Healing the health care gap in Dane County

The hospital is a place for healing. However, in Dane County and across the country, racial inequality and health care disparities, especially among Black patients, require some healing of their own.
A woman of color in the background gripping her arms and looking at the ground with three doctors in the foreground blurred out
Photo illustration by Tim Burton/Getty Images

It can take on many forms in a hospital room. Dismissive and disrespectful attitudes. Longer wait times. Stereotypes about unhealthy lifestyles and diets. Assumptions about insurance that sometimes affect prescriptions.

It can range from disheartening inconveniences, like not having culturally appropriate personal care items, to dangerous outcomes, like a misdiagnosis or a recommendation for an unnecessary surgery such as a hysterectomy.

These are all examples of responses from a recent National Institutes of Health study. At a place where people go for help — often in times of great illness — racism, racial inequality and health care disparities exist, especially for Black patients.

Jacquelyn Hunt, a Madison clinical substance abuse counselor, had two hip replacement surgeries and she has chronic arthritis. She says that in the past, she’s avoided getting medical care because she felt judged based on her race. When she did get care, she didn’t always feel like she was provided what she needed.

“Because I’m an older Black woman and I have deep Southern roots, we have all kinds of home remedies,” Hunt says. “But when I’m standing there in pain and I’m telling you I’m in pain, don’t offer me physical therapy. They need to know that as a Black person, I’ve already been enduring this pain for an extended period of time. When I finally come in, that’s when you need to just listen, not offer me to try something else.”

Hunt says her Black clients — and, once, a friend who was in tears from pain a few days after surgery — are often refused medication and directed to take over-the-counter pain relievers. A 2016 study published in the Proceedings of the National Academy of Sciences found that 25% to 40% of early-career doctors believed that Black people had thicker skin than white people. Those doctors were more likely to show bias and downplay Black patients’ pain.

“Racism in health care is and has been a major issue,” says local nurse Kylie Kilmain. “But I’ve never seen any of my co-workers blatantly give different care to patients because of their skin color. From what I’ve experienced, a lot of poor outcomes result from unconscious bias. Our education mainly focuses on white people and what their symptoms and lab results translate to.”

In Dane County, the majority white population, at 85%, has dramatically different health outcomes than Black people, who make up 5.7% of the population. Gaps in life expectancy, premature death and infant mortality are just a few of the telling measures.

In 2020, it became glaringly obvious that people of color in Wisconsin were disproportionately affected by COVID-19. Barriers prevent some from getting vaccinated, and data shows white populations have higher vaccination rates. The many reasons offered for the disparities were generally tied to external factors that can be beyond an individual’s control: where they lived and worked, or their levels of income and education. But the Wisconsin Department of Health Services acknowledged that “individual choice is not what keeps these communities from being as healthy as possible. In fact, structural racism and social factors often create barriers and obstacles for many people.”

The Wisconsin Department of Health acknowledged racism as the cause of health disparities early in the pandemic and gave $3 million to groups already working toward vaccine equity. It also launched a $6.2 million Vaccine Equity and Community Outreach Program using $3.1 million in federal funds. Health care organizations have ramped up diversity, equity and inclusion programs. But top-down directives alone haven’t proven to be short-term fixes for centuries-old oppression.
Researchers, health systems, community coalitions and companies are engaging their employees and communities of color, bringing more seats to the table with adaptive approaches to confront the effects of racism and internal bias. But this movement to change a health care system that doesn’t effectively serve 100% of the population is an uphill climb.

A Black man in a suit with a pocket square standing in a cityscape scene

John Eason (Photo by Steven Potter)

Researching Racism
University of Wisconsin–Madison sociology professor John Eason, who researches how non-white patients are affected by racial inequality in health care, has also been on the receiving end of racial inequality in local hospitals.

“I can speak from personal experience and having dealt with medical professionals here for the last four-plus years — it’s a major challenge,” he says. Eason directs The Justice Lab at UW–Madison, where he and his colleagues investigate why resources and services, like household incomes and public services, are unequally distributed. It’s been left to researchers to prove race-related gaps in care — and suggest how to address them. He says DEI practices alone can’t usher in full-scale equity.

