Medicine is not exempt from the explicit and implicit racism seen in other parts of American life.
When Deirdra Terrell, PhD, MPH, started attending the American Society of Hematology (ASH) Annual Meeting in 2001, there were almost no Black people, she recalled.
“I remember talking to Dr. [James] George, whom I work with, and asking, ‘Where are all the Black people?’” said Dr. Terrell, an Associate Professor of Epidemiology at the University of Oklahoma Health Sciences Center. “The way ASH looks now is not how it looked then. I am not kidding when I say it was very male and very white. There was not a lot of diversity.”
Shortly after, in 2003, ASH formed its Committee on Promoting Diversity – of which Dr. Terrell is the current Vice Chair – and started the Minority Recruitment Initiative (MRI), which is dedicated to increasing the participation of underrepresented minorities in hematology-related fields.
ASH President Stephanie Lee, MD, MPH, recently released a message on diversity, equity, and inclusion stating, “While we are proud of our efforts so far, we can and must do more. … We see and acknowledge the personal pain that systemic racism causes to many ASH members and the populations we serve.”1
This message was prompted in part by the events of May 25, when George Floyd was killed while in police custody in Minneapolis, igniting protests and demonstrations in cities across the U.S. and throughout the world. Months later, protests continue.
This renewed awareness about racial injustice embedded in society has led to changes in the entertainment industry, consumer products, and professional sports. It has resulted in changes to state flags and the removal of monuments and statues.
Is it changing the American health-care system, too? ASH Clinical News spoke with Dr. Terrell and other clinicians and researchers of color about their experiences in medicine and recent efforts to address racism in health care.
Bias, Explicit & Implicit
“The biggest issue for a long time that has gone underrecognized, and which is now coming to the forefront, is the pervasive implicit bias that all of us have,” said Rayne H. Rouce, MD, a member of the ASH Committee on Promoting Diversity and the Vice Chair of the MRI Programs Subcommittee, as well as Assistant Professor and Associate Director of Community Engagement in the Office of Diversity at Baylor College of Medicine in Houston. “All health-care workers – doctors or otherwise – have unconscious or implicit bias that strongly influences how we approach, manage, and care for our patients.”
Explicit racism is more easily recognized and avoided, she said. Implicit bias – the social stereotypes about certain groups of people that individuals form outside their own conscious awareness – often manifests in preconceived notions of why patients seek treatment, how they might react to treatment, and whether they will be adherent to care recommendations.
“Several studies have shown that when presented with a Black patient and a white patient with the same clinical history, physicians-in-training or even seasoned physicians will recommend different treatment options because of certain assumptions about each patient,” Dr. Rouce said.
One example of these assumptions is how Black patients experience pain. A study published only 4 years ago found that a substantial number of white medical students and residents held false beliefs that Black people had certain biologic differences from white people.2 Some of these beliefs included that Black patients age more slowly than white patients, have thicker skin, and have nerve endings that are less sensitive. Together, these misconceptions were associated with racial bias in the accuracy of pain treatment recommendations, leading to the systematic undertreatment of Black Americans with analgesics.
The Stigma of Sickle Cell Disease
Racial biases manifest clearly in hematology in the treatment of patients with sickle cell disease (SCD), which predominantly affects Black Americans.
“Something that stood out to me in my research of SCD is the mistrust of the medical profession,” said Gilda A. Barabino, PhD, President of Olin College of Engineering, who has spent her career applying engineering principles to problems in medicine. Dr. Barabino served as a member of the ASH Committee on Promoting Diversity, is a current member of the Awards Committee, and a recipient of the Presidential Award for Excellence in Science, Mathematics and Engineering Mentoring.
“Specifically, there is a stigma associated with SCD that has roots in racism and racist attitudes,” Dr. Barabino said. “This includes a lack of compassion and cultural sensitivity from medical providers that could damage the relationships between providers and individuals seeking care.”
In fact, in a study of 52 adults with SCD who received their care from a university-affiliated comprehensive sickle cell clinic, 48 of whom were Black, perceived injustice in how they were treated by doctors and nurses was a significant predictor of patients’ stress and pain levels.3
Another study found that providers with negative attitudes toward patients with SCD had lower adherence to national guidelines about the use of opioids for disease-related acute pain episodes.4 highest quartile of negative attitudes were 20% less likely to re-dose opioids within 30 minutes for inadequate analgesia.
“Because this is a disease that affects predominantly African-American patients, the patients are aware of biases that practitioners have toward them,” Dr. Rouce said. “What this means is that – especially when transitioning from pediatric to adult care – if a patient who goes to a physician or an emergency room and feels like he or she is not being believed, that patient becomes more likely to stay at home and not present for treatment, even when having more serious complications like a stroke.”
Diversifying Clinical Trials
Implicit bias is pervasive throughout clinical practice, according to Dr. Rouce, and also factors into research.
