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Kansas Citians talk first-hand knowledge of medical bias in health care

Doctors, professors, patients speak on effects of bias in medical settings, changes in motion to improve care
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KANSAS CITY, Kan. — KSHB 41 anchor Kevin Holmes has spent months speaking with doctors, professors and patients about inequity in health care.

When certain patients are treated differently based on bias, explicit and implicit, there can be dire consequences.

In an effort to make a change, doctors who have witnessed inequality and patients who have experienced inequality are working to gather stories for "The Repair Project" to change medical school curricula.

Holmes shares their stories, perspectives below.

Experiencing bias

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Kim Weaver

Kim Weaver knew something was wrong, but she could not pinpoint exactly what.

So, like most people, her first reaction was to see a doctor.

However, leaving the visit with no resolve and feeling unheard was not what she expected.

"When I first started talking to my doctor at the time, two years ago, when I said that I was having problems with my menstrual cycle, he told me it was because I was fat," Weaver said. "He said, ‘You need to lose weight.’ That’s it.”

Weaver later learned she had uterine cancer.

“I’m a cancer survivor. It’ll be two years in June," she said.

Just like Weaver, Shalese Clay can recount plenty of moments when she felt unheard and undervalued while seeking medical care.

Her fear is that people, especially in communities of color, will become so apathetic they no longer see a doctor's visit as a viable option.

“We should not get to a point where I’d rather choose losing my life than dealing with a doctor," Clay said.

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Dr. Isaac Opole (right) and KSHB 41 anchor Kevin Holmes

Dr. Isaac Opole, a proud first-generation "free Kenyan" who practices internal medicine at the University of Kansas Health System, says he found health care disparities
"shockingly apparent" when he moved to the United States.

“In the land of the free and the home of the brave?” Opole said.

Building Trust

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Dr. Christopher Brown

Mississippi native Dr. Christopher Brown has practiced internal medicine since 2012.

Growing up in the South is one of the many reasons he chose to enter the medical profession, noting the importance of representation.

He says some patients find comfort in receiving care from someone who looks like them.

“Building trust as soon as you meet someone allows for better outcomes,” Brown said.

Understanding how bias affects trust is part of the work Dr. Jason Glenn takes on to create a more equitable health care landscape.

As an educator, Glenn works to help future doctors recognize biases and change college curricula.

“The same way that we have to present ourselves a certain way in encounters with law enforcement, right?" Glenn said. "The same way we have to be on guard for how we look and how we manage ourselves when we walk in a store, because someone may possibly stereotype us as shoplifting.

"All of those ways Black folks have to negotiate how they’re being perceived. It’s an all-encompassing thing in our everyday lived experience. It should not be that way in the doctor’s office as well.”

Déjà vu

Weaver says many of her health care experiences have involved laughing to keep from crying.

“My daughter has two birthing stories that she almost died through, at two different hospitals," Weaver said.

At 27 weeks pregnant, Weaver's daughter went into labor. As she bled profusely, she requested pain medicine.

Weaver recalls that while doctors say they ordered the medicine, it was never ordered.

Her daughter and grandchild lived through the experience, but Weaver says the scary situation felt like déjà vu.

During her second pregnancy, she gave birth to a stillborn.

“Before that, they had gotten a heartbeat,” Weaver said. “So when I’m in labor, they’re saying, ‘Well, your baby’s been dead for weeks.' And I’m like, 'No, they had a heartbeat just downstairs.' And they’re like, 'No, not possible.'”

She was pregnant with twins.

“It took a nurse coming upstairs to say yes, I did have a heartbeat, there was a baby still there, for them to realize I was still in labor, having another baby they weren’t prepared to help save," Weaver said. "In that moment, I felt tired. I was 19.

"And what do you do when you’re arguing, saying they had a heartbeat in the emergency room, and the nurses are telling you, 'That's not possible.' I was not being heard, and I think I was not being heard because I was a young, Black woman.”

Breaking down bias

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Jason Glenn, Primary Educator and Executive Director, The Repair Project

Many people are unaware they have a bias, including medical professionals.

Thus, educators at the University of Kansas Medical Center are reevaluating syllabi and curricula for future doctors, a process dubbed "The Repair Project."

