Research informatics and the COVID-19 pandemic: Challenges, innovations, lessons learned, and recommendations

Abstract

The recipients of NIH's Clinical and Translational Science Awards (CTSA) have worked for over a decade to build informatics infrastructure in support of clinical and translational research. This infrastructure has proved invaluable for supporting responses to the current COVID-19 pandemic through direct patient care, clinical decision support, training researchers and practitioners, as well as public health surveillance and clinical research to levels that could not have been accomplished without the years of ground-laying work by the CTSAs. In this paper, we provide a perspective on our COVID-19 work and present relevant results of a survey of CTSA sites to broaden our understanding of the key features of their informatics programs, the informatics-related challenges they have experienced under COVID-19, and some of the innovations and solutions they developed in response to the pandemic. Responses demonstrated increased reliance by healthcare providers and researchers on access to electronic health record (EHR) data, both for local needs and for sharing with other institutions and national consortia. The initial work of the CTSAs on data capture, standards, interchange, and sharing policies all contributed to solutions, best illustrated by the creation, in record time, of a national clinical data repository in the National COVID-19 Cohort Collaborative (N3C). The survey data support seven recommendations for areas of informatics and public health investment and further study to support clinical and translational research in the post-COVID-19 era.

Keywords: COVID-19; CTSA; N3C; informatics; research.

Fig. 1.

N3C sites can submit EHR data for their COVID-19 population in any one of the four data models. Once transmitted to NCATS, a transformation pipeline maps fields and value sets from the source data models to the OMOP data model. In the near future, privacy-preserving hashing methods will allow for some deduplication of patients as part of the pipeline. Harmonized data in the OMOP model are made available to researchers in a secure analytics enclave. N3C, National COVID-19 Cohort Collaborative; OMOP, Observational Medical Outcomes Partnership; i2b2, Informatics for Integrating Biology and the Bedside; ACT, Accrual to Clinical Trials network; TriNext, company named TriNext.