The new North Carolina Stroke Registry, launched by the North Carolina Health Information Exchange Authority (NC HIEA) and the N.C. Department of Health and Human Services, is intended to improve the stroke care continuum in North Carolina.

Specifically, the registry is aimed at identifying areas in the stroke care continuum where interventions may be needed, whether that involves stroke prevention or post-stroke care measures; and addressing disparities in care.

To achieve its goals, the registry leverages demographic and clinical data on stroke patients from more than 10,000 health care facilities connected to NC HealthConnex, the state-designated health information exchange. This data is then used to create a visual dashboard of the prevalence of stroke by county and zip code, to track analysis on comorbidities, and to identify trends based on demographics such as race and age.

“North Carolina is realizing its vision to create a more connected health care community statewide,” said Christie Burris, executive director of the NC HIEA. “By connecting to NC HealthConnex, data from a provider’s electronic health records can be leveraged to support chronic disease intervention and be used as a valuable tool for the public good. Thanks to both state and Federal funding, NC HealthConnex is becoming critical infrastructure. By acting as a health data utility, it provides a central hub for clinical data that can advance compatibility across networks and promote use cases such as the Stroke Registry.”

NC HIEA did stress that data in the dashboard is aggregated at the population level, so it is not possible to identify specific patients by using the dashboard.

Anna Bess Brown, executive director of the Justus-Warren Heart Disease and Stroke Prevention Task Force, said the registry is giving them a more comprehensive look at stroke care in North Carolina.

“Having this registry is providing us with data to explore areas of need in our state and to identify gaps in care so that we can address these issues,” said Brown.

NC HIEA cited a study from Duke University that found that the algorithms used to identify stroke risks perform worse for Black individuals. Adding that there is also a need for identifying stroke risks and outcomes in communities where there may not be larger hospitals or health systems, NC HIEA said that better data collection, as enabled through the new dashboard, could help improve these disparities.

“We’re not just capturing patient data from those hospitals that are very well-resourced but from everybody across the state, so we’re getting a more complete picture of stroke in our state. We’ll get a certain level of data from the population level from the HIE (NC HealthConnex); there’s no other device that can do that,” explained Brown.

NC HIEA said that future enhancements to the registry will include data regarding stroke patients from emergency medical services that are connected to NC HealthConnex.

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