Health Equity Module

Module Purpose

Pediatric cardiology has made amazing progress over the last few decades. This is particularly true for children with congenital heart disease (CHD), with many improvements in patient survival.1 Despite these improvements, health disparities still exist among children with CHD. Health disparities are defined as “a particular type of health difference that is closely linked with social, economic, and/or environmental disadvantage.” 2

Information on social, economic and other disadvantages that may impact health are often not collected in a standard way. This stops this information from being shared in ways that help large research investigations understand disparities in rare conditions such as CHD. Knowing where a child lives, and their associated social, economic, and physical background could inform efforts to identify and address disparities in health outcomes.

The Decentralized Geomarker Assessment for Multi-site Studies (DeGAUSS) tool gives investigators the ability to gain information about where a patient lives without directly exchanging protected health information (PHI) across institutions.3,4 DeGAUSS capabilities provide an opportunity for multicenter collaboratives, like the Pediatric Acute Care Cardiology Collaborative (PAC3), to strengthen approaches to identifying and responding to disparities. We aim to develop a health equity module that incorporates information on relevant social determinants of health. This module could be integrated into multicenter efforts to identify and then eliminate inequities within subspecialty populations, like those with CHD.


Getting Started with Data Entry into the Module

DeGAUSS is run on Docker, an open-source project for automating the deployment of applications as portable, self-sufficient containers that can run on the cloud or on-premises. Docker delivers the DeGAUSS images to your local computer. Once the DeGAUSS images are downloaded from Docker, patient addresses are run through the them without using the internet, ensuring protection of PHI.

Use the directions on the DeGAUSS webpage to download Docker.

There are additional resources for PAC3 Centers on SharePoint:


References

1.         Bouma BJ, Mulder BJM. Changing Landscape of Congenital Heart Disease. Circulation Research. 2017;120(6):908-922. doi:10.1161/circresaha.116.309302

2.         Disparities. U.S. Department of Health and Human Services. Updated 10/27/21. Accessed 12/08/2021, https://www.healthypeople.gov/2020/about/foundation-health-measures/Disparities

3.         Brokamp C. DeGAUSS: Decentralized Geomarker Assessment for Multi-Site Studies. Journal of Open Source Software. 2018;3(30):812. doi:10.21105/joss.00812

4.         Brokamp C, Wolfe C, Lingren T, Harley J, Ryan P. Decentralized and reproducible geocoding and characterization of community and environmental exposures for multisite studies. Journal of the American Medical Informatics Association. 2018;25(3):309-314. doi:10.1093/jamia/ocx128