In December 2020, Eason published evidence that Black patients get worse health care than white patients. In the research with the UW Carbone Cancer Center, Black, non-Hispanic pancreatic cancer patients were almost 50% less likely to get treatment and 33% less likely to receive surgery than white, non-Hispanic patients. But when Black patients were provided a treatment course at similar rates as white people, they had similar survival rates. The implication was clear: Addressing the structural factors that prevent Black patients from getting treatment, along with discussing treatment in a genuine attempt to understand a patient’s intersecting identities, may decrease racial health care disparities — and lead to higher Black treatment rates.

Research often shows that patients of color need better access to quality health care. And Eason says it’s crucial to focus on the inherent privilege of whiteness in the United States instead of sanitizing it with comfortable terms like “systemic racism” and “health care disparities.”

“The red herring that terrifies people, because it lines up with privilege, is [the phrase] ‘white supremacy.’ And that’s the culture of stuff we have to get over — the belief that white people are the best people,” Eason says.

Across the country, more health care centers are built near white neighborhoods and in urban areas while Black residents and people living in rural areas have less access to health care and specialists, according to his research. “Why did we put the best hospitals and health care where we did, by the richest people and by the people who ‘deserve’ it?” Eason asks.

What’s more, Eason says the for-profit health care model trains doctors to be elite scientists rather than humble public servants — ones who understand racial oppression. To get empathetic physicians, we need more comprehensive education, he says. “We’re going to have to start in medical school and even before, going back to requiring people to take a broader selection of courses. Otherwise we aren’t really going to be able to change how doctors operate. So that’s a longer-term cultural shift that needs to happen across every state,” he says.

But to pull up the deep and wide roots of racism, change must be systemic. “This isn’t just something that’s within the medical field; this is going to take a huge shift. And in the U.S. culture, [we need to adjust how we] think about medicine, what we use medicine for and the role that doctors see themselves playing,” Eason says. “Until there’s a full cultural shift — where we understand public health from a practical way — we’re just going to continue to throw money away. … It’s not good policy.”

Lisa Peyton Caire in front of a sign

Lisa-Peyton-Caire (Courtesy photo)

Start at the Foundation
Black women in Wisconsin are three times more likely to die as a result of pregnancy than white women. And for decades, Dane County has experienced a public health crisis of high Black infant mortality.

“We know that if the disproportionality of the rates looked the same among white mothers and white babies that there would be immediate urgency in generating solutions and analyzing care and making the necessary changes,” says Lisa Peyton-Caire, founding CEO and president of the Foundation for Black Women’s Wellness, or FFBWW.

From 2019-21, about nine out of every 1,000 babies born to Black mothers and birthing people (a gender-neutral term for a person who gives birth) didn’t make it to their first birthday in Dane County. That’s three times the mortality rate of babies born to white mothers. As recently as 2008-10, local data showed an infant mortality rate of 16 per 1,000 babies born to Black mothers, four times higher than that of white mothers and babies. Causes of death include preterm birth and related complications, sudden infant death syndrome and low birth weight. Two times more babies born to Black mothers in Dane County have low birth weight than those born to white mothers.

“Oftentimes, we talk about birth disparities and how they appear among Black women and Black populations, and we focus on race as if race is the determining factor,” Peyton-Caire says. “It’s not race — it’s racism. And so we have to look to the institutional causes that impact Black family life and well-being.”

For years, Black women have supported and advocated for each other while navigating pregnancy in a health system that doesn’t offer them as much support as their white counterparts. From its inception, FFBWW has prioritized helping Black women support themselves and each other in navigating their health care, including their pregnancies. This can take the form of coaching on how to interact with doctors who may invalidate their experiences, or recommending trusted physicians who will listen to them. “This issue of care quality is critical, and can make the difference between good or poor health and birth outcomes or even life and death for Black women and their babies,” Peyton-Caire says.

In too many cases, Black women who faced pregnancy risk factors like unstable housing or transportation issues might have been handed a flyer by their provider for a support agency. But outside the clinic, there’s often no coordination to help patients access resources that , when not secured, elevate their stress and affect their health. “If they continue to be unresolved, [they] can have real serious physical and mental health influences on that pregnant person, [which] puts them at risk,” she says.

As a core strategy of the larger Saving Our Babies initiative to improve Black birth outcomes, FFBWW and partner EQT By Design co-launched ConnectRx Wisconsin in April with the Dane County Health Council after three years of planning. This integrated support network includes Dane County health systems, Access Community Health Centers, United Way of Dane County, Public Health Madison Dane County and the Madison Metropolitan School District. ConnectRx screens for both health and social needs, and coordinates care and service referrals between clinics and community resource providers. Patients are further supported by community health workers and community-based doulas who provide support beyond the clinic walls.

