NC Health Information Exchange Authority Launches Stroke Data Registry

The North Carolina Health Information Exchange Authority and the Department of Health and Human Services have kicked off the state's first-ever Stroke Data Registry platform, offering a clearer picture of stroke incidence trends.

The southeastern US, dubbed the Stroke Belt since 1940, has consistently higher stroke death rates than the rest of the country.

North Carolina is part of this Stroke Belt region, with elevated stroke mortality at least 10 percent higher than the national average. Almost 300,000 North Carolina adults have experienced a stroke in their lifetime, with a stroke death rate of 42.4 per 100,000 people, according to CDC data.

"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,” Anna Bess Brown, executive director of the Justus-Warren Heart Disease and Stroke Prevention Task Force, said in a public statement.

The publicly available registry taps into data gathered from stroke patients from over 10,000 healthcare facilities linked to NC HealthConnex, the state's official health information exchange. Through this platform, the state aims to link information on medical history, demographics, lifestyle, and perceptions with clinical and laboratory data to support research, clinical care, and health policy decisions.

This data will be used to generate a visual dashboard displaying stroke prevalence by county and zip code to monitor comorbidities and pinpoint trends rooted in demographic factors such as race and age.

"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.

The dashboard consolidates data at the population level, safeguarding patient privacy by making it impossible to identify specific individuals. The NCDHHS Division of Public Health will use this information to pinpoint opportunities to enhance stroke care delivery and outcomes.

Upcoming improvements to the registry will incorporate data related to stroke patients from emergency medical services connected to NC HealthConnex.

"North Carolina is realizing its vision to create a more connected healthcare 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."