“There is a very strong preconception that racial minorities are less likely to participate in clinical trials,” Dr. Rouce said.
This bias means that some researchers or physician-scientists may not even approach certain people for research opportunities, explained Dr. Terrell, who has devoted much of her career to researching health disparities and patients with platelet disorders. “Instead of approaching everyone, they make a predetermined consideration. Because of that, we do not see diversity in clinical trials.”
A 2018 study found two tendencies apparent in oncologic studies specifically.5 First, 48% of basic research studies collected no information about the race/ethnicity of individuals who donated specimens, and 67% of clinical trials included no racial/ethnic registries. Second, white patients were overrepresented. The most glaring example: Among 416 cancer-related genome-wide association studies, including more than 6.3 million samples, 92% of samples were from people of European descent.
This trend means that the safety and effectiveness of investigational drugs are tested in only a small portion of the population that will eventually use the approved drug. In 2019, of the total number of patients that participated in trials that led to approvals for drugs for hematologic conditions, 25% were Black or African American; in oncology, only 4% of patients were Black or African American.6
Even in the trials for COVID-19 vaccines, participants are predominantly white, Dr. Terrell pointed out. Although it is estimated that more than one-half of COVID-19 cases in the U.S. have been in people who are Black or Latinx, only about 10% of trial participants are Black or Latinx.7
“What will that mean when we finally have a vaccine?” she asked.
Hesitation about participation in clinical research is partly cultural, according to Dr. Rouce, with a basis in historical mistreatment of Black people in research, typified by the infamous Tuskegee Syphilis Study. Starting in 1932, the U.S. Public Health Service misled hundreds of Black men for 4 decades by allowing them to go untreated so that the disease’s progress could be studied – even after penicillin became a standard treatment.8
Despite the perception that minority patients mistrust clinical research, studies have shown that Black and Latinx patients are willing to participate in research when a culturally sensitive approach to enrollment is used.11
“When a patient says they are not interested [in clinical trial participation], some physicians cannot understand why. They think it may be because they have low intelligence and don’t understand trials,” Dr. Rouce said. “I have had to advocate for patients, revisit clinical trial participation with them, explain the rigorous processes for testing therapies in humans, and then explain the safeguards in place.”
She added that concerns about trial participation also vary by culture or ethnicity. For example, some of her Latinx patients have declined to enroll in clinical trials because they are concerned about their immigration status; they worry that, if they sign up for a trial, their personal information will be reported to the government and will adversely affect their family.
“We need to spend time talking with minority patients to learn what their concerns are,” Dr. Terrell said. “Researchers may not be willing to put in that kind of time, but if they don’t, we run the risk of not having diversity in research and not having generalizable results.”
Many institutions recognize the lack of diversity in trial enrollment and are trying to correct the imbalances, according to Leon Bernal-Mizrachi, MD, Associate Professor at Emory University School of Medicine in Atlanta, Chief of Hematology and Medical Oncology at Grady Health Systems, and current member of the ASH Committee on Promoting Diversity.
“We started working through partner hospitals to increase community participation in clinical trials,” Dr. Bernal-Mizrachi said. “It has been a slow process and has required building a lot of trust with the community, but after about 2 years, we now have many more minority patients eager to participate in clinical trials.”
Bias in the Workforce
Racism and implicit bias not only affect patients in the health-care system, but also shape and inform the experiences of Blacks and other minorities who pursue medicine as a career.
“Unfortunately, even in 2020, most African-American and Hispanic people do not even have the option of choosing a doctor who looks like them – especially in more subspecialized fields,” Dr. Rouce said.
Although Black people are estimated to represent 14% of the U.S. population, they make up only 4% of the physician workforce.12 Similarly, Latinx people constitute 17% of the population, but only 4% of the physician workforce. Strides have been made in recruiting more minority students to medical schools: During the 20-year period from 1997 to 2017, the number of students at U.S. medical schools from underrepresented racial and ethnic groups in medicine increased by 30%. However, because overall matriculation increased by more than 50%, the proportion that these minority enrollees represented actually decreased from 15% to 13%.
Data from 2016 indicated that only 2.3% of practicing oncologists self-identified as Black or African-American and 5.8% self-identified as Hispanic.13 It also is unlikely that underrepresented minorities will encounter people from their own ethnic groups with expertise in a highly specialized field like hematology, given that only 5.5% of medical school faculty identified as Hispanic, Latino, or of Spanish origin and 3.6% identified as Black or African American in 2010.14
“ASH has done a great job with trying to enhance underrepresented minority physician recruitment, but still, at any given institution, if there are 40 hematology/oncology doctors, maybe two are African American or Hispanic,” Dr. Rouce said.
The Root of the Problem
This isolation or marginalization often starts as soon as minority students begin medical training.