First, ConnectRx developed criteria for pregnancy risk based on a community survey of Black Dane County residents. Then it connected providers, community health workers and nonprofits that support Black mothers using software from Epic Systems — the Verona-based electronic health care records pioneer.

Here’s how ConnectRx works: When pregnant Black women and birthing people in Dane County visit a physician, they’re screened for a set of six determinants of health. If they’re facing uncertainty around housing, finances, food, transportation or stress, they’re automatically referred to a community health worker who reaches out to discuss their needs. The health worker can connect them with community-based support organizations like the Urban League of Greater Madison, or a housing provider, or culturally competent mental health services. If they want pregnancy support outside of the clinic, they’re connected with local Black doulas. All of the information is documented within Epic, so referrals, follow-ups and progress are monitored alongside health data.

What’s more, a group of 21 local Black women — who are health care, academic, and community leaders and professionals — also advise and inform the broader Saving Our Babies work as the Black Maternal and Child Health Alliance.

“We’ve proven that listening to [the] community first is the guide to creating viable solutions,” says Peyton-Caire. “Work across communities and systems is very doable. And it has to be the model if we really want to shift the health disparities, the birth inequities that we’ve been chronicling and reporting on for decades now. We’ve arrived upon a pathway to real, viable, sustainable solutions that bring communities most impacted to the forefront and [we’re] crafting the strategies and solutions.”

ConnectRx Wisconsin is built on existing electronic health record technology designed by Epic, but customized to meet the specific needs of this project. By design, ConnectRx uses a unique universal screening tool to identify a patient’s most urgent social needs in the health care appointment setting, and seamlessly refers them to social service providers and community supports within the secure care coordination technology environment. ConnectRx uses the data to assess how the program is improving the pregnancy experience, as well as removing complications and barriers to lower Black maternal deaths and infant mortality. The pilot could even be replicated in other regions of the state, although Peyton-Caire says their focus now is to make measurable traction on improving Black birth outcomes in Dane County and Wisconsin.

A woman of color wearing a blue shirt, jeans and Converse sneakers sitting in a pink chair in a space age-looking room.

Jesse McCormick (Photo by Hillary Schave)

DEI in Health Care Tech
Epic’s mammoth market share of more than 250 million patients puts the company in a unique position to offer guidance on internal bias and DEI. In fact, says Jesse McCormick, diversity lead at Epic, the company developed its racial demographic capture information from the same activity used to gather patients’ sexes, genders and preferred names. Data related to race, ethnicity, language and ability status are vital because they can surface where disparities in health outcomes are occurring. Epic distributes a health equity strategy handbook with tools and recommendations to help health care systems confront racial disparities.

“Once you understand who your patients are, you need to understand where disparities are occurring,” McCormick says. The software stores information that’s translated to data analytics tools and condition-specific dashboards, like the one created for ConnectRx.

“We have our COVID-19 dashboard, we allow [health systems] to drill into race and ethnicity information and to determine: Are there vaccination disparities? Are there health outcome disparities? We expect and encourage organizations to figure out what that truly means for their organization,” McCormick says. It could be race, ZIP code, even the ZIP code of a food desert that’s noticeably affected by the pandemic.

But capturing data is only the first step. McCormick says measuring where disparities occur is step two and intervening to promote equity is step three. Now they’re thoughtfully adjusting predictive models to be race-aware and reduce bias where possible. Some health conditions are directly linked to a patient’s race, whereas other factors like implicit bias are more subjective and need objective measurement tools built into electronic medical records software.

“We want to make sure we’re taking a really scientific and rigorous approach to looking at each algorithm, each calculation, and think through, ‘What is the impact of patients with race or without?’ ” McCormick says. “So really, it’s focusing on a race-aware approach to care rather than a race-blind approach.”

McCormick says Epic also collects DEI feedback and best practices at its annual August Users’ Group Meeting, when thousands of customers travel to its sprawling Verona campus. However, Epic has been criticized for failing to promote DEI efforts, both in the software and the company. In a March 2021 Wisconsin State Journal story, then-current and former Epic employees of color said the company prohibited previously established DEI discussion groups on company time and canceled DEI trainings without immediately replacing them.

McCormick is the leader of Epic’s five-person diversity council, and she says they try to make sure DEI is woven throughout everything they do.

