The very first patient I met in the rheumatology clinic at SUNY Downstate heard I was applying to medical school and pulled me close to her, saying, “I want you to feel the swelling in my hands.” She took great care to ensure I palpated each joint and appreciated the warmth, erythema, and “boggy” feeling imparted by the inflammation. She explained her medical history and was very specific with her words when describing the rash that had manifested on her face decades earlier. “If just one doctor had recognized that the rash looked different on my dark skin, my diagnosis might have been made years sooner,” she said.
Unfortunately, delayed and missed diagnoses are not uncommon among patients of color with rheumatic and dermatologic diseases. Drivers of such delays are multifactorial and include limited access to medical care, lack of health insurance, and gaps in provider exposure to these conditions on patients with darker skin tones. Such delays are not benign. Immune-mediated conditions, such as psoriatic arthritis or plaque psoriasis, can cause irreversible skin and musculoskeletal system damage, leading to greater disability if left untreated.
Decades after this patient’s missed diagnosis, I sat in the classroom at my medical school. “Silvery scaly plaques” is still the common buzzword medical students learn when they are taught about the symptoms of psoriatic disease. Though a helpful memory hook for the sake of board exams, it does not reflect the way these complex disorders can often present on individuals with darker skin tones. On darker skin, plaques will often appear thickened, red-brown to almost purple in color. Consequently, those who were taught to look for red, silvery plaques may not land on the correct diagnosis.
When looking at the data, these missed diagnoses aren’t surprising. Studies have demonstrated that only 18 percent of images in dermatology textbooks show conditions on patients with darker skin tones. In addition, in a survey of rheumatology fellowships, 30 percent provided no training in cultural competency or health literacy; in dermatology, 75 percent of residency programs provided no lectures on skin of people of color. These systemic oversights ultimately lead health care providers to have less experience and feel less confident when diagnosing conditions in patients with darker skin tones. I’m grateful my medical school lectures highlighted many common conditions on a range of skin tones. Still, more work is desperately needed by all programs to empower their students and trainees to feel confident in providing equitable care to all patients.
From my first day as a medical student, I have had the immense honor of helping to establish and grow a patient navigator program at my school. The program launched across SUNY Downstate’s rheumatology and dermatology departments through a partnership with Determi-Nation. The program serves the surrounding Flatbush neighborhood of Central Brooklyn, a patient population that is predominantly African American and Caribbean American. The program pairs first- and second-year medical students with patients who need extra support in navigating the complexities of the medical system, including scheduling appointments, language translation, and prescription refill reminders. The navigators also screen patients for food insecurity, help obtain home health aides, and prevent delays in care by communicating their patients’ needs to the medical team.
It’s a privilege to work longitudinally with patients so early on as a medical student and help them overcome the barriers that stand in the way of finding stability in their diseases. It’s been an exercise in building trust and establishing a dynamic wherein they feel empowered in their own care and believe that someone within the system can advocate for their needs. Mistrust among patients is, unfortunately, common and stems from a long history of inequities in the medical system. Given the complex diseases many patients face, the navigators play a crucial role in re-establishing a patient’s faith in the system, just enough for them to maintain consistent care, especially among those who were previously “lost to follow-up.”
In addition to the measurable effects this program has had on our patients to date, it has equipped our student navigators with experiences and skills to deliver culturally competent and inclusive care. The very thing that brought me to SUNY Downstate for medical school was the profound sense of partnership I felt with the patients in the rheumatology clinic. Almost every patient offered to teach me about their disease through their stories and their own bodies. As navigators, we work with patients to support their needs and learn more about their chronic conditions, skin manifestations, and medication side effects from their real stories – something that textbooks could never offer.
Decades after my patient’s diagnosis was missed due to biased medical education, our system continues to fail patients of color by not providing adequate training on the presentation of many common conditions on different skin tones. Medical students today are diverse and aspire to become inclusive health care providers, capable of offering the highest quality care to all patients. Medical student-led patient navigator programs offer diverse, real-world education to students outside of the classroom. Other solutions include new educational materials designed specifically to showcase conditions on skin of color, like Beyond the Textbook. The resource is designed to educate health care providers on how psoriatic disease presents in people of color and how to navigate conversations with patients in a culturally inclusive way. These efforts are paving the way for additional collaboration between educators, administrators, providers, students, and patients to improve medical education and address disparities, so all patients receive the medical care they deserve.
Grace Shadid is a medical student.