The Code to a Healthier Philadelphia

When Jazmin Evans, who goes by “Jae,” began dialysis in July 2019, she had been managing Stage 3 kidney disease with medication for seven years without any sign of improvement. As her kidney disease progressed, it became clear that dialysis and eventually a transplant were her only path forward to a healthier and more independent life. Evans, a student in her twenties working toward a Ph.D. in Africology and African American Studies, learned to connect the at-home dialysis machine to a port in her abdomen for nine hours each night, a process that replicated the work of a healthy kidney. “Chronic illness is really mind-bending in a lot of different ways because your body is supposed to work in these normal operating procedures, but sometimes it just doesn’t,” she said. Her healthcare provider told her it could be eight years before she would be eligible for a kidney transplant.

In July of 2023, however, Evans received a letter that would change her life. She was eligible for a new kidney as soon as one was available — four years earlier than previously expected. She was told that the blood test, called eGFR (for estimated glomerular filtration rate, a measure of kidney function), used in her original evaluation had delayed her eligibility by years, because it assumed, because of her race, that her kidneys were healthier than they really were. In fact, Evans, a Black woman, should have been eligible for a kidney transplant in 2015, three years after her diagnosis. Since then, the race-based inequity in the test had been corrected.

“There’s no biological basis for [some of the race-based assumptions about health],” Dr. Richard Snyder, executive vice president and chief operating officer of Independence Blue Cross (IBX), said. “I don’t think it was malicious [to include them] per se; I think it was based in part on subjective fact patterns. But in the end, it has an adverse impact on patients.”

On the other end of Evans’ letter was a team of highly empathetic healthcare professionals at Jefferson Health. Jefferson Health is part of the Regional Coalition to Eliminate Race-Based Medicine. (The group was convened by IBX in 2023, bringing together 13 Philadelphia-area health systems: Children’s Hospital of Philadelphia, Doylestown Health, Grand View Health, Inspira Health, Jefferson Health, Main Line Health, Nemours Children’s Health, Penn Medicine, Redeemer Health, St. Christopher’s Hospital for Children, Temple Health, Trinity Health Mid-Atlantic, and Virtua Health.) The coalition is committed to working together to phase out the use of race as a variable in the clinical decision support tools that are used by healthcare professionals to make care decisions. These tools take into account patient demographics, medical history, lab results, vital signs, and other clinical information. These variables are then weighed against established medical guidelines to provide recommendations for diagnosis and treatment.

The use of race in such tools to “correct” the outputs, however, lacks evidence and can perpetuate historic inequities in healthcare. The eGFR test used to evaluate Evans’ kidney function, for instance, demonstrates such usage. Its inclusion of race was based on a 2009 study that reported that Black patients tended to have higher functioning kidneys. Later, the study’s findings were found to lean on the discriminatory assumption that Black patients are more muscular, a view that is not based in fact. As a result, Evans’ eGFR test overestimated her kidney function and she was moved back in the transplant list despite the reality of her condition. Her experience is not uncommon.

“For the [Regional Coalition], our focus is: Can we eliminate race [as a variable in diagnostic tools] and not treat patients differently based on race?” Snyder said. The task is not as simple as deleting a line of code; it requires a significant amount of collaboration across the healthcare industry. The Regional Coalition worked with hospital labs and their outpatient lab providers to update the algorithms in their testing equipment, which sometimes meant purchasing new hardware.

But for patients like Evans, the impact of removing race as a variable in diagnostic tools was immediate. “We are committed to equitable kidney transplant access and combating health disparities through collaborative efforts. Our kidney transplant program achieved a remarkable milestone, powered by our team’s relentless dedication and pioneering work: Numerous team members went above and beyond their traditional roles to achieve the race-neutral adjustment. The results serve as a resounding testament to our team’s extraordinary efforts,” Pooja Singh, the enterprise director of kidney transplant services for Jefferson Health, said.

“In the first year, 2023, more than 700 Black patients who were previously not on kidney transplant lists in South Jersey and southeastern Pennsylvania made it onto transplant lists … and more than 60 Black patients received kidney transplants [that year] as a result of this tool being changed,” Snyder said. Evans was one of them. She received a kidney transplant and is now able to live a more independent and fulfilling life.

To date, all the Philadelphia-area hospitals in the Regional Coalition have transitioned away from race adjustments in clinical decision support tools that help guide lung, kidney, and ob-gyn care.

As the largest health insurance company in the area, IBX has established trusting partnerships with healthcare institutions within its network and is committed to ongoing dialogue with these institutions to improve patient outcomes. “There’s been this long-laid foundation of collaboration,” Dr. Rodrigo Cerdá, senior vice president of health services and chief medical officer of IBX, said. Working with their provider network, IBX promotes preventative medicine and programs that help ensure everyone in the region has a fair chance to achieve their best health, regardless of their background. “Our mission is to improve the health and well-being of the communities we serve,” Cerdá said. “And thinking about the fact that we serve a diverse population is how we drive those better outcomes for the entire community.”

Philadelphia’s diversity is one of its strengths. At the same time, the city’s multicultural population can carry the weight of societal and environmental inequities that affect the overall health outcomes of the community. The city has higher incidences of cardiovascular disease and homelessness and has longer waits to see doctors. It also ranks last of all 67 counties in Pennsylvania for health outcomes.

The city’s health disparities are driven by the intertwined challenges of poverty, poor access to transit, lack of healthy food options, and inconsistent medical care. “When we think about why AHE [the Philadelphia-based initiative Accelerate Health Equity, of which IBX is a member] exists and what we’re looking to accomplish as an initiative, improving and dismantling racism within the city’s healthcare systems are our main goals. We want tangible improvements for Philadelphians and their overall health and well-being. Given our city-wide partnerships and our champions within Philadelphia health systems, AHE is best positioned to tackle health inequities in four key areas: access to care; chronic disease and injury prevention; maternal and infant health; and social determinants of health,” Dr. Erica Dixon, the director of AHE, said.

 “Our mission is to improve the health and well-being of the communities we serve.”

To make a dent in these issues, IBX and the 11 other leading healthcare institutions in Philadelphia that make up AHE are focusing on the social determinants of health that affect the community. The group is working to design measurable pilot programs to combat the inequities present in issues like maternal morbidity and mortality, cancer screening and prevention, neighborhood conditions, heart disease, and more. The Regional Coalition extends the work of AHE. “[Societal determinants of health] start at the top of the funnel with things that are not health-related at all,” Snyder said. “Clean water, clean air, the absence of housing, all the way down to disposable income and jobs.” By bolstering support for historically underserved communities across all aspects of life, we can better improve health outcomes.

That often means overcoming a lack of awareness or access to care. For example, the organization might tap community leaders to spread awareness about cancer screenings or find a way to provide more flexible at-home care for new mothers. “There are some cases in which your standard approach doesn’t work for everybody,” Cerdá said. “It’s not about giving some parts of our population unfair advantages compared to others … It’s more about meeting people where they are. We are fortunate in this region to have a very diverse population, so we can’t have a one-size-fits-all clinical approach.”

Inspired by her experience with her kidney transplant and the work of the Regional Coalition, Evans is now a Ph.D. candidate whose research includes social biases in clinical algorithms for medical decision-making. “I’m taking what I have learned as both a patient and a researcher and really empowering and educating people in our community to be able to do the same things for themselves but on their terms,” Evans said.