“If you have experience working in DEI, you know the work is never done,” McCormick says. “We haven’t just magically snapped our fingers and solved systemic inequity.”

The same goes for Black patients who don’t trust health care providers to give them the care they need — the cultural shift won’t happen overnight.

But for patients like Jacquelyn Hunt, better care is possible and something to remain hopeful for. She now has a great relationship with her primary care provider, but it took a lot of work between them to get to where they are today, she says.

“It’s going to take us to continue to fight,” Hunt says. “It’s going to take a lot of our white professionals to join us and to listen to us and to give us the resources. We can take care of us,” she says.

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Shiva Bidar-Sielaff

Shiva Bidar-Sielaff (Photo by Marla Bergh; Styling by Kayla Hietpas)

Centering Equity: Four Ways UW Health Is Addressing Racism

Health care workers can be subject to racism, too, and it happens more often than you think. A patient makes assumptions based on the race of the person in the white lab coat or scrubs, and they request another physician or nurse.

Racist words and actions come from all sides in a health care setting. In cases like these, UW Health, along with SSM Health and UnityPoint Health – Meriter, refuse to honor such requests related to race or ethnicity (unless it is an emergency and/or a request based on desires for concordant, culturally and linguistically appropriate care). UW Health recognizes racism as a public health crisis. The health system has prioritized anti-racist practices — both for staff and the community.

“Speaking very directly about dismantling racism is really critical to our work,” says Shiva Bidar-Sielaff, the chief diversity officer for UW Health, who stepped into the position in 2016. She became the first vice president for diversity, equity and inclusion in September 2020. Bidar-Sielaff shares four ways UW Health is addressing racism.

1. Community giving
Anti-racist organizations and hospitals don’t do their work in a vacuum. By teaming up, they can make more significant changes, particularly for groups that work with marginalized communities of color and the LGBTQ+ community. In August 2020, UW Health committed to give an additional $1 million annually to community organizations that do anti-racism work. That’s on top of the $3 million UW Health has given each year since 2019. Seventy-two percent of the funding goes to local non-profit organizations led by people of color, including the Progress Center for Black Women, Centro Hispano, Meadowood Health Partnership and the Urban League of Greater Madison’s Black Business Hub.

“We know that those organizations that historically have been underinvested in are doing really important work in, for and by their own communities, and that we need to continue to support and elevate that work so that we can impact the health of our communities,” Bidar-Sielaff says.

2. Reviewing policies and practices
Imagine being rushed to the hospital, getting treatment and then hearing that you have to stay a few days. But when it’s time to bathe, the hygiene products aren’t right for you. When UW Health got this feedback, they fixed it. “The hairbrush and the body lotions were not taking into account the needs of our Black patients,” says Bidar-Sielaff. UW Health consulted with the DEI department staff and a Black nurse to find more appropriate replacements. Now patients can look at a photo menu to choose hygiene products during their stay. “We have been contacted by almost every hospital system that I can think of across the country, asking us to share how we did this and how we went about sourcing these products,” Bidar-Sielaff says.

3. Employee resource groups
Community is important in every setting, particularly the workplace. In January 2020, UW Health launched employee resource/affinity groups for Black/African/African American and Latinx staff; Asian/Asian American/Pacific Islander employees; LGBTQ+ staff; women in leadership; and military service members. The groups create a safe space for employees and create a system for them to give UW Health feedback on ways to improve DEI. “They have created an incredible safe space for our employees that identify in those affinity groups to come together to support each other, to network and to set their own agenda and the things that they want to talk about in those employee resource groups,” says Bidar-Sielaff.

4. Ongoing education to dismantle racism in employees, the system and the community
One of the educational cornerstones of the DEI program is its reliance on “micro-learnings”: short trainings that departments take over a period of time. Topics have included the history of racism in health care, intersectionality and privilege. The ongoing training emphasizes that anti-racism work is a lifelong journey. “All of this work starts with individuals, providers and staff that work at UW Health and making sure that we really are providing the kind of environment both for our employees, but also the kind of care for our patients, that is inclusive, affirming and centers equity in what we do,” says Bidar-Sielaff.

“We have been contacted by almost every hospital system that I can think of across the country, asking us to share how we did this and how we went about sourcing these products,” says Shiva Bidar-Sielaff.

Holly Marley-Henschen is a contributing writer to Madison Magazine. This article appeared in the September 2022 issue of Madison Magazine.

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