Establishing data elements and exchange standards to support long COVID healthcare and research

The Multiple Chronic Conditions (MCCs) Electronic Care (e-Care) Plan project aims to establish care planning data standards for individuals living with MCCs. This article reports on the portion of the project focused on long COVID and presents the process of identifying and modeling data elements using the HL7 Fast Healthcare Interoperability Resources (FHIR) standard.

Critical data elements for managing long COVID were defined through a consensus-driven approach involving a Technical Expert Panel (TEP). This involved 2 stages: identifying data concepts and establishing electronic exchange standards.

The TEP-identified and -approved long COVID data elements were mapped to the HL7 US Core FHIR profiles for syntactic representation, and value sets from standard code systems were developed for semantic representation of the long COVID concepts.

Establishing common long COVID data standards through this process, and representing them with the HL7 FHIR standard, facilitates interoperable data collection, benefiting care delivery and patient-centered outcomes research (PCOR) for long COVID. These standards may support initiatives including clinical and pragmatic trials, quality improvement, epidemiologic research, and clinical and social interventions.By building standards-based data collection, this effort accelerates the development of evidence to better understand and deliver effective long COVID interventions and patient and caregiver priorities within the context of MCCs and to advance the delivery of coordinated, person-centered care.

The open, collaborative, and consensus-based approach used in this project will enable the sharing of long COVID-related health concerns, interventions, and outcomes for patient-centered care coordination across diverse clinical settings and will facilitate the use of real-world data for long COVID research.