Dermatology care is not a one-size-fits-all approach, especially considering the vast range of skin tones that sometimes present skin conditions differently or require tailored treatments or considerations.
As an early-career dermatologist, Nicole Negbenebor, MD, has become an expert on skin inclusivity and reducing barriers to accessing care. Her goal is to get more people the dermatology care they deserve.
After taking several years to do research on sickle cell disease at the National Institutes of Health and completing medical school and residency training at Brown University, Negbenebor is now the Mohs surgery fellow in the Department of Dermatology. The fellowship is a highly sought-after training program with an emphasis on Mohs micrographic surgery and cutaneous oncology.
Her clinical schedule can easily be enough to fill her work week, but Negbenebor does so much more. Since medical school, she’s made it a priority to keep an open dialogue about easing access to care for people from underserved communities. Her outreach efforts include educating patients and fellow providers about skin diseases that disproportionately affect people of color, increasing diversity among dermatology providers, and improving treatments through better representation in clinical trials.
“I think the worst thing, as physicians, is to not be able to reach the people you need to reach,” she says. “And I think it is very disheartening when somebody comes in with a disease that’s much more advanced and progressed than it should have ever gotten because of access or lack of information or understanding.”
A place to be heard and understood
Negbenebor, along with two other former medical students at Brown University, Uzo Okoro, MD, and Esther Henebeng, MD, started the Skin of Color Community, a platform for any person of color interested in learning about skin, hair, and nail conditions from dermatology experts.
“We noticed that there weren’t a lot of patients coming to clinic who were of diverse backgrounds,” she says. “And so, there’s a whole sector of people who are not getting care and don’t know when to go to a dermatologist.
“For example, we were talking about scalp seborrheic dermatitis. There was a man who came, and he had been suffering with it for years. He had used [dandruff shampoo], and he was like, ‘It’s so embarrassing. People see the flakes on my shirt. They see it on my eyebrows. And sometimes I don’t even like to socialize.’ The dermatologist who gave the lecture wrote him a prescription right there and said, ‘I will get you an appointment next week.’ That was great, because now he’s on his way to get it under control.”
The group hosts regular, virtual presentations and panels by dermatologists of diverse backgrounds. The pandemic required the events to shift to a virtual platform, which has now expanded its reach to audiences across the country as well as Great Britain and South Africa.
The community events also cover topics related to skin cancer, eczema, psoriasis, hair loss, and lasers that work for different skin tones.
“Now we have this global community where people want to know more about their skin,” Negbenebor says. “People have a lot of questions that they just put aside. They’re like, ‘Oh, it’s not a big deal,’ or ‘I’m just going to suffer in silence.’ And they open it up in the forum and then people will come up to us and be like, ‘Wow, I’m so glad that you’re having these events because I learned from other people’s questions, and it made me feel like I’m actually in a community.’”
Making clinical trials more diverse
Negbenebor also emphasizes the need for more representation of individuals of color in dermatological studies.
“I think the more we publicly talk about the shortcomings of research studies and participation and inclusion, the more pressure it puts on these companies and people who lead the studies to have more inclusivity,” she says. “If we have such strict guidelines for the quality of research to be published, then we should be sharing the demographic makeup of participants every time.”
Without publishing demographic data, Negbenebor says, research findings aren’t applicable to the general population.
“There are some companies that never study applications of sunscreen on darker skin tones,” Negbenebor says. “So, then you have that white cast where they formulate it to easily disappear on patients with lighter skin tones, but not darker skin tones. Do these companies feel like it’s an issue? Do they care that they’re losing that large a section of the population?”
Hiring investigators of color, educating and building trust with potential participants, and addressing funding are just a few ways to make clinical trials more diverse, according to Negbenebor.
Building trust is a game-changer
Better education and more thoughtful clinical trials inclusion criteria have huge potential to improve access to care, but finding providers that reflect a diverse patient population is key. And, fortunately, Negbenebor says the field of dermatology is becoming increasingly diverse.
“It makes me so happy,” Negbenebor says. “I’ve seen the diversity of applicants increasing recently in the number of people who are interviewed for medical school and residency training. There are a lot of checkpoints before somebody becomes a board-certified dermatologist, and I have seen more and more increased visibility of residents of color who then become attendings. And then also people in leadership positions; I’ve seen the increase in that.”
And when patients see themselves in their providers, it strengthens the patient-provider relationship, Negbenebor adds.
“To go to a place and to finally feel like you’re being heard, you’re finally being seen, you’re being taken seriously, you’re not being judged—that’s huge,” she says. “There have been people who I’ve seen in clinic who cried because it’s the first time they feel like they’re actually being listened to.”