“Racism-related stress, such as direct or indirect experiences of racial discrimination, may partially explain why Black women with SLE experience more rapid disease progression than white women,” says Connor D. Martz, MS, a doctoral candidate in human development and family studies at Auburn University, Alabama, and collaborator on the BeWELL study. “Studies have shown Black women with SLE who report higher levels of racial discrimination experience increased disease activity and irreversible organ damage.”
The correlation between racism-related stress and disease flares is obvious, Dr. Blazer says. “Black women with lupus have been telling us, forever, that when they become stressed out, they have lupus flares. As a profession, we could believe them,” she says.
In her research, Dr. Blazer is interested in “identifying where the discrimination meets the biology.” The “strange, bittersweet part of it,” she says, is that the research to validate this experience needs to be done at all.
Make a Difference
There’s no doubt it’s going to take dedication and hard work to address systemic racism in America’s medical institutions and practices. With a focus on improving systems, rheumatologists and rheumatology professionals can achieve wins in medicine like those seen when the civil rights policies of the 1960s resulted in positive health effects or the housing improvement programs in New York and other cities bolstered community health.1,16
Clinicians should ask themselves, “How do I work against this system, slowly but surely, little by little, piece by piece, with myself and my trainees and my faculty and my division and my department to chisel away?” Dr. Blanco says. “Because one person may not necessarily make a change, but lots of people working in unison can make a lot of change.”
The following recommendations are by no means an exhaustive list, but are actions that individuals and collectives can take to reduce systemic racism and the related health disparities in medicine.
Address implicit biases. Implicit bias training doesn’t guarantee biases will be eliminated, and in fact, it very likely doesn’t. However, being aware of implicit biases helps prevent them from manifesting into microaggressions that belittle marginalized groups.17
“I would advise clinicians—if they want to be truly invested in this journey of eliminating racism, eliminating disparities in health and moving toward more equitable care for all patients—to first spend the time to identify your own biases, spend the time to look at some of your own unconscious thinking that may color your care, … and then dare to engage your patients in a conversation about what’s important to them,” says Jillian Rose, PhD, director for community engagement, diversity and research at New York’s Hospital for Special Surgery.
Another way to address implicit bias is to use data to identify it, according to social psychologist Anthony Greenwald, PhD, University of Washington, Seattle, a co-collaborator on Project Implicit. He recommends organizations track data, identify disparities, make a change to address those disparities and then reevaluate.18
Create a welcoming environment. Biases can manifest in the physical environment, so it’s important to actively try to make all patients feel welcome and respected. Subtle things, such as the images used on a website or in a physical space, can signal to people who “belongs,” Dr. Rose says. To create a welcoming environment for all, imagery should demonstrate diversity (e.g., race, gender, sexual orientation), interpreters should be available and used for patients who don’t speak, or aren’t comfortable speaking, English, and staff should receive training to help them understand their own implicit biases and their patients’ communities.
“No one comes into healthcare saying, ‘I’m going to serve care with a side of racism today,’” Dr. Rose says. “We come in because we want to hold up the Hippocratic oath; we want to heal; we want to serve; we want to make people better; we want to be able to help to make our communities and societies better. Where we fail from oath to practice is that we do not remove barriers to systems and implement educational opportunities, so I can learn about the people who I’m serving.”
Another way to welcome patients is to offer non-standard office hours so patients who work a regular workweek have access to care and don’t have to choose between their job and their health.
Be an ally. In addition to ensuring a welcoming environment exists for patients, rheumatology professionals should foster an inclusive environment for providers from minority backgrounds. This can be done through formal diversity and inclusion work or programs or ad hoc by ensuring the right people are at the table to make decisions about diversity and inclusion programming and initiatives.
“You may not always agree. That’s okay,” Dr. Blanco says. But it’s important to ensure people from minority backgrounds have the chance to be heard.
Anti-racism training is another option to help elicit systemic changes in medical institutions and improve medical practice.4 A group that provides training and tools to help in the anti-racism movement is Race Forward, which has a racial equality impact assessment tool that can be used to ensure new policies won’t inadvertently support discrimination.
Seek to understand. In clinical situations, it may be tempting to assume why a patient makes certain decisions, such as choosing not to follow their medication regimen, but it’s important to ask clarifying questions. Seeking to understand a patient’s behavior can help inform the treatment plan and, ultimately, lead to better outcomes.
“We understand what people do, but we don’t necessarily understand why people do it,” Dr. Blazer says. “And we infer, and that inference is often rooted in bias.”
Implementing standardized medical processes may help alleviate implicit bias by taking individual decision making out of the mix. For example, having a standardized list of questions to ask when a patient doesn’t take their medication could eliminate bias and ensure the provider understands the underlying why.
“Now it’s not up to our biases whether or not we get that information; this is just what we do,” Dr. Blazer says. “Protocolizing medicine and medical interactions … is something that we should really be doing.”
Be selective in composing notes. Labels can follow a patient from provider to provider, biasing the next physician’s interactions with them, so it’s important to take care when composing notes while still creating a meaningful record. Buzzwords like “medication non-adherence,” “medical mistrust,” “non-compliant,” “non-adherent” and “difficult historian” blame the patient and don’t tell the full story behind an individual’s behavior.
Including these terms in a patient’s chart can disenfranchise the patient, which can be extremely detrimental, Dr. Blazer explains. For example, lupus nephritis and its treatment are complex and hard to understand, and the medication regimen is inconvenient and expensive. About 15% of patients with lupus nephritis progress to ESRD, Dr. Blazer says, and 50% of those patients are African American. These patients require dialysis or an eventual organ transplant, and physician bias in how patients are listed for transplant eligibility is a major reason for disparities.
Providers are more likely to add to transplant lists those patients who have strong social support systems and who are always compliant with treatment—criteria that are highly subjective and often influenced by medical chart review.19 In the U.S., more than twice as many whites as Blacks are rated “appropriate for a transplant.”20 The reasons are multifactorial, but bias in psychosocial review is contributory.19
“Because socioeconomic factors travel with race so closely, they can’t be disentangled,” Dr. Blazer says. “So if the risk factors disqualify patients from transplants, and Black people are very likely to carry the risk factors, then essentially Black people are likely to be disqualified for kidney transplants. That is structural racism.”