By: Victor Lee
The COVID-19 Interoperability Alliance (“Alliance”) was an informatics-focused collaboration between Clinical Architecture, Logica Health, MITRE, Regenstrief Institute, SNOMED, Apelon, CareEvolution, and the National Association of Community Health Centers. The purpose of the Alliance was to accelerate the healthcare community’s ability to identify, understand, and monitor COVID-19 information patterns. Founded in March 2020 on the heels of pandemic stay-at-home orders, the Alliance met periodically via a series of web conferences to collectively author, update, and share implementation guidance and interoperable value sets related to COVID-19.
One of the first activities that stemmed from the Alliance was the contribution of community time and expertise to the Logica Health COVID-19 Interoperability Project. Through this effort, Logica released a COVID-19 FHIR Implementation Guide on April 3, 2020. The Alliance also collaborated with SNOMED International to help define COVID-19 secondary conditions, complications, and a variety of Example COVID-19 Subsets.
In response to community requests, the Alliance also authored approximately 800 value sets and provided them to the public under a Creative Commons Attribution-NonCommercial 4.0 International License which confers the right to share, use, and build upon the data provided. Notable accomplishments in which Alliance value sets were used include:
- Agency for Healthcare Research and Quality evidence-based Care Transformation Support (ACTS) COVID-19 Evidence to Guidance to Action Collaborative
- Agency for Healthcare Research and Quality e-Care Plan for People with Multiple Chronic Conditions Project
- COVID-19 Healthcare Coalition Federated Observational Study of Clinical Therapeutics: Inpatient Famotidine
- National COVID-19 Convalescent Plasma Project Treatment-Control Study
The Alliance hosted a website to centralize several functions. One notable feature included a Downloads page which served as a repository of value sets that included contributions from CareEvolution, Logica, and the entire value set collection that was authored by the Alliance as mentioned above. Another feature was a Workshop page that enabled community members to see value sets in development, comment on their expansion terms, and suggest both revisions to existing value sets and the creation of new value sets.
Based on website analytics, the Alliance had broad reach. Site visitation was distributed across 68 countries, with the top 10 in descending order:
- United States
- United Kingdom
Now that we have settled into a “new normal” way of living with COVID-19, and the World Health Organization has declared an end to the COVID-19 public health emergency of international concern, the Alliance has disbanded. Although the website will be removed on June 30, 2023, the value sets will continue to be available in the Value Set Authority Center in deprecated status. Reflecting on the Alliance’s terminology activities over the last 3 years, the main lesson is that that there is a critically important role for both standardization and normalization.
Standardization efforts lead to the development of widely accepted and utilized terminologies such as ICD-10, SNOMED CT, LOINC, and RxNorm. Early in the pandemic, standard concepts became available for suspected and confirmed COVID-19 infection and SARS-CoV-2 virus PCR tests. Later on, we saw the emergence of additional concepts for therapeutics (e.g., remdesivir), vaccines, and new conditions (e.g., long COVID/PASC). Many of these concepts continue to exist today, while some of them have been deprecated and/or replaced by newer and more clinically relevant concepts. This ongoing curation of coded concepts, descriptions, and relationships is a vitally important contribution from terminology standards organizations.
Normalization efforts, on the other hand, are required because healthcare is delivered at a faster pace than standards development. Therefore, home-grown representations of concepts are typically developed locally and must later be normalized or “mapped” to standard terminologies for the purpose of interoperable information exchange, analytics, research, and other use cases for which we want to derive actionable insights from data that are pooled from more than 1 local provider. There will always be a role for local codes to complement and coexist with standard codes, so normalization will continue to be an ongoing challenge. For a more detailed discussion of terminology standardization and normalization, explore The Informonster Podcast, Episode 12.
The Alliance would like to thank all founding members, community collaborators, and visitors for their contributions to a successful effort. We have fulfilled our goal of accelerating the healthcare community’s ability to identify, understand, and monitor COVID-19 information patterns. If you’ve participated in any Alliance discussions or leveraged any Alliance resources, please leave a comment below to let us know both what went well and how we can better prepare for future public health emergencies from a terminology perspective.
Written by: Victor Lee