Opportunities and challenges in using electronic health record systems to study post-acute sequelae of SARS-CoV-2 infection: Insights from the NIH RECOVER Initiative
Mandel, HL; Shah, SN; Bailey, LC; et al., Journal of Medical Internet Research
Published
March 2025
Journal
Journal of Medical Internet Research
Abstract
The benefits and challenges of electronic health records (EHRs) as data sources for clinical and epidemiologic research have been well described. However, several factors are important to consider when using EHR data to study novel, emerging, and multifaceted conditions such as postacute sequelae of SARS-CoV-2 infection or long COVID. In this article, we present opportunities and challenges of using EHR data to improve our understanding of long COVID, based on lessons learned from the National Institutes of Health (NIH)-funded RECOVER (Researching COVID to Enhance Recovery) Initiative, and suggest steps to maximize the usefulness of EHR data when performing long COVID research.
Authors
Hannah L Mandel, Shruti N Shah, L Charles Bailey, Thomas Carton, Yu Chen, Shari Esquenazi-Karonika, Melissa Haendel, Mady Hornig, Rainu Kaushal, Carlos R Oliveira, Alice A Perlowski, Emily Pfaff, Suchitra Rao, Hanieh Razzaghi, Elle Seibert, Gelise L Thomas, Mark G Weiner, Lorna E Thorpe, Jasmin Divers; RECOVER EHR Cohort
Keywords
COVID-19; Long COVID, post-acute COVID-19 syndrome; SARS-CoV-2; clinical data research network; clinical research network; common data model; digital health; electronic health record data; electronic health record network; electronic health records; electronic medical record; epidemiological; infection; infectious; machine learning; medical informatics; pandemic; post-infection syndrome; public health surveillance; respiratory
Short Summary
This RECOVER report looked at how using electronic health records (EHRs) to study Long COVID can be both helpful and challenging. EHRs are digital records with a patient’s health information. One good thing about using EHRs is that researchers can use computer programs to find people who might have Long COVID based on their symptoms. This can help researchers figure out what might increase the risk of getting Long COVID, like age and other health problems. EHRs also provide quick access to health records from many patients, which speeds up Long COVID research. A main problem with studying EHRs is that the information in them is not always complete or consistent because different medical providers enter it in different ways. This makes it harder for researchers to find patterns or other details they need to better understand Long COVID. Even with these challenges, the researchers explain that looking at EHRs can still help us better understand Long COVID and improve the lives of people with Long COVID.