Using more nuanced language that recognizes and respects cultural differences can help doctors communicate better with diverse populations. Photo: Getty Images. Click image to enlarge.

Medical and science journal authors, editors and peer reviewers may soon be prompted to update the way they report on race and ethnicity, based on new proposed guidance published in The Journal of the AMA.

Along with the AMA Manual of Style Committee, the editorial brass at JAMA laid out a series of wide-ranging suggestions, including the need for balanced, evidence-based discussions  to address institutional and structural racism that could affect the study population, disease or disorder under investigation, as well as relevant health care systems; the preference for specific racial and ethnic categories over collective terms; the avoidance of merging race and ethnicity as “race/ethnicity;” and the reporting of individuals’ self-identified countries of origin.

Inclusive language supports diversity and conveys respect, and language that imparts bias toward or against persons or groups based on characteristics or demographics must be avoided, the investigators suggest.

“This guidance continues to acknowledge that race and ethnicity are social constructs as well as the important sensitivities and controversies related to use of these terms and associated nomenclature in medical and health research, education and practice. Thus, for content published in medical journals, language and terminology must be accurate, clear and precise, and must reflect fairness, equity and consistency in use and reporting of race and ethnicity,” the authors wrote in their paper.

Language Usage Sets the Stage

It is very helpful to have a consensus on guidelines that health care professionals should use, says optometrist Ruth Shoge, Director of Diversity, Equity, Inclusion and Belonging and an associate clinical professor at the UC Berkeley School of Optometry.

“The correct use of terminology when referring to an individual or group of people can really set the tone, so it’s important that we get it right. For example, using the term African American was seen as the politically correct way to describe Black people in this country until the conversation was recently reintroduced,” Dr. Shoge explains.

This topic of how to correctly address race and ethnicity in journals has come up in several recent conversations, Dr. Shoge says, so the suggested guidelines are helpful. 

“People want to make sure they are being sensitive and appropriate when naming and addressing individuals. We don’t want to mischaracterize or misrepresent somebody by arbitrarily putting a label on them. I think we’ve been doing that unsuccessfully,” Dr. Shoge says. 

She adds, “What the article really explains is how we can better understand disparity, and not so much that race is attached to the essence of a person. We need to better understand the use of race as a descriptor so we can better understand racism, and that’s a main point I took from the article.”

“When we get to that level of really understanding people in communities, then this idea of disease processes by race gets a little more nuanced,” she says. 

Case in point: optometrist Darryl Glover, who is a cofounder of Black Eyecare Perspective, recently welcomed a second child, and on the hospital intake form, the question about race and ethnicity for Black individuals only offered two options, Black or African American. On the other hand, Hispanic and Asian patients had much broader options.

Likewise, studies shouldn’t use generalized terms for Black patients, Dr. Glover says.  

“Black people aren’t all the same. They have different backgrounds. When you include ethnicity, diet and culture, there should also be an option for the Black community as well. It can’t be just one checkbox,” he says.

Dr. Glover adds, “We need to have the right reporting and the right language, because it impacts how we practice as eye care professionals and health care professionals. If there are no guidelines stating what information needs to be put out there, it is going to impact how we prescribe.”

He suggests there needs to be equity in research, and studies must take into account that everyone has different genetics and resides in different geographic locations.

“We have to be able to compare apples to apples, so if a doctor is talking to a patient and referring to the literature, we want to make sure that whatever we are quoting aligns to who the patient is, and who they are as a person. If that information isn’t documented in the report, then you can’t provide the ultimate patient care,” Dr. Glover says.

Dr. Glover believes studies should also factor in US Census demographic figures in addition to the local demographic information where the investigation was conducted. For example, the Black population in the United States is approximately 13.24%, but a study might have enrolled only 2% of Black patients.

In health care, the words used to describe a particular patient should also be considered, as medical slang can sometimes come across as offensive, says optometrist Essence Johnson, a community and correctional health optometrist at a hospital in Dallas, Texas, and chief visionary officer of Black Eyecare Perspective.

For example, Dr. Johnson lectures frequently, and a common topic she discusses is diabetes. Her hospital’s education manager stresses not to refer to these individuals as “diabetics,” as this term can dehumanize and objectify them, Dr. Johnson says. Instead of “diabetic,” the preferred term is a “patient with diabetes.” This same approach should be followed when it comes to discussing race, Dr. Johnson explains.

Key recommendations from the updated guidance: When reporting the results of research that includes racial and ethnic disparities and inequities, authors are encouraged to provide a balanced, evidence-based discussion of the implications of the findings for addressing institutional racism and structural racism, as these affect the study population, disease or disorder and relevant health care systems. For example, the Introduction and Discussion sections of manuscripts could include implications of historical injustices when describing the differences observed by race and ethnicity. Aggregate demographic information such as age, sex, race and ethnicity and socioeconomic indicators should be reported along with all prespecified outcomes. Considering the collection and reporting of demographic data on race and ethnicity, the Methods section should include an explanation of who identified participant race and ethnicity and the source of the classifications. If race and ethnicity categories were collected for a study, the reasons that these were assessed also should be described in the Methods section. If collection of data on race and ethnicity was required by the funding agency, this should be noted. Specific racial and ethnic categories are preferred over collective terms, when possible. Categories included in groups labeled as “other” should be defined. Race and ethnicity categories of the study population should be reported in the Result section. When collective terms are used, merging of race and ethnicity as “race/ethnicity” is no longer recommended. Instead, “race and ethnicity” is preferred, with the understanding that there are numerous subcategories within these two areas. The general term “minorities” should not be used when describing groups or populations because it is overly vague and implies a hierarchy among groups. Instead, include a modifier when using the word “minority” and do not use the term as a standalone noun for racial and ethnic minority groups and individuals. However, even this umbrella term may not be appropriate in some settings. The nonspecific group label “other” for categorizing race and ethnicity is uninformative and may be considered pejorative. Authors are encouraged to provide greater detail about the distribution of multiple racial and ethnic categories if known. In general, the term mixed race may carry negative connotations and should be avoided, unless it was specifically used in data collection. In this case, the term should be defined, if possible. To the extent possible, the specific type of multiracial and multiethnic groups should be delineated. The names of races, ethnicities and tribes should be capitalized. Racial and ethnic terms should not be used in noun form. Instead, the adjectival form is preferred. The terms “African-American” and “Black” may be used to describe participants in studies involving populations in the United States, following how such information was recorded or collected for the study. However, the two terms should not be used interchangeably unless both terms were formally used in the study, and the terms should be used consistently within a specific article. Reporting of individuals’ self-identified countries of origin is preferred when known. The more specific, the better.

