Data for All

School of Nursing staff and alumni are demonstrating why diversity within research is critical to health outcomes.

By Maggie Ginsberg

Illustrations by Jackapan Pairin

Native Hmong speakers. LGBTQ+ and nonbinary populations. Indigenous, Black, and Latinx communities. Victims of trauma and gender-based violence. All of these groups, while diverse even within themselves, have one key thing in common: They are vastly underrepresented in scientific research and therefore underserved in health care.

“I really do observe that there’s a lower quality of care for non-English speaking individuals,” says Maichou Lor ’11, MS’12, Cert’14, PhD’17, RN, a School of Nursing assistant professor and researcher focused on data collection to improve care for those with communication challenges.

She’s also a Hmong refugee who came to the United States in 1994 at the age of six. “The general absence of health data on the Hmong population and other subgroup populations really raised a lot of questions for me,” says Lor. “Why are they not included in surveys? What are the health disparities they encounter, and how can health disparities be addressed in the absence of data?”

Those are big questions that extend beyond the Hmong or other non-English-speaking populations — and Lor isn’t the only School of Nursing faculty, staff, or alumni for whom the mandate to close those gaps feels personal and pressing. But even for those who aren’t part of a non-majority population, diversity in research is foundational in creating objective measures that give nurses data and ultimately deliver better outcomes for every patient.

“Nurses are the number one most trusted profession, so we need to be trustworthy for everybody, not just for the people who look and talk and live like us,” says Madelyne Greene, PhD, RN, whose research examines the systemic mechanisms that cause and perpetuate disparities in sexual and reproductive health. “The reason that we need diversity in nursing research is because there’s no possible way that a homogenous group of people is going to be able to ask the right set of questions that will encompass what each and every person experiences in care, and academic nursing right now is homogenous; it is overwhelmingly comprised of white women.”

Luckily and notably, there is a wealth of innovative research currently underway by UW–Madison School of Nursing leaders to address these health inequities, and more.

Bridging the Linguistic and Cultural Gap

Maichou Lor

Lor earned her bachelor’s, master’s, and doctorate in nursing from UW–Madison, and grew up deeply embedded in Wisconsin’s Hmong community. Even before she had the data, she knew anecdotally that something wasn’t right about the health care she and her community received — or, more to the point, didn’t.

“There’s more and more cardiovascular disease in the community, and people are really scared because they don’t know how to manage it,” Lor says. “And a lot of these things are manageable and preventable if their blood pressure was addressed or if their diabetes was addressed. But people don’t quite understand the concept of chronic conditions, and one of the biggest factors is addressing the culture and language component.”

While the Hmong language has unique challenges—it is primarily oral, and even many of its native speakers can’t read or write it—other refugee and immigrant communities face similar barriers. Even communication through metaphors or verbal expressions, such as tonality or elongation of a word to differentiate severity of pain, doesn’t always translate between cultures.

“I did a pain characterization study and we learned that, for example, Hmong patients would describe pain in metaphors such as, ‘It hurts like chicken pecking’ versus saying ‘It’s throbbing,’” says Lor.

Lor was awarded a K23 grant to help the Hmong population communicate their pain symptoms in culturally and linguistically appropriate ways, working with a previous physician and a Hmong resident at the UW Health Northeast Family Medicine Clinic to map Hmong metaphors into the western medical terminology and co-creating images to supplement intake assessment forms. This further built on her dissertation, during which Lor received a fellowship through the National Institutes of Health (NIH) to develop and test a novel data collection method for the Hmong population to increase their participation in surveys. That method utilized an audio computer-assisted self-interview system that ultimately took those oral translations and color coded them into categories. Then, they were presented to the subject simultaneously with written English text for a family member to help assist with the survey.

