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Ndifreke Ikpe’s Civic Science Fellowship focused on the use of race in medical guidelines

Ndifreke Ikpe’s work has often landed her in places where different worlds need to meet, such as connecting mothers to mental health services or facilitating conversations among health executives. She reflected on what to call this kind of work.

“I always knew I had a passion for social justice and access to healthcare,” she says, “but I didn’t necessarily understand what that looked like in translation.” The translation came in 2024, when Ikpe joined the Civic Science Fellows program as a Doris Duke Foundation Racial Equity in Clinical Equations Fellow, an initiative that places fellows inside medical organizations to rethink how race is used in clinical algorithms and the decisions they drive. That’s when she realized, “Oh, I’ve been doing civic science work for quite some time.”

Ikpe’s path to the Fellowship wound through roles that taught her to work across boundaries. At the Joseph J. Peters Institute in Philadelphia, she coordinated maternal mental health services across two separate teams, building a centralized intake system to connect families with the care they needed.

“I truly learned about the importance of working in interdisciplinary spaces in order to have a real, lasting impact,” she says. The work put her at what she calls “the interconnected point,” talking to patients and families while also coordinating with nurses and administrators. “I loved the fact that I was hands-on, on the ground, while also collaborating with care teams and organizational leadership.”

At the Aspen Institute, she moved further into that connective role, facilitating programs for senior health executives. She watched what happened when health executives were given dedicated time to learn together. When her Fellowship began, she got to experience that kind of dedicated time as a participant. “I realized this is a transformative experience,” she says. “Now I understand, I believe in fellowships. I believe in having those curated and intentional spaces for people to co-learn together.”

Her Fellowship placed her at the Council of Medical Specialty Societies (CMSS)—the umbrella organization for more than 50 U.S. medical specialty societies, the groups that write clinical guidelines and publish major medical journals. Focusing on clinical algorithms “was the perfect placement for me to understand my passions, but in actual practice.”

Ghosts in the algorithms

The issue at the heart of Ikpe’s Fellowship is how race has been used as a biological category in clinical practice for centuries, resulting in medical guidelines that can harm the patients they’re meant to help. Her work is about undoing that.

“The main point of this work is that race is a social construct, but oftentimes it’s conflated with biology or other factors in clinical algorithms and guidelines,” Ikpe says. “And this miscategorization results in poor health outcomes for marginalized populations.”

Take the eGFR equation, which gauges kidney function. For years it carried a “race correction” that made Black patients’ kidneys look healthier than they actually were, delaying diagnoses, referrals, and placement on transplant waiting lists. After the correction was removed, many Black patients who had been held back moved up the list and received transplants. “That,” Ikpe says, “is what good quality healthcare is.”

Specialty societies across medicine have begun correcting these tools. The American Academy of Pediatrics has worked to remove racial bias from the guideline used to estimate a young child’s likelihood of a urinary tract infection, a factor that could lead some children to be under-tested. The American Society of Hematology widened its absolute neutrophil count reference range: neutrophils are infection-fighting white blood cells, and the “normal” band labs relied on was drawn largely from white populations, leaving many healthy people of Sub-Saharan African descent flagged as abnormally low, which put them at risk of misdiagnosis. 

“It’s been surprising to see how this work has an impact across the continuum of care,” Ikpe says. “From surgery to pediatric care to thoracics and across all specialties.”

During her Fellowship, Ikpe developed the Encoding Equity Implementation Toolkit for clinical and specialty societies. It’s a free, online resource that walks a society through examining and changing how race is used in its own guidelines and algorithms, including making the case to leadership, auditing current tools, and putting changes in place. She built it from interviews with societies that had already done the work to analyze and change their guidelines.

“I hosted a series of qualitative interviews,” she says. “I was able to learn from individuals and organizations who have already made significant progress.” She worked closely with a task force she helped launch, “to really get to the nitty-gritty of the work. Folks who have actually done the work and understand the science.”

The toolkit is now publicly available. “Any society or any clinician who’s interested in this work, they have access to this resource,” she says. “That’s a win from the Fellowship I’m definitely proud of.”

