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

Objective 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.Materials and Methods 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.Results 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.Discussion 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.Discussion 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.Conclusion 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. Long COVID is a condition where people experience lingering symptoms after recovering from COVID-19. These symptoms can affect various parts of the body and may lead to chronic health issues like heart disease and diabetes, with certain groups suffering more due to societal inequalities.A comprehensive approach, consolidating all their health data, is crucial to providing the best care for those with long COVID and chronic conditions. The Multiple Chronic Conditions (MCCs) Electronic Care (e-Care) Plan project focuses on creating tools to simplify access to and use of these data.This article reports on the project's long COVID aspect, involving experts, patients, and caregivers who identified vital health and social data. They utilized the Fast Healthcare Interoperability Resources (FHIR) standard to represent this information, facilitating data sharing among healthcare providers, improving patient care, and enabling research on the long-term effects of COVID-19 and long COVID.By incorporating social data, the project can also contribute to addressing healthcare disparities. This project is an important step in making healthcare more connected and accessible. It can help improve patient care, advance medical research, and reduce healthcare inequalities.