Stakeholders in North Carolina have launched a stroke registry to support the state's efforts to improve the stroke care continuum.
Stroke is the fourth-leading cause of death in North Carolina and the fifth-leading cause of death in the United States. The N.C. Stroke Registry project aims to improve the system of care for stroke patients in North Carolina; identify areas in the stroke care continuum where interventions may be needed, whether that involves stroke prevention or post-stroke care measures; and address disparities in care.
The registry leverages demographic and clinical data on stroke patients from more than 10,000 healthcare facilities connected to NC HealthConnex, the state-designated health information exchange. This data is 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 North Carolina Health Information Exchange Authority (NC HIEA), in a statement. "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."
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," Brown said in a statement.
A study led by Duke University recently revealed that algorithms used to identify stroke risks perform worse for Black individuals. There is also a need for identifying stroke risks and outcomes in communities where there may not be larger hospitals or health systems. Better data collection 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.
The data in the dashboard is aggregated at the population level, meaning that it is not possible to identify specific patients by using the dashboard. The North Carolina Department of Health and Human Services Division of Public Health will be using this data to identify opportunities to improve stroke care delivery and outcomes.
Future enhancements to the registry will include data regarding stroke patients from emergency medical services that are connected to NC HealthConnex.
The project is funded by a grant from the Paul Coverdell National Acute Stroke Program and was built as a joint venture with the NC Stroke Advisory Council, the NCDHHS Division of Public Health, the NC HIEA and their technical partner SAS Institute.