“I have learned by participating in the ASH Ambassador program that there are certain universities that have never had a minority on program – ever,” Dr. Bernal-Mizrachi said. “That should tell you that there are still doors shut for many of these populations.” (See SIDEBAR for information about the program.)
When Dr. Rouce began her medical school training at the University of Texas Medical Branch, she recalled being one of seven or eight Black people in a class of 200.
“As a person of color, you certainly have a different experience going through medical training, especially when you are training in a system that has implicit biases toward patients and also some toward physicians and nurses,” Dr. Rouce said. “Unfortunately, I’ve experienced overt racism throughout my training from patients and providers.”
When Dr. Barabino began her graduate school training at Rice University in Houston, Texas, she was the first Black student ever admitted to the chemical engineering program.
“That comes with challenges. As you climb up the ranks, there is increased pressure to succeed because you are viewed as representing your race,” she said. “If you don’t do well, it may be less likely for another person coming behind you with a similar background to gain admission.”
Even once candidates from underrepresented populations gain admittance to medical school programs, there is a “filtering” that happens, according to Dr. Bernal-Mizrachi, when minority students exit the medical career pipeline.
“This occurs from medical school all the way to fellowship,” he said. “We have to work to not only provide more access to the system, but to nurture these students when they are there.”
One area where Dr. Terrell is advocating for change is in the admissions process for graduate programs. Some schools have experimented with test-optional policies that remove standardized testing requirements from the admissions process. Instead, the schools take a more holistic view of the applicant, beyond grades and scores on tests that may be biased against minority and low-income students.
“First-generation college graduates may have worse grades in their first couple of years when they are trying to adjust,” Dr. Terrell explained. “People dismiss these candidates. I try to speak up and say, ‘But look, they figured it out by their junior year.’”
Individual circumstances also need to be considered, she added – for example, comparing the GPA of someone who is a full-time student with that of a person who is a student and holds down a full-time job.
“You need to speak up for those people who may not have a voice at the table,” Dr. Terrell said.
For students in underrepresented groups, completion of training comes with a new set of barriers, such as lack of mentorship and delayed promotion.
A 2016 analysis found that, while U.S. medical school faculty became markedly more diverse between 1966 and 2015, lower-rank faculty remained more diverse than higher-rank faculty for the entire time period.15 Of note, the proportion of faculty from underrepresented populations correlated positively with the proportion of incoming minority students. Another study found that underrepresented minority faculty members (including Black, Mexican American, Puerto Rican, Native American, and Native Alaskan individuals) were promoted at lower rates compared with white faculty, even after adjustment for sex, tenure status, degree, department, medical school type, and receipt of National Institutes of Health (NIH) awards.16 A 2011 study, for example, found that applicants who self-identified as African American were 10 percentage points less likely to receive NIH investigator-initiated research funding compared with white applicants – even after controlling for the applicant’s educational background, country of origin, training, previous research awards, publication record, and employer characteristics.17
A lack of underrepresented populations in faculty leadership results in a lack of mentors with shared experiences.
“Having multiple mentors who don’t necessarily share the same background can be helpful,” Dr. Barabino said. “However, when there is commonality in backgrounds, special benefit can be derived from being able to connect around shared characteristics and shared experiences. Part of the benefit of having those around you who have had similar experiences is in how you get socialized into the profession. They can help you navigate your career path in ways that others might not be able to.”
Even as a Black doctor or researcher gains success and climbs the ladder, there is often an extra burden placed on anyone who breaks a barrier or is the “first.”
“Particularly in academic situations, there is an extra ‘tax’ placed on people of color who are solo or one of only a few to carry the load of educating everyone around them about diversity, to provide representation on committees, or to lead efforts to reach out to the broader community on behalf of the institution,” Dr. Barabino said. “They are dealing with isolation and marginalization and the burden of disproportionate service.”
Promotion through academic ranks does not necessarily alleviate the sense of isolation for people of color. Race, and how it shapes the experiences of patients and colleagues, often goes unrecognized.
“[Black people] are still expected to come to work and meet deadlines with no recognition of how current events might be affecting us,” Dr. Terrell said. “To see George Floyd killed and be on a conference call the next morning where no one says anything about it is difficult. It makes you feel marginalized.”
Advocating for Social Change
Slowly, the medical education and health-care systems are acknowledging the burden of racism and implicit bias.
Recent events were a long overdue wake-up call, according to Tamara Dunn, MD, Clinical Assistant Professor and Hematology Fellowship Director at Stanford University School of Medicine. Dr. Dunn also is a participant in the ASH Ambassador program.
“We still have a long way to go, but I feel that we are looking more openly at our policies and procedures through the context of racial injustice and structural racism,” Dr. Dunn said. “People are realizing that sitting down for one implicit bias training is not enough. There is a lot to learn and that learning is profound and ongoing.”