Dr. Jason Glenn is the project’s executive director and primary investigator.

“It’s based on the simple premise: how do we at academic medical centers repair the harm that’s been done over the past centuries?" Glenn said. "Not just the mistreatment of people of color in the clinical encounter when they go see the doctor, but also the misrepresentation of people of color in the curriculum.”

The Repair Project aims to address racism in medicine from an educational standpoint, questioning theories that have been taught in classrooms for centuries and realizing the roles racism and social determinants have played in how we care for people of color in hospitals and health care facilities.

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Dr. Jerrihlyn McGee (left) and Danielle Binion

Dr. Jerrihlyn McGee and Danielle Binion both work in the University of Kansas Medical Center's office of diversity, equity and inclusion.

While Binion sees their work as beneficial for the greater good, she also feels as though the work is personal.

“It’s important for me that health care changes and that it’s more equitable,” Binion said. “Not just for people who look like me, but for all people marginalized.”

Recognizing biases and addressing them is the first step toward medical equity, per McGee.

“I think it’s important for faculty to own up to what we’re teaching, and that’s one of the things they’re doing," McGee said. "They’re taking a look at the curriculum in order to make those changes.”

Shared trauma

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Kim Weaver (left) and Shalese Clay

Weaver and Shalese Clay are dear friends and coworkers.

The pair shares bonds over humor, motherhood and trauma.

“Now I’m in my 30s, and it took all those years for me to understand I was a victim as well,” Weaver said.

Weaver and Clay both experienced childbirth-related trauma and say their stories share many similarities.

“For instance, I remember I was heavily medicated at one point,” Clay said. “The conversation never happened with me, it was around me.”

Hundreds of other women can likely relate to the pair, too.

The U.S. has one of the worst maternal mortality rates in the world — almost 33 (32.9) deaths per 100,000 live births.

Austria, Japan, Spain and Israel see between 2-3 deaths per 100,000.

Clay says the statistics are infuriating.

“Oh, I was angry, I’m still angry,” she said.

Further dissecting mortality rates, women of color are statistically 2-3 times more likely to die from pregnancy-related causes than white women.

This is where The Repair Project comes into play.

Weaver and Clay are using their lived experience to volunteer and collect stories that mirror their own.

Individually and in listening sessions, the two have sought out women who felt wronged while seeking medical care due to their race.

“I collected 20 women’s stories in maternal health,” Clay said. “And each and every one of them, except for maybe one, [is] the same cycle — 'I didn’t feel heard. The doctors didn’t listen. They told me I was okay.'”

“As long as we’re talking vague, nothing will happen.”

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Dr. Carmaletta Williams, executive director, Black Archives of Mid-America

Eventually, the stories and possible solutions to repairing inequity in health care will be housed at the Black Archives of Mid-America, where Dr. Carmaletta Williams is the executive director.

“When we have specific stories, their faces, their lives and there are people connected to those stories, then they become real," Williams said. "Then we can look at them differently, and then we can also heal from that.”

Williams says real stories teach how to properly recognize bias in the classroom.

“Our purpose is to look at and collect stories about disparities in health care, especially based on racial issues. We know they exist, but we need the real stories," Williams said. "We need people to come and talk to us about it, and then we can do something about it.

"We can’t fix it if we don’t know what it is, but we also need to tell other people, other healthcare professionals and facilities, that’s when they train these physicians and nurses. Because nurses are the primary contact for most patients, these are some things they have to consider — they have to move them out of the box of ‘everything fits here’ and start looking at individuals.”

“Bias and racism is everywhere.”

Those words come from Brown, an Internal Medicine Doctor at the University of Kansas Health System.

After talking with Brown and Opole, an Internal Medicine Physician, Holmes learned more about not only bias, but how it can cut both ways.

“The cultural literacies you have to overcome sometimes," Brown said. "The medical literacies you have to overcome sometimes, and when you don’t look at it holistically, I think the overall patient care suffers."

Opole was kind enough to share a moment of shock for him during his career.

“I had my first Black patient with cystic fibrosis, which is a white condition, and it was a mountain for me to climb," Opole said. "To look at this dark skin lady and accept she had cystic fibrosis, because we’ve always been told that’s a disease of white people.”

