New statewide dashboard aims to increase data on sickle cell patients

The health care system struggles to identify where sickle cell disease patients are due to lack of data. This impacts the system’s ability to provide accessible care and meet patients where they are.

Now, a new statewide dashboard aims to streamline data collection on patients with the genetic blood disorder, which mostly impacts people of African descent.  

The new dashboard is part of a partnership with the U.S. Centers for Disease Control and Prevention, and is partially funded by a $6 million federal grant to help 16 states implement these portals. Each state receives roughly $2.5 million over a five year period ending in 2028. 

The new Indiana Sickle Cell Dashboard, which is accessible to the public, is led by researcher Brian Dixon at the Regenstrief Institute and a team of about 16 people. He said it’s already found that an additional third of people have sickle cell in Indiana compared to previous estimates. 

“It's a significant increase, which really tells public health that we need to be asking some of these other questions [like]: Where are the right providers?” Dixon said. “Are they in the right places? And do we need more? Do we need to work with the school of medicine to train more people to put them back out into the community to treat people?”

Dixon said roughly 1,800 residents in Indiana have sickle cell disease. Estimates project about 100,000 people have sickle cell nationwide, but there could be more. 

Sickle cell disease causes patients’ blood cells to get jammed in vessels, which can send them into sudden extreme pain crises, and potentially cause life threatening emergencies. Patients suffer from a range of problems including chronic pain, strokes, organ damage and often shortened life spans. 

The disease can be so debilitating that it can make it difficult for people to earn a steady income. 

Recent research shows that adults with sickle cell face indirect economic costs of around $3 million annually in lost productivity and another $2 million for uncompensated care by their caregivers. 

Since the disease is rare and most patients are on public insurance, which reimburses providers less than private insurance plans, there aren’t a lot of medical professionals who specialize in providing that kind of care. 

Some medical professionals say there are large stretches of states and regions where sickle cell care is nonexistent. Patients have reported that some medical professionals don’t even believe they’re in pain. So, people may drive multiple hours or cross state lines to get proper care. 

The dashboard researchers’ goal is to better understand where people with sickle cell live, and identify the gaps in accessible resources so public health departments and providers can set up optimal care, especially in rural areas, and to potentially reduce high medical costs. 

“Public health's number one priority is prevention,” Dixon said. “So, [if] we can prevent complications, or we can prevent comorbid conditions from developing in the first place, then we can prevent patients from having to pay those additional dollars down the road.” 

Lewis Hsu, a pediatric hematologist with the University of Illinois in Chicago, said the dashboard can also help providers and public health departments retain funds by not putting sickle cell satellites where they aren’t needed. 

“If you didn't have that information,” Hsu said, “then you could just say, ‘Well, there's people who might have sickle cell here, I'm gonna just put a satellite out there. [They] could spend a lot of money and time wasted where there really isn't any need.” 

It’s unclear if public health departments or researchers keep track of how often satellite sickle clinics are incorrectly placed and how much money is lost.

But in the long run, the dashboards have proven to be beneficial. In California, which built one of the first state sickle cell dashboards, most of its sickle cell care used to be concentrated in metro cities. Now, organizations have set up an entire network of sickle cell centers.

“In only 3 years, Networking California for Sickle Cell Care has reduced emergency department treatment and release visits by 11%, hospitalizations by 20%, and total length of hospitalization stays (days) by 50%,” according to a press release. “When NCSCC is fully operational, savings in reimbursable health care costs will exceed $50 million annually.”

States like Tennessee experienced a 29% increase in people with sickle cell using telehealth services during the pandemic. In Michigan, researchers determined that 65% of adults were never enrolled in the state health department’s funding program that provides supplemental coverage for people under 21.

Knowing the health factors and complications that a community’s sickle cell disease population experiences allows researchers and providers to support the patients. People with the genetic blood disorder tend to have shortened life expectancies, but recent innovations have helped them live longer.

But there are a lot of barriers to collecting data on people with sickle cell disease.  

In 1972, Congress passed the National Sickle Cell Anemia Control Act, which led to states implementing newborn screening programs to track sickle cell. But people born before that are not captured in the data. 

So, states rely on multiple sources to collect information such as the state’s newborn screening records, hospital discharge records from the emergency department and Medicaid claims data. 

Mary Hulihan, a health scientist with the CDC, said researchers often partner with some of the larger sickle cell clinics in their state to gather information. 

Some states already have data available online, but red tape has slowed others down.  

“There's a lengthy process in order to establish data sharing agreements between the programs that we fund and the holders of those data sources,” Hulihan said. “There is a lot of work done to ensure privacy and protection of the individuals who are in those datasets and who are in the project.”

Contact WFYI’s health reporter Elizabeth Gabriel at egabriel@wfyi.org

Side Effects Public Media is a health reporting collaboration based at WFYI in Indianapolis. We partner with NPR stations across the Midwest and surrounding areas — including KBIA and KCUR in Missouri, Iowa Public Radio, Ideastream in Ohio and WFPL in Kentucky.