Ikpe was one of four Doris Duke fellows focused on racial equity in clinical equations, each approaching the issue from a different angle. Donya Ahmadian worked with medical students; Jyoti Madhusoodanan, a science journalist, focused on how bias gets communicated to the public; and Luyi Adesanya worked to build a coalition pushing to adopt the new race-neutral equations. “Here, at my junction, I’m a little bit more involved in the science of it,” Ikpe says. “But our work completely overlapped.”

The four met weekly, in addition to the broader Civic Science Fellows meetings. “Being able to have this cohort of folks working together has been, honestly, such a game changer,” she says. 

Midway through her Fellowship, CMSS received funding to launch the Encoding Equity Alliance, a coalition that brings together more than 50 specialty societies, along with researchers, journal editors, and technologists, to coordinate the effort to strip the misuse of race from clinical guidance. Ikpe helped build it from the ground up. “It was fun. It was exciting,” she says. “I definitely felt stretched, and I was learning so much.”

The Alliance runs task forces on research, AI, journals, and clinical practice, along with a grant program and an annual summit, and serves as a public hub for the work. Ikpe manages the program, a role CMSS hired her into as a staff member once her Fellowship ended.

“The Alliance creates this community of members who want to share this work, who want to develop resources and raise awareness,” she says. “This isn’t meant to be something that’s kept. The minute we’re able to develop something for the community, it’s on the website, we’re sharing it with our network, we’re presenting on it at different conferences.”

In November, the Alliance partnered with PBS NOVA to screen two films at the CMSS annual meeting: Unwinding Race, Better Research for Better Health and When Machines Prescribe. For Ikpe, storytelling is central to the work. “On the other side of this junction of addressing how race and ethnicity are used in clinical guidance, there’s a patient,” she says. “Or a family, or access to quality care. Stories move people.”

The current political climate has made this work both harder and more urgent. “Without initiatives like this, everyone doesn’t have access to quality care. Everyone doesn’t have access to good care,” she says. “Equity science focuses on everyone, especially those in need.”

Bridging the gaps

Ikpe’s commitment to health equity is rooted in her own history. She grew up in a low-income household in West Philadelphia, the daughter of Nigerian immigrants. “I was on every assistance program,” she says. “I’ve witnessed the equity gap, but I’ve also experienced it. I’ve experienced bias. I’ve experienced people not taking my pain seriously.”

When she was a child, her mother had a stroke and a brain aneurysm, and Ikpe became a part-time caregiver. She accompanied her mother to doctor’s appointments, helping her understand the medical jargon and helping the doctors understand her mother. “There was a health literacy gap there, because she has a strong accent,” Ikpe says. “I remember growing up and realizing some of the doctors weren’t always being the kindest to her.”

The experience shaped her long before she had language for it. “I didn’t know what health equity was,” she says. “But I cared about social justice, and I also cared about making sure everyone has access to good care, not just certain populations. Finding that overlap with my lived experience has brought me here.”

Today, Ikpe manages the Alliance, coordinates a grant program supporting 10 specialty societies, and helped put on the Encoding Health Equity Summit in June. CMSS has applied to host another Civic Science Fellow, this time focused on health misinformation—and Ikpe hopes to mentor whoever comes next.

She misses the direct patient work she did at JJPI sometimes—the immediacy of it, the visible impact. But she’s drawn to the research side now—the evidence that clinical guidelines are built on. “I do feel like I’m where I’m supposed to be,” she says. “The research matters. Being able to understand the behind-the-scenes of it all and apply changes in that space.”

The work of removing the hidden race corrections that gate care isn’t finished. “We haven’t solved the problems yet,” she says. “Patients are still losing access to quality care.” But there’s momentum, and a growing community committed to change.

Foundation support matters now more than ever, Ikpe says. “It’s been a game changer, especially witnessing government funding being stripped from so many research institutions doing significant work. If it weren’t for philanthropic organizations like the Rita Allen Foundation or the Doris Duke Foundation, we wouldn’t have the capacity to enable change in these spaces.”