The Dose - On the Need for Diversity in Medical Illustrations

Episode Date: April 26, 2024

In medical school, students learning about illness, pathology, and disease are trained almost exclusively on images of white patients. Even materials on illnesses that predominantly affect Black people, like sickle cell disease, and textbooks used in medical schools in countries where most people are Black, are filled with illustrations of white bodies and white skin. This leaves doctors underprepared to care for Black patients. For Nigerian medical student and illustrator Chidiebere Ibe, accurate representation is a starting point for health care equity. Ibe has founded Illustrate Change, the world's largest open-source digital library of medical illustrations featuring people of color. In the newest episode of The Dose podcast, host Joel Bervell talks to Ibe about his efforts to make inclusive imagery widely accessible — a critical step toward building health systems that can provide Black patients with the care they deserve. This is the third episode in a new series of conversations with leaders at the forefront of health equity.

The Dose is a production of the Commonwealth Fund, a foundation dedicated to healthcare for everyone. My guest on this episode of The Dose is Chidiaberry Ibe. He's at the forefront of a transformational change in the field of medicine. His work addresses a healthcare gap that I also noticed during my first days in medical school. In medical school, when we talk about illness, pathology, and disease, it's often illustrated exclusively on white patients as models. And I couldn't stop thinking about that. Lyme disease is one example that I've talked about on TikTok. Doctors are taught what a Lyme rash looks like on lighter skin in the United States,

not on darker skin tones. That disparity leads to delayed treatments for Black patients who have Lyme disease, causing an increased likelihood of late manifestations of the disease, like neurological and heart complications. That's just one example of the serious implications of accurate and inclusive illustrations on patient care and outcomes. Studies show that in some textbooks, less than 5% of medical images show people with darker skin tones, and only 8% of the people making these images identify as people of color. So it's a huge privilege for me to have this conversation with someone whose work I admire so deeply. Chidiabere Ibe is not only the creator behind Illustrate Change,

building the world's largest library of diverse medical illustrations to help increase representation in healthcare. He's also a third-year medical student at Copper Belt University in Zambia, and his home is in Nigeria. He's also creative director and chief medical illustrator at the Journal of Global Neurosurgery and medical illustrator at the International Center for Genetic Diseases at Harvard Medical School. But he is maybe best known for the global conversation and sensation he unleashed by posting a black fetus illustration in 2021. I remember that my TikTok video that I made on his work received over 5 million views in 24 hours, sparking conversation and showing the importance of his work.

Thank you so much for joining me for this conversation, Chidi Berry. Thank you so much, Joe, for the wonderful introduction. I'm honored to be here. Absolutely. So let's begin by talking about your project, Illustrate Change. You're building a digital library of medical illustrations featuring people of color. Right now, there are over 100 images, including maternal health, orthopedics, dermatology, ophthalmology, and so much more. What's the primary goal? And is this resource downloadable and free to all? The idea was to bring more diversity and inclusion in medical literature to see how to, you know, give access to these images. Because one of the problems we had

in terms of, you know, these images was access to these illustrations. So we decided to make it free and open source to everyone, you know, who could download the images and use them for educational purposes. Of course, giving reference to the source. So for now, the images are open source, they are free, they're downloadable. And continually, we are uploading more artworks on the website. So I would say it's open source, it's free for anyone and accessible by everyone. I love that. And both of us are medical students right now. We're still learning, but we also know, and I think we both recognize this, that observation is critical. So much of patient care is determined by observations made by doctors, nurses, other medical professionals.