Holmes said he's often been told and grew up thinking sickle cell anemia is a disease that only impacts Black people.

After talking with these doctors, Holmes learned it’s a trait with origins dating back to Africa. It formed as the body’s developed response to help fight malaria.

White people live in Africa too, so white Africans can also have the trait for sickle cell.

Holmes asked Opole how do we eliminate these biases on the front end so that future doctors don’t spread false narratives.

“There is a lot of hope that these false narratives are going to be eliminated eventually, and this is coming from the younger physicians now in training," Opole said. "Resoundingly, our students told us we can no longer perpetuate these biases.”

Race Based Medicine: “Where providers care for someone based on their race”

The hope is race based medicine will soon be a think of the past.

McGee described race-based medicine as “where providers care for someone based on their race. Saying you have a certain disease or you’re going to develop something because you’re Black or African American or you’re from the Latinx Community.”

She added, “The heath conditions for Blacks and African Americans have been grave.”

That’s why The Repair Project and its four components are so important:

  • Curriculum Development and Revision
  • Staff Training
  • Clinical Intervention
  • Community Accountability

As of right now, the Repair Framework is only being implemented at two schools in the country: University of California — San Francisco and now the University of Kansas Medical Center.

“When trust is there, patients in the community, people in the community will listen to providers.”

Holmes wanted to share an excerpt from the conversation he had with Glenn.

Holmes: “Stop me if you’ve never heard medical experts say this. Black people have a higher threshold of pain.”

Glenn: “That is one of the most pernicious stereotypes in the history of medicine in the United States. I have had patients report that they had been told this, um I’ve had students report they’ve heard that from some of their attending physicians who are teaching them.”

Holmes: “How do we eliminate that from the classroom? Not just pen to pad, but up here (the brain)?"

Glenn: “The issue we’re really trying to deconstruct is that for years in the medical field has measured there are different health outcomes. What they were ignoring are the social determinants of health, and in the United States, racism is the largest structural determinant of health. It outperforms class, it outperforms education. It cuts through everything, and that’s something as a society we’ve never wanted to confront.”

Rooted in stereotypes and assumptions

Even how doctors take tests for certifications and licenses are somewhat rooted in stereotypes and assumptions.

“The misconception that this is only a white doctor thing" Clay said. “But it is engrained in medical knowledge.”

Holmes asked Clay how the Repair Project could help her.

"By sharing stories like this, and letting people know that the way you’re treated should be top equitable care," she said. "Everyone should have the same amount of care. If you’re Black or white.”

Brown also weighed in.

"Building trust as soon as you meet someone allows for better outcomes," he said.

Clay said all people should feel comfortable going to the doctor.

“We should not get to a point where I’d rather choose losing my life than dealing with a doctor," Clay said.

Weaver said it's not too late to change the future for everyone.

“There have been a lot of wrongs that have happened," Weaver said. "We can’t go back and correct those wrongs, but we can correct the course. To make sure those wrongs don’t happen in the future. That’s why this project is so important.”

Binion said though it may seem difficult, equal access to medical care is worth it.

“It seems like it’s a long road to traverse, but it doesn’t mean it’s not worth going down that road," Binion said.

Takeaways for your next doctor’s visit

Holmes said that perhaps his biggest takeaway after talking with those impacted, those collecting stories and medical experts, is to have an advocate.

Especially if you’re in an uncomfortable position or if for some reason you may not be coherent before, during or after any medical procedure or care.

Health experts at the University of Kansas Health System also recommend:

  • Don't be afraid to ask questions about anything you do not understand. If you hear jargon, ask your healthcare professionals to cut through it and "speak English;"
  • Don't be afraid to ask for a second opinion. It is your body, after all. Better a second opinion than a second surgery;
  • Speak up, if you are not comfortable with the situation, whether you are the patient or advocating for a loved one;
  • Do share your fears and concerns, however trivial they may seem. It may be the different between a smooth vs. traumatic experience;
  • Be positive, assertive and active in your care. It will go a long way in helping us care for you

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This story will run in four parts on-air starting Monday, March 27. The article will be updated as the series runs.