Dr. Rouce shared Dr. Dunn’s enthusiasm. “I am overjoyed,” Dr. Rouce said. “This is the first time I have heard people in leadership positions across the board taking a stand and recognizing that systemic racism exists – not only in the local community and the world, but inside medicine and health care.”
Baylor University has initiated several workshops on implicit biases and is working to make this type of training mandatory, Dr. Rouce said. In addition, the school is starting an anti-racism teaching series that will provide a safe space for practicing communication techniques.
“I finally feel like I am not the person who always has to speak up about these things,” Dr. Rouce said.
Drs. Rouce and Terrell both acknowledge that tangible change will not happen overnight.
“Unfortunately, there are a lot of people who think they are liberal in their thinking, but still subscribe to racist beliefs,” Dr. Terrell said. “For people to truly acknowledge and address racism at the root is going to require a lot of uncomfortable conversations. It will take people standing up and saying, ‘What you said is racist.’”
Important steps are being taken. Recognizing that systemic racism exists helps the system to move forward, Dr. Rouce added.
“In that recognition, I strongly suggest that people don’t say things like, ‘I don’t see color’ and move on,” she said. “Everyone needs to start actually thinking about what that statement means and how that statement is interpreted by people of color. If you ‘don’t see color,’ you are not recognizing the problems within the health-care system related to race, and you can’t be a part of the change.” —By Leah Lawrence
- American Society of Hematology. Message from the ASH President on Diversity, Equity, and Inclusion. Accessed September 2, 2020, from https://www.hematology.org/newsroom/press-releases/2020/message-from-the-ash-president-on-diversity-equity-and-inclusion.
- Hoffman KM, Trawalter S, Axt JR, Oliver MN. Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proc Natl Acad Sci U S A. 2016;113:4296-4301.
- Ezenwa MO, Molokie RE, Wilkie DJ, et al. Perceived injustice predicts stress and pain in adults with sickle cell disease. Pain Manag Nurs. 2015;16:294-306.
- Glassberg JA, Tanabe P, Chow A, et al. Emergency provider analgesic practices and attitudes toward patients with sickle cell disease. Ann Emerg Med. 2013;62:293-302.e10.
- Guerrero S, López-Cortés A, Indacochea A, et al. Analysis of racial/ethnic representation in select basic and applied cancer research studies. Scientific Reports. 2018;8:13978.
- U.S. Food & Drug Administration. 2019 Drug Trials Snapshots Summary Report. Accessed September 3, 2020, from https://www.fda.gov/media/135337/download.
- Centers for Disease Control and Prevention. U.S. Public Health Services Syphilis Study at Tuskegee. Accessed September 3, 2020, from https://www.cdc.gov/tuskegee/timeline.htm.
- Henrietta Lacks: science must right a historical wrong. Nature. 2020;585:7.
- Katz RV, Green BL, Kressin NR, et al. Willingness of minorities to participate in biomedical studies: confirmatory findings from a follow-up study using the Tuskegee Legacy Project Questionnaire. J Natl Med Assoc. 2007;99:1052-1060.
- Talamantes E, Henderson MC, Fancher TL, Mullan F. Closing the gap – making medical school admissions more equitable. N Engl J Med. 2019;380:803-805.
- ASCO. Facts & Figures: Diversity in Oncology. Accessed September 3, 2020, from https://www.asco.org/practice-policy/cancer-care-initiatives/diversity-oncology-initiative/facts-figures-diversity.
- Association of American Medical Colleges. Faculty Diversity in U.S. Medical Schools: Progress and Gaps Coexist. Accessed September 9, 2020, from https://www.aamc.org/system/files/reports/1/december2016facultydiversityinu.s.medicalschoolsprogressandgaps.pdf.
- Fang D, Moy E, Colburn L, Hurley J. Racial and ethnic disparities in faculty promotion in academic medicine. JAMA. 2000;284:1085-1092.
- Ginther DK, Schaffer WT, Schnell J, et al. Race, Ethnicity, and NIH Research Awards. Science. 2011;333:1015-1019.
The American Society of Hematology is committed to building and nurturing a global hematology community and workforce inclusive of diverse perspectives, talents, and experiences through several programs.
The ASH Sickle Cell Disease Initiative is a multifaceted, patient-centric initiative to improve outcomes for individuals with SCD brings together stakeholders in the public and private sectors committed to significantly improving the state of SCD worldwide. Explore ASH’s SCD priorities and discover the steps the Society has taken to make a significant difference in access to care and research at hematology.org/scd.
The ASH Ambassador program supports recruitment and retention of trainees to hematology and to the Society through grassroots promotion of ASH’s career development and training programs. Ambassadors volunteer to serve as representatives of ASH at medical institutions to encourage underrepresented minority trainees to apply for ASH’s mentored programs.
For more information about the Society’s efforts in this area, see ASH Directions.