For most Americans, walking into a doctor’s office is a simple, if mundane, experience. They talk to the people at reception, fill out their paperwork and see their doctor.

But for people who don’t speak fluent English, a doctor’s office can quickly become a difficult place to navigate. About 8.3% of people — over 27 million individuals — in the United States speak English less than “very well,” according to the Census Bureau. In Kansas, there are almost 30 counties where over 3.5% of the population speak English less than “very well.”

Wichita State University Spanish and linguistics professor Rachel Showstack, Ph.D., recounted the story of one such woman in western Kansas who went to a dental office for tooth pain. Her first language was Akateko, an indigenous language spoken in Guatemala.

When the receptionist handed her a form in Spanish, which she could speak a little, but not read, she didn’t know what to do.

“The person at the front desk told her, ‘I gave it to you in Spanish, what’s the problem?’ but she needed help, and she wasn’t getting it,” Showstack said.

The dental office had a bilingual receptionist who spoke Spanish but didn’t have any way to translate the form into a language the woman could understand, Showstack said.

“There was nobody qualified to provide professional interpreting services, even into Spanish — who would be able to advocate for the rights of this woman,” Showstack said. “So, she left. She didn’t even fill out the form because nobody would or could help her with it.” 

Many of the languages spoken in Kansas come from Central and South America. Latinos are a very diverse group in Kansas, said Mariana Ramirez, LCSW, director of the JUNTOS Center for Advancing Latino Health at the University of Kansas Medical Center. In Wyandotte County alone, there are Latinos who have been in the state since the construction of the railroads the 1800s. They speak English at a college level, own businesses and have multigenerational bilingual families, she said.

On the other end of the spectrum, there are people who only recently immigrated and may not even speak Spanish, but a language native to their country of origin, making the health care system that much more difficult to navigate.

“It’s a very heterogeneous group, but there is this intersection of identities that they all have higher vulnerability,” Ramirez said. 

In southern Kansas counties like Kelly and Montgomery, there are thousands of people who speak Mayan languages who have immigrated from Guatemala. Many speak Spanish as a second language, but it can be difficult for them to navigate English-speaking spaces.

“They’re often told their language is a dialect, rather than a language, so people don’t want to admit that they speak a Mayan language,” Showstack said. “There are cultural barriers in the community as well as barriers in the health care system.” 

Ramirez described the issue as a lack of cultural congruence. It is difficult to navigate the health care system when there aren’t people who look like them or speak their language.

“Interpreters are amazing, and we need more of them, but there is nothing like being able to express yourself directly and communicate with another human being — just talking to each other,” Ramirez said. “When you’re using a third person, some of it is always lost.”

In Lakin, Kansas, the county seat of Kearny County, Drew Miller, M.D., chief of staff and family physician at Kearny County Hospital, interacts with patients in over 20 languages. When a meat packing factory opened in Kearny’s neighboring county, Miller said his rural community became an incredibly diverse one very quickly.

The most common non-English language Miller hears is Spanish, but it is closely followed by Somali and Burmese, he said. The hospital where he works uses a phone interpretation service called Propio to translate during appointments.

“The phone service is relatively good, but it’s definitely not ideal,” Miller said. “You lose that interpersonal connection of a person in the room.”

Sometimes they have to rely on family members to translate, which is also less than ideal.

“We’ve all done it enough to know that sometimes the family member either leaves out part of the conversation, or they may add in their own interpretation,” Miller said. 

Miller’s team has multiple bilingual providers who are able to treat patients who speak Spanish, but particularly as a rural hospital, they can’t afford to hire a full-time Somali or Burmese interpreter.

We just aren’t at a spot financially where we could hire somebody to do that,” Miller said. “Resources are always a struggle, just in general.”

