Failing to account for the differences among patients, such as race, ethnicity, gender, sexual orientation, etc., can adversely affect diagnosis, treatment, and health outcomes. For clinicians to make the best possible care decisions for all their patients, they need guidance that is representative of the diverse patient populations they serve.
Recognizing a problem and working to solve it
From medical education to research, bias and lack of diversity have been a long-standing and pervasive problem in healthcare.
Anna Feldweg, MD, director of editorial management and deputy editor of Allergy/Immunology, and Kathryn Collins, MD, PhD, FACS, deputy editor of General Surgery, both for UpToDate, discuss why improving diversity and inclusivity in clinical content is critical for healthcare organizations, clinicians, and patients.
Generalizations can harm patients
As editors, we realize that when you read a clinical article or study, you're often reading it through the narrow lens of clinicians or researchers in one environment. You have to ask yourself, does this information still apply to other clinicians in other environments with a different patient population?
One example is the original Framingham Heart Study, population-based, observational cohort study to investigate the epidemiology and risk factors for cardiovascular disease. Many generalizations about cardiovascular care and health were initially based on this ongoing study of primarily White people from Massachusetts. Recognizing this, the study population was subsequently broadened to include a more diverse cohort.
“When article abstracts are written, they have a certain amount of information; however, that information may not be wholly representative of what is in the actual study. Our editors are effective at digging deeper into the information to find out what the clinical trial really studied.
“Transparency and being as specific as possible are key,” says Collins.
Dermatology, the medical specialty devoted to treating diseases of the skin, is an area where the lack of representation is well recognized. Without clinical content and images representative of various of skin tones, clinicians may find it difficult to detect common dermatological conditions or misdiagnose serious conditions, such as melanoma, in people of color.
“Representation is crucial to dermatology as skin tone differences impact the manifestation of skin diseases,” says Feldweg.
The Black Lives Matter (#BLM) movement and the coronavirus pandemic have further spotlighted this disparity. Though people of color have been affected disproportionately by the pandemic, Dr. Jenna Lester, director of the skin of color program at the University of California, San Francisco, reviewed 130 images of coronavirus skin disorders published in medical journals and found they were overwhelmingly of white people.
Is it a real risk factor or bias?
We also look at risk and outcome. When being part of a specific group is listed as a risk factor, we must re-evaluate whether it is more likely being used a surrogate for a socioeconomic, education, or health-access issue.
“For instance, one of our topics said that risk factors for contracting gonorrhea include being unmarried or being of minority ethnicity. Is there something about being unmarried or being a minority that somehow makes you physiologically more susceptible to gonorrhea? That seems unlikely,” says Feldweg.
We must be certain that something that is being attributed as a cause isn't a surrogate outcome. It’s about discerning whether a particular population’s real problem is they don't have money or access to care, not that they necessarily are African American, for example, as opposed to being a White American.
Empowering patients by inclusion
The current movement in medicine is to have patients more involved in their own care and actively share in decision-making. In the U.S., patients can now read everything that is written about them in their medical record. Along with this comes the need for greater transparency and consideration, as it doesn’t serve anyone to have language in the medical record that is off-putting or objectifying, which can erode the care alliance.
The goal for our patient-facing content is to create content in which patients can recognize themselves. We look for language that increases patient “agency”— essentially the belief that one has control over one’s own health.
“We want to avoid language that could make patients feel stigmatized, blamed, or labeled. For example, we refer to ‘people with diabetes’ rather than labeling them as diabetics. Another example is, rather than writing ‘morbidly obese’ in a patient’s record, state it in a way that’s not hurtful to the patient, such as class 3 obesity.
“It’s really about focusing on and treating the patient, not just the disease,” says Collins.
For information on racial and ethnic disparities in obstetric and gynecologic care and role of implicit biases, visit UpToDate.