Race Considerations for Diagnosis

One area to contemplate is why health care practitioners must consider a patient’s race, suggests San Diego optometrist Brian Chou. Namely for eye care, it can help the doctor best serve the patient, he says.

“If the patient is of Scandinavian descent with elevated IOP, I will have a heightened sensitivity to look for pseudoexfoliation,” Dr. Chou explains. “If the patient is Black and shows retinal hemorrhages, I may suspect sickle cell anemia. If the patient is Vietnamese and a high hyperope, I will look for anatomically narrow angles. If a patient is a Chinese-American child with myopia, I expect the parents may have anxiety about their child’s myopic progression.”

  The majority of health care professionals should recognize the value of the patient’s race in aiding diagnosis, yet this may not be as obvious to patients, Dr. Chou adds.

“With today’s polarization of media, some patients may feel that use of race in diagnosis is discriminatory in some way and get emotionally triggered to construe the inadvertent use of disfavored terminology—for example, ‘Oriental’ instead of ‘Asian’— as a microaggression,” Dr. Chou says. “My hope is that cooler heads and common sense will prevail.”

While a patient’s race or ethnicity can aid in the diagnosis of certain conditions, this thought process shouldn’t be adopted as a blanket approach, Dr. Glover suggests.

“We have to make sure that we eliminate stereotypes and biases when we think of someone’s race and ethnicity and not just consider homogeneous backgrounds as we have in the past,” he says. Instead, health care professionals should take a more holistic approach to patient care, and race and ethnicity are just one part of that equation.

Dr. Johnson believes race and ethnicity should play a part in a patient’s diagnosis, but with a caveat.

As a community and correctional health optometrist, Dr. Johnson has daily interactions with high minority, low socioeconomic groups, in addition to her medical professional colleagues at the hospital. 

Sometimes, doctors will treat or mistreat a patient because of their race and ethnicity, she adds. For example, a physician may make assumptions in the treatment and management of an overweight African American patient rather than basing their decisions on fact.

On the converse side, her hospital conducted a community health needs assessment that looked at health care disparities based on zip codes. The report found that in her area, there was a high prevalence of diabetes, hypertension and breast cancer, especially in areas with higher rates of low socioeconomic and high minority populations (African American and Hispanics), prompting further need for researching and reporting.

“When we are making care or generalizations or treatment plans or introducing new ways of doing things, it is normally specific to the majority population or demographics, without getting a baseline or data from minority populations,” Dr. Johnson says.

Her hospital places a focus on minority communities to see what other factors may be at play, whether it’s race and ethnicity, location, environment or nature vs. nurture.

“There are other contributing factors making certain groups more marginalized than others,” Dr. Johnson says.

Inequities in Health Care

The editorial also suggests that health inequities should be addressed among populations in medical journals, but this approach is also relevant in optometric practice, Dr. Glover says.

“I’m a Black optometrist, an African-American optometrist, and if a Black patient comes to see me, I am aware of inequities, because I am part of the community, and I understand,” Dr. Glover says.

If these patients visit a different eye care professional from a different background, these doctors might not be aware of this and may prescribe something they think will work based on old historic data that truly doesn’t assess the community well, and this can impact the doctor-patient relationship, Dr. Glover says.

“It’s very important to have education and awareness around this, but it also needs to be documented in the data to help when we are having these conversations with our patients and quoting research journals,” he adds.

Moving Forward

Dr. Glover believes the suggestions in the editorial are a good start, but this guidance needs to be continuously evolving and should be reassessed on an annual basis, at the minimum, since the demographics in the United States are constantly changing, he notes.

“We need to make sure that we are really looking at this from a holistic perspective and incorporating all the different backgrounds and addressing them in the literature, so we are communicating correctly with the patients, and we can align the appropriate treatment with exactly who that person is, and my colleagues who may have different backgrounds and settings will be able to do the same thing and truly give that patient the ultimate care,” Dr. Glover says.

Dr. Johnson adds, “I think when it comes to anything that is race-related, we always have to look at it with the lens, ‘Will there ever be an endpoint?’ I think it’s a great idea to look at our grammatics and syntax in how we use and report information, and to pay attention to the power that words hold and have,” Dr. Johnson says.

“I don’t do my job without at some point considering someone’s gender, age, race and ethnicity and geographic location,” Dr. Johnson continues. “I think all those pieces and tools make us able to treat a patient holistically. I think in the industry we are in, it is a category that we have, whether it’s socially constructed or not. It does have meaning and weight in the work we do. We know, at least scientifically, there are certain conditions that are more prevalent in certain groups, so we need those categories and buckets, but I do think we can standardize on how we report on these groups.”

Flanagin A, Frey T, Christiansen SL. Updated guidance on the reporting of race and ethnicity in medical and science journals. JAMA. 2021;326(7):621-7.