Research Based In Community

It is not just in clinical settings where people of color and non-English speaking patients are experiencing disparities. There is a significant lack of participation by these populations in clinical research trials, where scientists determine if a new form of treatment or prevention, such as a new drug or medical device, is safe and effective in people. According to a 2024 report from the Kaiser Family Foundation, diverse racial and ethnic representation in clinical trials is crucial because drugs, vaccines and other therapies can affect groups differently due to variations in underlying genetics, experiences and environmental exposures. Marginalized populations often face barriers to accessing new drug therapies and treatments due to this lack of diversity in clinical trials and other structural barriers, including communications hurdles.

For example, nine percent of the people 65 and older in the United States are Latino, but Latinos make up only 4% of National Institutes of Health (NIH) studies that are related to medication for Alzheimer’s, according to Jaime Perales Puchalt, Ph.D., MPH, director of the Latino Health Brain Lab. In industry trials for dementia medications, they comprise just 0.4% of participants.

“If you don’t include Latinos and other diverse populations, there’s going to be bias in your results, and your results aren’t going to reflect the real world,” Perales Puchalt said.

The Latino Health Brain Lab is part of the Alzheimer’s Disease Research Center at KU Medical Center and also partners with JUNTOS. The goal of the lab is to eliminate disparities among Latinos specifically in the area of brain health.

Latino individuals are one and a half times as likely to have dementia than non-Latino white individuals, Perales Puchalt said. It is impossible to pinpoint a single reason, but Perales Puchalt attributes this to a number of factors: low socioeconomic status, language barriers, a lack of access to education and a lack of access to preventative health care. Latinos are also more likely to live in food deserts and unsafe neighborhoods, which makes it much more of a challenge to eat well and exercise regularly.

“If you don’t have much money, you are not going to be able to afford healthy food. If you can’t afford healthy food, you’re more likely to have diabetes. If you have diabetes, that’s a risk factor for Alzheimer’s and dementia,” Perales Puchalt said.

Part of the reason the Latino Health Brain Lab is able to reach the Latino population more effectively is because those involved in the research are much more likely to speak Spanish, which helps them communicate with research participants in a way that monolingual researchers cannot. 

“What we try to do is combine research with service, because if you create research that’s not directly perceived as valuable, chances are you aren’t going to get people to participate,” Perales Puchalt said.

When Perales Puchalt and his team first went out into the Kansas City community in 2016, they discovered a need for education and accessible resources to help caregivers assisting those with Alzheimer's, especially because most caretaker resources are in English.

From this need came CuidaText, a program that sends daily text messages in Spanish or English to caregivers. The texts educate them about the disease, connect them to resources, teach them how to cope with stress, give them problem solving strategies for their loved ones and help them cope with challenging behaviors their loved one might engage in — all in their first language.

Caregivers can then respond with two types of messages. Key-word driven messages include a specific word, like “stress,” that will trigger a response tailored to meet that need. For “stress,” that response might look like a link to a YouTube or description of stress management techniques. If participants text something that’s not a keyword, a coach at the Latino Health Brain Lab receives the message in an email and can respond during working hours. Coaches help caregivers deal with their specific concern and help connect them to other resources, all in Spanish.

One of the reasons Perales Puchalt chose a text messaging service is because research shows that the Latino community uses text messaging more than anyone else, he said.

“It gives a sense of support,” Perales Puchalt said. “When we got feedback, they told us that even if they didn’t reply — which they don’t have to — they felt supported at all times, because they could text if they needed something.”

When the team received feedback on the program, it showed that levels of caregiver depression and distress decreased and levels of Alzheimer’s knowledge increased. Behavioral and psychological symptoms of the person with dementia also improved.

The service is now being adapted to other communities with CareText, which is tailored to non-Latino Black and rural communities. Perales Puchalt said it will be implemented in five counties around Jackson County on the Missouri side for people of any ethnic background.

Finding the Root of Hereditary Cancer

JUNTOS also leads a program that helps connect the Latino community with genetic counseling, which is a rapidly growing area of medicine that allows patients to better understand their risk for hereditary diseases, especially cancer.