Given the historical absence of this type of visual information and illustrations, how do you prioritize which images are most urgent to create and add? Is it being done by like deceased category, epidemiological data or other factors? Well, considering data is always, I would say the important thing I consider when creating an artwork. And a couple of times, you know, I mean, you could also tell, most times when you create a piece,

you know, you go through the comments, you see people always talking about if we create a piece around this particular topic, you know, like some time ago, I asked my followers on Instagram what area I should create artworks for. out or if we'll create a piece around this particular topic you know like some time ago i asked my followers on instagram what area i should create artworks for so i had a lot of you know requests about certain topics to create more and um for me i had to make deep research how does this affect the black community i don't do so much of anatomical illustrations because anatomy really

hasn't really changed so much but focusing on areas in medicine in terms of dermatology or you know diseases that are not really talked about that much sickle cell disease you know which is very common in africa yet there is little visual creations around you know sickle cell disease affecting black people dermatology you know um malaria for example you know affecting the black community and not so much having done, you know, regarding that. So, and also I tend to also pay attention to requests. You know, I had emails from several clients who had complaints who were patients, you know, who had said, you know, they felt unseen because of the particular condition they had, like lupus, for example. So I focus on areas that affect the Black population

and the minority group generally. Yeah, I think there are multiple things in what you just said that I resonate so much with. The first is that crowdsourcing and listening to the audience. I think I always say this, and so maybe I'm on my soapbox right now, but I think social media is a beautiful way to build community, especially with communities that have been overlooked. And the comments, as you mentioned, are this incredible space to see what are people focusing on or what have they not seen online or can't find that information in other places so that we can add to that information. And you've mentioned three already, malaria, sickle cell, and lupus.

I'm hoping we can actually maybe dive a little bit deeper into each of these diseases and the role that images play for people of color and enhancing outcomes for patients. So for example, I think about lupus has, for a lot of patients, what's called a malar rash that happens on your face. But oftentimes it can be difficult to see in black patients. I've never, I actually still even to this day am unfamiliar with what it looks like because my textbooks haven't shown me. So if you can talk about each of those diseases a little bit more about the power of starting with images as diagnostic tools. Well, let me just start from the, from lupus as you earlier mentioned, the condition lupus.

So I think it's a month ago, I had a friend of mine who reached out to me and said that she met someone at the airport that was in Nigeria. She met someone at the airport and she had lupus. So a friend of mine discussed with her that he knows someone that creates black illustrations for black people. And she said that she's tired of explaining that lupus is not something diabolical because in Africa, we consider lupus

because you have hair loss, you know, tend to have the malar rashes. You know, in Africa people misconstrue it as, you know, having, you know, being diabolical or having witchcraft. So because of lack of understanding, because of lack of education, and because of lack of diverse illustrations that communicate this condition accurately. And this was a research carried out in South Africa, which was carried out among black patients who had lupus. And talking about malaria, which is very common in Africa. I mean,

if you Google malaria right now, all the resources, all the illustrations you'd see is malaria on a white skin. And this is a disease that affects, you know, I mean, so many black people die of malaria every year, every year. Yet the disease process is not being accurately illustrated on black skin. We don't know how it looks like, how it affects black people. And I mean, it's sad to realize that this is, you know, a disease that affects Africans, yet the images you see on social media or on the internet does not show any on black people. I mean, it's something to really consider. And talking about sickle cell, sickle cell has been, I mean, it's really a topic that I'm also passionate about because I have friends around me who are sickle celled and they feel so underrepresented.

You know, in certain times when I created an artwork around sickle cell, because from research, sickle cell affects over 300,000 babies every year in West Africa. Right. But there is no accurate research that show sickle cell on black people having the foot ulcer having the neck ulcer you know how the the blood and the blood are looking sickled and a lot of people have created advocacy around sickle cell so but if we decide to create illustrations that depict all that you know that represent the sickle cell community it could be a greater approach to advocating for them oh that's so i love what you're doing it's so powerful the way that you've just laid it out there one of my favorite series that i've created uh called Derm on Darker Skin. What I go and do is I show what a dermatology condition looks like on lighter skin and on darker skin. Super simple,

but a lot of people resonate with it because it might be the first time they're seeing themselves represented. But what I've also realized is that a lot of people will start asking the comments, is this a problem only here in the United States or worldwide? And I'm curious from your experience, can you talk maybe about the education, just like going to school in Zambia, in medical school, what does like a dermatology unit look like? Are you getting this education on darker skin tones? Are you not getting it? Just your personal experience. You know, I think that's really a fantastic question. You know, my first day in medical school, I was so excited about lectures, going to medical school.

