Malone Mukwende, a 20-year-old medical student, took matters into his own hands when he recognized the gap in representation.
Since his very first day at St George’s, University of London, Malone Mukwende found himself asking the same question over and over again. "But what will it look like on darker skin?" the 20-year-old medical student wondered in every class as his professors taught his class about different illnesses and how their symptoms manifest on skin. "I noticed a lack of teaching about darker skin tones, and how certain symptoms appear differently in those who aren't white," Mukwende, who recently completed his second year of study in the medical program, told The Washington Post.
For everything from 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," he continued, "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."
Since there was an obvious absence of imagery to highlight the difference, Mukwende—who was born in Zimbabwe and now lives in London—decided to take matters into his own hands. He hatched a plan to close the gap in representation himself by publishing a handbook to help doctors spot symptoms on Black and brown skins.
Would you be able to identify jaundice on darker skin? Would you describe the colour of all healthy babies as “pink”? Is that accurate? We must be able to detect clinical signs & symptoms of complications in women and babies with black or dark skin too pic.twitter.com/wyeCodEYyR
— NSU Midwifery Society (@midwifery_nsu) June 8, 2020
Students were not instructed on the correct terminology to describe conditions that appear on darker skin and Mukwende suspected that most medical schools across the globe share a similar curriculum gap. "I knew something needed to be done to address the situation," he explained. "I wanted to create a universal tool." He took his concerns to staff at the university and Margot Turner—a senior lecturer in diversity and medical education—immediately got on board with his plan to bring more diversity into the curriculum.
After class I decided to google what we learned to see what images came up. I wasn’t surprised by what I found: a homogenous representation of the bullseye rash on white skin.
— LaShyra “Lash” Nolen (@LashNolen) October 8, 2019
It’s no wonder our professor didn’t have a good answer to answer my classmate’s question. 2/5 pic.twitter.com/Ty7URMg9dR
This left me with the following thoughts:
— LaShyra “Lash” Nolen (@LashNolen) October 8, 2019
1. If stage 1 Lyme disease is taught to be recognized as a rash on white skin, how are we supposed to diagnose Lyme disease in our darker skinned patients? Does this mean Lyme disease will progress to later stages in these patients? 4/5
2. How does this later detection contritubute to the disparities we see in healthcare and what can we do in #medEd to reduce these disparities and ensure students have the tools necessary to treat and diagnosis patients of all skin types equitably? 5/5#MedTwitter
— LaShyra “Lash” Nolen (@LashNolen) October 8, 2019
"Malone came to me and said, 'I'm not learning anything that could help my family at home.' I told him we can change this. We worked with Dr. Tamony and applied for a student-staff partnership grant," said Turner. Peter Tamony, a lecturer in clinical skills and the co-lead of a peer tutor program, had at that point already been working on ways to make the curriculum at the school more inclusive and 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?" Tamony added. Together, Mukwende and the lecturers came up with the idea for their book titled Mind the Gap: A Handbook of Clinical Signs in Black and Brown Skin.
Speaking of the name, Mukwende revealed he was inspired by the London metro system, where warning signs saying "mind the gap" alert passengers to be cautious while crossing the gap between the train and the station platform.
“But what will it look like on darker skin?”- A question I’ve often asked myself during my time at medical school
— Malone (@malone_mk) June 18, 2020
This constant cerebration led me to curate a handbook that presents clinical features on darker skin. I hope this resource shifts the culture of medical education. pic.twitter.com/Coh3RrAVW8
"'Mind the gap' is a warning sign to alert you of danger and if you don't do anything about it, there can be fatal consequences," he said. "Similarly, if we don't do anything about addressing the issue at hand, people will continue being misdiagnosed."
As soon as the grant was approved in December 2019, the team of three co-authors began putting together a list of conditions to put in the handbook. Their list included Kawasaki disease (which presents as an obvious red rash on white skin but isn't as conspicuous on darker skin tones), skin cancer, meningitis, jaundice, eczema, psoriasis, COVID-19, and many others.
On top of his rigorous course load, Mukwende spent hours each week researching for the book which will feature images of common clinical signs with descriptors and suggested language for health-care workers to learn and adopt. However, gathering photos for the manual has been a challenge, revealed Turner. This very scarcity reinforces the lack of medical resources pertinent to non-white 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," she said.
Mukwende hopes to combat this scarcity with a website he is currently building through which people can send in their own photos to be used as examples in the handbook. "The idea is to keep expanding the literature, not only in relation to the pictures but in relation to the language, as well," said Turner. Tamony explained that along with publishing Mind the Gap, they have also been working on diversity training for staff at the university. "Alongside the handbook, we have been reviewing our curriculum," he said. "As part of the project, our team delivered diversity training to our clinical skills peer tutors."
Side note on another skin tone issue: as a mum I am always reading medical information to try and understand what my little one are suffering from, often one of the symptoms is the skin turning ‘red’ or ‘pale’. My kids have very dark skin, their skin doesn’t change colour.
— Nyadol Nyuon 🐯 (@NyadolNyuon) April 25, 2019
Although Mind the Gap is not the first of its kind, the project stands out in that it aims to make the content dynamic, concise, and easily accessible. "We want it to be a resource that everybody around the globe can pick up and read," said Mukwende. "My hope is that the handbook will become a staple resource in medical settings around the world. I want it to empower medical professionals, so they feel more competent, and so patients can be confident that their doctors understand them." The handbook is nearly completed, and the authors are now trying to determine how best to disseminate the handbook, which will not be sold for profit.