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Measuring sickle cell burden with a public health dashboard
The Indiana Sickle Cell Dashboard gives patients, providers and public health officials interactive visualizations of sickle cell disease prevalence and burden.
Chronic disease management continues to present a unique challenge for healthcare stakeholders, but to effectively manage these conditions, assessing disease burden and prevalence is key.
For conditions like sickle cell disease -- a group of inherited blood disorders that negatively impact the protein hemoglobin's ability to carry oxygen to red blood cells -- capturing information about disease impact is a significant public health need.
A disproportionate number of the 100,000 Americans impacted by sickle cell each year are of African ancestry or identify as Black, raising important considerations around healthcare access, quality and equity.
Individuals with sickle cell disease also experience episodes of extreme pain -- called pain crises -- that occur as a result of blocked blood flow. Alongside chronic pain, these patients are also at increased risk of adverse events such as infections, eye problems, lung problems, kidney disease and stroke.
To improve public health surveillance for sickle cell, Regenstrief Institute recently launched the Indiana Sickle Cell Dashboard, which uses de-identified clinical and administrative information to provide interactive data visualizations of the condition's burden and prevalence.
Brian Dixon, Ph.D., MPA, FACMI, FHIMSS, FAMIA, MACE, professor at the Indiana University Richard M. Fairbanks School of Public Health and interim director of the Center for Biomedical Informatics at Regenstrief Institute, recently discussed how the dashboard can help improve public health efforts around sickle cell disease.
Hurdles to communicating the impact of sickle cell disease
Chronic diseases like sickle cell present a unique challenge for public health in terms of studying and communicating their impact on affected populations.
Dixon underscored that one of the major hurdles is a lack of information on adolescents and adults living with sickle cell disease.
"Many state health departments capture robust data on newborns who screen positive for sickle cell disease," he explained. "But as these individuals become adolescents and adults, public health systems lose track of them."
As a result, there is a lack of high-quality, population-level data available on individuals with sickle cell.
"Moreover, linked data sets on sickle cell disease do not exist. It is challenging to understand the variety of places patients with sickle cell disease seek care and the quality of that care," Dixon continued.
He indicated that this dearth of linked data is a major limitation of most public health dashboards that the Indiana Sickle Cell Dashboard is designed to address using population health management principles and clinical informatics. Informed by the development and maintenance of Regenstrief's COVID-19 dashboard, the sickle cell dashboard measures all the people in the state living with the disease, rather than those who are newly born with it.
Dixon emphasized that traditional public health dashboards and chronic disease surveillance measures don't necessarily provide a comprehensive snapshot of the prevalence of a condition like sickle cell.
"[Public health dashboards] often provide only one view of patients -- like from Medicaid programs, children's health programs or individuals who show up in the emergency room," he said.
To overcome these limitations, stakeholders must link data across both clinical and public health sources. Doing so allows public health researchers to create a comprehensive data set of impacted individuals and the healthcare services they utilize.
"This helps us better understand the many ways in which patients with [sickle cell disease] interact with public and private health systems," Dixon stated.
Using the dashboard
By highlighting prevalence and how those with sickle cell interact with the health system, stakeholders like the Indiana Department of Public Health can use the dashboard to inform local public health programs and policy development.
Specifically, public health agencies can use the dashboard to identify areas with high concentrations of sickle cell patients. The tool presents sickle cell rates per 100,000 people, a standardized measure that allows end users -- including individuals living with sickle cell disease, primary care providers, specialists treating the disease and public health officials conducting disease surveillance -- to compare disease burden and prevalence between counties, regions and states.
The Indiana Sickle Cell Dashboard will be updated twice a year in concordance with data collection efforts led by the Indiana Department of Health. This data will be combined with Medicaid data, information pulled from the Indiana Department of Family and Children's Services, and clinical data from the Indiana Network for Patient Care and the Indiana Hemophilia and Thrombosis Center.
The dashboard also provides several distinct insights related to sickle cell, showing not only the number of individuals diagnosed with the disease, but how many are in treatment. Additionally, the tool shows comorbidity and death rates by county.
This information is presented through dynamic visualizations to improve data interpretability.
"This enables [public health stakeholders] to develop educational resources and programs to support these patients," Dixon underscored. "[Public health officials] can also partner with providers in those areas, providing education on guidelines for optimal care, like recommended medications."
The insights pulled from the dashboard are also valuable for guiding public health policy, as the tool is one of the first to provide a comprehensive, state-level view of the impact of sickle cell disease.
"From a policy development standpoint, public health can examine whether there are disparities in access to treatment or medication to make recommendations for changes to programs like Medicaid," he noted.
He also highlighted that policymakers could examine whether patients in certain counties have access to specialists, which could enable work to expand existing programs or support telehealth policies for sickle cell care.
Dixon emphasized that public health stakeholders who might be interested in building tools like the Indiana Sickle Cell Dashboard must consider both technical development and stakeholder engagement.
"Technical development of the dashboard was not the challenging part," he indicated. "The bigger challenge is bringing together the various stakeholders who hold data on patients with sickle cell disease -- urging them to share data and create governance that enables dashboards like this to be developed."
He underscored that initiatives like the dashboard are already underway across the United States, and resources are available from the CDC to support state and local development efforts.
"Efforts like this are precisely the public health activities that CDC is seeking to achieve as part of its Data Modernization Initiative," he explained. "Right now, public health has a moment to develop infrastructure and tools that will revolutionize population health and support management of the next pandemic."
He further noted that if researchers can build and deploy these so-called "peacetime" tools for chronic diseases like sickle cell, public health departments will be well-positioned to create and share visualizations for emerging infectious diseases.
Those tools and integrated data sources could bolster future work to respond to public health threats, streamlining epidemic management and vaccination campaign deployment.
"I encourage all public health stakeholders to keep at the hard work of building community alliances that will enable tools like this to exist and evolve," Dixon concluded. "[This work] is worth it to build the coalition and begin to look together at the data. Collaboratively, we can improve care and outcomes for those with sickle cell disease."
Shania Kennedy has been covering news related to health IT and analytics since 2022.