And we had a class in pathology and studying the diseases, skin conditions. And the lecturer came in with a PowerPoint and showed us varieties of skin conditions. I bet you none was on a black skin. None was on a black skin. And for me, that's not very vocal in class. I didn't know how to ask my lecturer, why are these not in black skin? Because our patients are predominantly black people. Yet the research is using it to get to medical students. None, I mean, I'm not exaggerating, none was on a black skin. It was really a problem for me because i mean taking back in 2021 when

nigerian medical students that asked him how does heat rash look like on the black skin they said it look reddish on the black skin and that's to say that our literature our textbook play a predominant role in how medical students diagnose skin conditions like heat rash and that's to talk about my school where you know resources were all were all white-centered. And, you know, in recent times, I decided to meet the school leadership to see how I can contribute my own, you know, experience or probably review, you know, their teaching age. But, you know, it's difficult to teach doctors who already know, you know, they never accepted they know something or they don't know something, you know.

So it's really difficult, yeah. But I would say that predominantly our teaching resources are white centered our mannequins for example you know our teaching models and mannequins are all white centered you know non-black and i think i think there is really so much to do because talking about the research data predominantly does that affect the united states right but because of lack of data in Africa, it's difficult to really enunciate this data among African people, among Black people because of lack of resources, of data, education. And I would say one thing, the difficulty in having access to this data is not because there are no Black images. For example, there are patients who

come with complaints of simple conditions and the dermatologists would have photographs of this condition but they never tend to release them for public use or for research purposes right and that can limit access to these illustrations yep so these images are there but i think in the archive of the dermatologists and they're not giving you know they're not being accessible for educational purposes. Wow it's so fascinating to hear how universal what we're talking about is the fact that it's not just here in the United States that there's a lack of diversity illustrations but even places where there's predominantly black people still has this same lack of information that's spread and then the second thing you said that I really resonated with too is the fact that as students the fear of reaching out to kind of doctors and being able to have that conversation

there. Are there any other illustrations you'd want to point to that you think are really powerful that you've worked on? Well, in recent times, I've also worked on a powerful artwork called Discast. I mean, it's not a medical condition, but call it the scars because you know a couple of times um most black people were always given alternative or cesarean section other than number of vaginal beds you know and um and if you take my instagram you'd see i had did you know i did i collaborated with a fellow artist of mine we did from different races you know the latinos the white people the asians having the scars from serine section. And it was about, you know, having, you know, speaking about people who have gone through serine section as a final alternative who were not given options of vaginal beds. And because of that, you know, it's also been proven that continuous, you know, you know, the serine section in a particular

spot can also be dangerous for the mother's health. So I created a piece about the scars and also I created a piece called emancipation. I mean, it's not a medical condition, but you know, um, it was about, um, Serena Williams when she went through the racism from a nurse, you know, and that was to talk about also um to expose i would say or to really um trauma light on the issue of disparity in health care that is not about your social status not about your ability to afford good health care but the fact that you're black skin you have a

possibility of having you know being you know facing disparity in health care from your nurse i mean if you're not really having all the money, all the fame, had certain disparities from a nurse, then it's possible that anyone else can also go through certain issues like that. And I think by today also, I'm going to be posting another artwork called Postpartum Depression, which from research,

one in eight mothers are likely to have postpartum depression. So I think after the call, I'm just going to make that as a public point, because I feel this is an area of medicine that people should talk about, you know, about mental health, about wellness, and about, you know, understanding the pain that mothers go through from childbirth. Yeah, I think both of those examples are getting to something that you briefly hinted at before, the fact that you're explicitly not investing time and resources in anatomical drawing per se, but more on symptoms and disease.

