v1.0 contained 936 discrete FA concepts that were grouped into 14 categories. The categories included both FA-specific concepts, such as foods triggering reactions, and general health care categories, such as medications. Although many FA concepts are included in existing clinical terminologies, some critical concepts are missing. The FADD provides a pragmatic tool that can enable improved structured coding of FA data for both research and clinical uses, as well as lay the foundation for the development of standardized FA structured data entry forms.