Accepted for/Published in: JMIR Medical Informatics
Date Submitted: May 20, 2022
Open Peer Review Period: May 20, 2022 - Jun 13, 2022
Date Accepted: Aug 28, 2022
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Using Electronic Health Records for the Learning Health System: Creation of a Diabetes Research Registry
ABSTRACT
Electronic health records (EHRs) were originally developed for clinical care and billing. As such, the data are not collected, organized, and curated in a fashion that is optimized for secondary use to support the Learning Health System. Population health registries provide tools to support quality improvement. These tools are generally integrated with the live EHR, are intended to utilize a minimum of computing resources, and may not be appropriate for some research projects. Researchers may require different electronic phenotypes and variable definitions from those typically used for population health, and these definitions may vary from study to study. Establishing a formal registry that is mapped to the Observation Medical Outcomes Partnership (OMOP) common data model provides an opportunity to add custom mappings and more easily share these with other institutions. Performing pre-processing tasks such as data cleaning, calculation of risk scores, time-to-event, imputation, and transforming data into a format for statistical analyses will improve efficiency and make the data easier to use for investigators. Research registries that are maintained outside the EHR also have the luxury of using significant computational resources without jeopardizing clinical care data. This paper describes a virtual Diabetes Registry at Atrium Health Wake Forest Baptist and the plan for its continued development.
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Copyright
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