Can you explain that distinction and why it's important? Well, it's very much important because, you know, anatomy, for example, the pectoralis major, the trapezoid, I mean, it's still going to be the same anatomy, right, for years. And I don't think that's going to change in coming years. And look at it, you know, explicitly, like it hasn't really, really solved the global problem of disparity in healthcare. You know, for example, we talk about, you know, you know, the keys of disparity in healthcare are skin factor, right? Where skin has become the first basis for treatment for patients,

where patients are unseen, unheard. For example, if I was a black patient, I'm ill-treated by my doctor. It's not because my pectoralis major is prominent, right? It's because my skin color is black. So considering all of the factors, it is important to identify the problem which is key and work around that as a solution to solving the problem. Because, you know, looking at Frank Nater, which is the father of illustration, he has always created a lot of anatomy illustrations, you know, a lot. And I think that perpetuated stereotype in

some perspective because they were all white centered, you know. But if we're going to address the issue of disparity in healthcare or address the lack of, you know, visual representation in healthcare, we need to consider the skin as a first, you know, as a first basis for accurate representation, you know, in as much as, you know, I think for me, that's just my niche that I've decided to have created for myself to focus on signs and symptoms and, you know, skin conditions and the rest to hopefully use this measure to advocate for Black people or generally the minority group. And you often speak about increasing patient safety as a driving inspiration. Can you give an example?

Well, you know, ultimately, the essence of health care is to ensure that our patients are safe, right? Not just in terms of the patient-doctor relationship, but also safe enough to be able to talk about their personal issues to a doctor or to, you know, to a physician, because safety in general, you know, tend to cover a wide spectrum in terms of if a patient walk into the hospital, is he or she comfortable enough to talk about her symptoms or you know um with with the doctor and if yes right would the doctor be open enough or receptive enough to listen to the patient you know and all of these tend to affect patient safety because um you know talking about visual representation you know i mean several of the video you've talked about how black people have nerve endings are less sensitive to pain you know because of this myth in health care you know i mean several of the videos you've talked about how black people have nerve endings that are less sensitive to pain you know because of this myth in health care you know it's possible

that medical students who are trained assuming that the black patient have nerves that are less sensitive to pain basically so considering factors like that is important to know that this can affect patient safety right so in my in my opinion, I believe that, you know, integrating illustrations that cover a certain population can have a great outcome in that patient safety by eliminating the bias around healthcare, you know, in healthcare around a certain population. So I strongly believe that, you know, patient safety has a wide spectrum,

but ultimately it's focused on how patients feel or how they are seen in the healthcare space. Absolutely. And you're extremely focused on updating medical curriculums globally by creating and distributing images that show people with a range of skin tones. Can you talk about some of the textbook initiatives, maybe the nursing textbook curriculum that you're working on? Yeah. So currently I'm working on, I have a friend of mine, Nasi, we partnered on creating a nursing textbook for, you know, boarding nursing students. And she reached out to me and said that she realized in nursing school, most of our teaching resources were all wide center. And if you can collaborate to create more perspective in that regard. So hopefully by next year, the book will be out. But I would say regarding medical curricula, it is really difficult to reach out to

faculties and tell them this is something that has been missing and, you know, wanting them to make a change. It's really a big change. So what we do is that we begin to create these illustrations for them to see that there's a problem somewhere and when they see and understand, they begin to integrate in their curricula. And usually the issue with not being able to change that is because people have lacked access to these illustrations. So that's where Illustration Change came in, to give them access to these illustrations.

Personally, I'm working on my second book, and this is also to throw more light about the work that I do and hoping that it can also create reasons for integrating these in medical curricula. And I'm really happy that, one, you know, hoping that it can also create reasons for, you know, integrating these in medical curricula. And I'm really happy that, one, you spoke about resistance, the resistance that can occur. And then, two, about that the book is for nurses, right? It's not just for doctors. Recognizing the full spectrum of health care and how you can't just educate one specific specialty profession within the health care field, but it's understanding all of it. I think you mentioned that I talk about pain biases.