About 5-10% of cancers are hereditary, and while the rate of genetic testing to determine if it’s hereditary is low for all populations, it’s “super low” for Latinos, Ramirez said. To address this issue, JUNTOS did focus groups with African American and Latino communities to gauge their knowledge about genetic testing and genetic counseling and their perception of risk.

“We learned that there was a huge lack of knowledge about genetic testing,” Ramirez said. “People kept referring to it as cancer screening, confusing it with a mammogram or colonoscopy.”

Part of the issue is that information and resources surrounding genetic counseling are less widely available in non-English languages. JUNTOS also discovered equity issues with accessing care.

“People came to us and said, ‘I have a family history, but nobody has ever offered genetic screening to me because they’re assuming that because I’m on Medicaid, I can’t pay for it,’” Ramirez said.

Ramirez and her team discovered that there was huge mistrust from the community about what was going to happen with the data. People worried that it would lead insurance companies to deny them in the future if their results were positive, or that their data would be used in experiments without their consent.

“We are serving as a connector that has this trust from the community, which allows representation of our community in research,” Ramirez said. “When we look at the  clinical trials, the number of Latino patients is not super high. Through some of these outreach and service initiatives, we get exposed to that population.”

Like the Latino Health Brain Lab, JUNTOS is able to connect with more Latino patients because almost everyone who works with the group speaks Spanish.

“We are a bridge between the community and the campus. People in the community know us, they trust us, we speak their language, we look like them,” Ramirez said. “So, when we’re conducting research, they can ask us questions they may not ask anyone else.”

JUNTOS partnered with KC Cares and started a virtual clinic for people who are at risk of hereditary cancer and don’t have the means to afford genetic testing or counseling. They also held an event at a local Latin grocery store where people could come learn about the program and give their sample. They enrolled almost 100 participants at the event, Ramirez said. 

“If the test comes back negative and they aren’t at risk, it’s such a burden off people’s shoulders, and I love to see that,” Ramirez said. “But it’s the people who come back positive and really need those resources and who maybe didn’t even know about genetic testing before — that’s how we know that we are where we need to be. Because they might not have known otherwise.”

Steps Toward Health Equity

One of Showstack’s goals when she founded Alce Su Voz, a coalition of Spanish-speaking Latino families, interpreters, health care providers, community leaders, and Wichita State University faculty and students, was to help the students she met who grew up acting as translators for their parents in every exam room.

“For some of them, it was a great learning experience. They developed their Spanish skills and it even prepared them to become professional interpreters,” Showstack said. “But it can also be really traumatizing, and it’s not legal.”

One of the ways Showstack and her team combat this issue is helping health care entities in Kansas create language access plants, which many currently lack.

“Language access plans are very important for knowing how the patients are going to be informed of the availability of interpreting services, how it will be determined that they need interpreting services and how it will be determined what type of interpreting services to provide for each individual type of health care encounter,” Showstack said.

These language access plans help streamline access to interpreters, especially in a bustling health care office, where it can be a challenge to make sure that both patients and employees are aware of what services are available.

“There are so many systems around health care that need to be in their language — instructions for how to take prescriptions, referrals, all of the printouts and forms,” Ramirez said. “You’re sick, you need medical attention, and now you’re having to think about how to answer on paper why you’re here, all in another language. It’s very stressful for patients.”

For both Showstack and Ramirez, training the next generation of health care professionals and interpreters is one of the most integral parts of their organization. JUNTOS supports students who are interested in becoming providers focused on Latino health and receives students from a university in Hidalgo, Mexico, every year. They also collaborate heavily with the Latino Medical Student Association.

“We have been able to support students who are maybe also first-generation and of Latino ancestry and speak Spanish,” Ramirez said. “When they find us, and we find them, and we can serve the community together — it’s a place to come together and do good things.”