Whether a rash, a bruise, blue lips or other common physical reactions, “it was clear to me that certain symptoms would not present the same on my own skin,” said Mukwende, who was born in Zimbabwe and now lives in London. “I knew that this would be a problem for patients of a similar skin tone to mine, or of a darker skin tone in general.”
Not only was there an absence of imagery to highlight the difference, but students were not instructed on the correct terminology to describe conditions that appear on darker skin, Mukwende said.
He hatched a plan.
“I knew something needed to be done to address the situation,” said Mukwende, who added that he suspects most medical schools worldwide share a similar curriculum gap. “I wanted to create a universal tool.”
Mukwende began brainstorming ideas and consulted with staff at the university about his concerns. Margot Turner, a senior lecturer in diversity and medical education, immediately got onboard.
“Malone came to me and said, ‘I’m not learning anything that could help my family at home,’ ” said Turner, who is responsible for infusing diversity into the curriculum. “I told him we can change this. We worked with Dr. Tamony and applied for a student-staff partnership grant.”
Peter Tamony, a lecturer in clinical skills and the co-lead of a peer tutor program, had already been working for more than a year on making the curriculum at the medical school more inclusive.
As a doctor and educator, Tamony said he thought Mukwende’s project was critical: “Our methods of teaching were unfairly disadvantaging and ‘othering’ students from black and minority ethnic groups,” he said. “The other issue is one of patient safety. Are we adequately training our students to be competent health-care professionals who can detect important clinical signs in all patient groups?”
With Mukwende at the helm, he and the lecturers came up with the idea to write a book called “Mind the Gap: A Handbook of Clinical Signs in Black and Brown Skin.”
Mukwende’s inspiration for the name of the handbook came from the London metro system, where warning signs saying “mind the gap” are used to alert passengers to take caution while crossing the gap between the train and the station platform.
“ ‘Mind the gap’ is a warning sign to alert you of a danger and if you don’t do anything about it, there can be fatal consequences,” said Mukwende. “Similarly, if we don’t do anything about addressing the issue at hand, people will continue being misdiagnosed.”
Once the grant was approved in December 2019, the team of three co-authors began compiling a number of conditions to put in the handbook, including Kawasaki disease — which presents in an obvious red rash on white skin, but is far less conspicuous on darker skin tones — as well as skin cancer, meningitis, jaundice, eczema, psoriasis and even covid-19, among other conditions.
Mukwende spent hours each week researching for the book, he said, on top of his rigorous course load.
The manual will feature images of common clinical signs, along with descriptors and suggested language for health-care workers to learn and adopt.
“It’s really about the words we use,” said Turner. “We are looking to decolonize the curriculum and make sure the medical education is reflective of everyone.”
Gathering photos has been a challenge, she said, which further reinforces the lack of medical resources pertinent to nonwhite patients.
“We’ve been approached by the British Association of Dermatologists and the NHS (National Health Service) digital services, because they too find it difficult to get pictures,” Turner said.
Mukwende is constructing a website to address this scarcity, with the goal of encouraging people to send in their own photos to be used as examples in the handbook.
In fact, the ultimate plan for the manual is to make it a “live document,” whereby clinicians, medical students and patients can actively contribute their own images and descriptions.
“The idea is to keep expanding the literature, not only in relation to the pictures, but in relation to the language, as well,” Turner said.
Others in the medical community have vouched for the importance of the project.
Minal Singh, the curriculum director at the School of Medical Sciences at the University of Manchester, and the chair of medical student education at the British Association of Dermatologists, commended Mukwende and the issues he has highlighted.
“I think that the role of medical education is to teach across all types of diversity,” she said. “Whether you’re talking about race, sexuality or social inequality, medical education must teach all varieties and backgrounds.”
“Malone has identified an absolute need,” Singh continued. “It’s not so much just the visual pictures that are important, it’s understanding the story the patient has told.”
Tamony agrees. That’s why part of the project includes diversity training for staff at the university.
“Alongside the handbook, we have been reviewing our curriculum,” Tamony said. “As part of the project, our team delivered diversity training to our clinical skills peer tutors.”
Patricia Louie, an incoming assistant professor at the University of Washington, who co-authored a paper in the National Library of Medicine on the representation of race and skin tone in medical textbook imagery, has done extensive research on the subject.
“We found that medical textbooks overrepresented light skin tones and underrepresented dark skin tones,” said Louie, adding that nearly 75 percent of the images found in widely used medical literature showcase light skin tones, while fewer than 5 percent feature dark skin tones.
Likewise, her research demonstrated that the majority of textbooks used in South Africa’s top medical schools also feature mostly white bodies and light skin tones, despite the fact that the population is predominantly black.
Beyond incorporating more diverse imagery in the medical curriculum, “it is pertinent that doctors understand the role that structural racism plays in producing these disparities in the first place,” Louie said.
“Mind the Gap” is not the first of its kind, as similar texts have been written in the past. But the goal of this particular project is to make the content dynamic, concise and, above all, easily accessible.
“We want it to be a resource that everybody around the globe can pick up and read,” Mukwende said.
The project, which is supported by St George’s, is nearly completed, and the authors are determining how best to disseminate the handbook, which will not be sold for profit.
“This has taken off way beyond our expectations,” said Turner, who said people have already started asking for copies.
“We hope that this project results in lasting change to clinical training across universities and is just the start of similar initiatives by ourselves and other institutions, to level the playing field when it comes to equitable health care,” said Jane Saffell, deputy principal for education at St George’s.
Mukwende said the coronavirus pandemic — which has disproportionately impacted people of color — coupled with the global reckoning on race, has made his project more critical than ever. People are demanding change, he said, as evidenced by a recent petition with thousands of signatures, calling for medical schools to include BAME (black, Asian and minority ethnic) representation in clinical teaching.
“My hope is that the handbook will become a staple resource in medical settings around the world,” said Mukwende. “I want it to empower medical professionals, so they feel more competent, and so patients can be confident that their doctors understand them.”
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