So many nurses will reach out to me and say that they saw inaccurate information about pain from different cultures in their nursing textbooks. And so that's how things get perpetuated. It's not just doctors, but it's all kind of specialties within there. You're also currently the lead medical director at Harvard's International Center for Genetic Disease and the chief medical illustrator and creative director for the Journal of Global Neurosurgery. Can you talk a little bit about the reach and scope of those projects and how has that worked different or maybe complementary

to the Illustrate Change initiative? Well, so for my position at Harvard, so what we did was that we had a couple of meetings and we decided to build a project called Meetup, which is a medical illustration and diversity program, which was similar to Illustrate Change, but this is just for the Harvard community where, you know, talking about medical curricula, where there was a need to review medical curricula, we decided to give them an opportunity to have access to this illustration so we are going to build digital library right for the Harvard community where you know lecturers, staffs could have access to the library and download free illustrations for educational purposes for their PowerPoint presentation and being a general global neurosurgery, you know, my workday is just to create illustrations

and to create, you know, digital assets for a social media campaign, for social media posts and, you know, being passionate about neurosurgery. But how it relates to Illustrate Change is that, you know, it's still a digital library, but for different uses, you know, one is for the Harvard community, one for general use.

And for Illustrate Change, I would say it's a continuous project, which we intend to build in the library with other illustration that are illustrators. I love that. That's amazing. So much incredible work. You've accomplished so much in just four years as a medical student, but you are just one person and you're still pretty unique in the field. I know one of your efforts has been to build a sustainable pipeline in the profession to ensure that representation becomes a conventional part of medical illustration in the future. Can you talk a little bit more about the Associated Medical Illustrators and especially the recent fellowship that was created to train more artists of color? Maybe some of the training that you're doing in

Zambia with your classmates. Well, I'm just going to start with the last one. For me, my philosophy, I would say, has been that leaders create more leaders than others' followers. So I decided to see, okay, how can I create more of people who are passionate about what I do, people who are willing to also contribute because sometimes I receive so many requests from people to create so many artworks, so

many illustrations, but there's just little I can do as a single person. But if I have team effort from people who are passionate about the same thing, who are working to bring inclusivity in healthcare, you know, through illustrations. It can really go a long way. So I started a training program in school. We started by training around 24 medical students who were non-artists. And it was really difficult, you know, training for non-artists and how to create illustrations. But the idea was that they were passionate about it, you know, so I had to collaborate with other artists to teach them.

Because I think it's also a great way to, you know, to promote Africa to the global stage and also to create more illustrators of my kind. And also the AMI community has been doing a great job by integrating diverse illustrators from different you know region to contribute to illustrating you know it's a collective effort from different illustrators who you know from different areas of the world who has come together and brought their expertise in building the library and these are all diverse communities and I think that is a great job and that is a good way of talking about inclusivity in healthcare so I would say ultimately my work is to produce more people, to raise more people, to encourage more people from a distance, I would say, because I had a couple

of times when people reached out to me, other illustrators who reached out to me and said that from now onwards all the artists are going to be black-centered, I mean, not white illustrators anymore. So that's to say to a certain degree, I've been able to impact people from a distance to collectively work synergistically to create more visibility in this regard. So I would say,

I think I'll give myself a bit of credit that I'm doing a good job. You're doing an incredible job. And just to give a quick example of that, literally last, this past weekend, I was in Austin, Texas at South by Southwest. Someone came up to me and they said, I've been following you for a few years. One of my favorite questions to ask people is what video is it that most stuck with you? And they immediately said, the video that stuck with me the most was the one in which you showed a black fetus with a black mother. And I think that video to this day is one of the best performing videos because it's so powerful. I've always said you can't be what you can't see.

And I think the work you're doing, the visual work you're doing in order to change healthcare is truly changing lives. And at the same time, it's also inspiring an entire generation. So Chidiaberry, I want to say thank you so much for being on this podcast. It's been a long time coming.

And I'm so thankful for the work you're doing and for the time you've given. Thank you so much. It's a pleasure having this call with you. Thank you. It's fantastic. This episode of The Dose was produced by Jody Becker,

Mickey Capper, and Bethann Fox. Special thanks to Barry Scholl for editing, Jen Wilson and Rose Wong for art and design, and Paul Frame for web support. Our theme music is Arizona Moon by Blue Dot Sessions. If you want to check us out online, visit thedose.show. There, you'll be able to learn more about today's episode and explore other resources. That's it for The Dose.

I'm Joel Brevelle, and thank you for listening.