More recently, Lor is collaborating with a physician, an audiologist, and a linguist to develop the “Word Recognition Test in the Hmong Language” — one that doesn’t yet exist in the U.S. — leveraging oral surveys, folklore and children’s books, as well as audiometric testing traditionally used to diagnose hearing loss. She has also received a Baldwin Wisconsin Idea Grant from the university to enlist the Hmong community’s help in creating a dictionary and glossary of Hmong health concepts for use by medical interpreters.

To help address the history of distrust between underrepresented populations and public health systems that are contributing to these groups not being reached, Lor is collaborating with the director of the Wisconsin Longitudinal Survey. Together, they aim to develop a community-based advisory group to build infrastructure for engaging the Hmong community in research and public engagement and education efforts. That engagement and bridging the overall communication gap is so critical to health outcomes.

“All of the work I’ve been doing is really trying to address the culture and language component so that we can bridge any gap related to any kind of health condition,” Lor says.

Using Research to Support Indigenous Survivors of Sexual Assault

Jeneile Luebke

According to a nationally representative sample from the National Intimate Partner and Sexual Violence Survey (NISVS) in 2010, of 2,473 Indigenous women in rural, reservation-based, and urban areas, 84.3% reported that they had experienced violence during their lifetime. As a PhD prepared nurse researcher, an enrolled member of the Bad River Band — one of six Ojibwe bands in Wisconsin that are federally recognized tribes — and a survivor of intimate partner violence herself, Jeneile Luebke ’02, MS’09, RN, PhD, wanted to better understand the prevalance of this experience.. More to the point, she wanted to apply research to make it stop.

“One of the biggest pieces I wanted to understand was, ‘What are the barriers to help-seeking?’ Because I knew, even as a highly educated woman, I kept that secret,” Luebke says. “I just didn’t trust anyone enough to talk about what I had experienced.”

Luebke, who will begin a faculty position in the School this fall as an assistant professor, first came to UW–Madison through the RN to BSN program. She then earned her master’s degree from the School of Nursing and went on to teach clinical courses at Edgewood College for 11 years. In addition, she spent five years as the maternal health nurse for a local Native American tribe, visiting mothers and babies in their homes.

“That was really my first introduction to understanding the health impacts of intimate partner violence and sexual assault and intergenerational trauma,” she says. “What most people didn’t know then is that I knew all too well what intimate partner violence was, but what I didn’t realize is how many other Indigenous women were experiencing it as well.”

Luebke found completing her PhD program to be a healing experience for her. For her dissertation, beginning in February 2020, she conducted lengthy interviews with 34 members of Indigenous tribes in Wisconsin; some were multiracial, all were between the ages of 18 and 55, and 2/3 had never sought formal help after experiences of violence. “It was just kind of exploratory, because there were no published academic studies about this in Wisconsin,” Luebke says. Then the pandemic hit, aggravating all of the factors that exacerbate instances of domestic violence, something Luebke was able to witness and track in real time, unfortunately.

“When our curriculum is very medical-model based and not holistic, and we’re not learning about the neurobiology of trauma and how that impacts our health, it’s really easy to pass someone off as non-compliant or difficult.”
– Jeneile Luebke

In May 2020, her research team received a $2 million Department of Justice (DOJ) service grant, named Tracking our Truth, to expand options for culturally relevant, advocacy-driven, and safe medical forensic care to American Indian women in Wisconsin after experiences of sexual violence. Luebke defended her dissertation that August and got right to work in her post-doctoral fellowship at UW–Madison. Tracking our Truth specifically allows for the hiring of Indigenous advocates and Sexual Assault Nurse Examiners (SANE), and also offers a free 40-hour culturally specific sexual assault advocacy training program by Red Wind, an Indigenous-led nonprofit organization created in response to the increasing needs of Tribal and Native specific programs to develop culturally specific responses to domestic violence, sexual assault, and stalking. The grant also provides a a free 40-hour SANE training, plus a two day skills lab course through the International Association of Forensic Nurses (IAFN) to help more nurses become SANE-certified, and partners with agencies across the state to help them set up their own SANE programs. The trainings are held both in Milwaukee and the northern part of the state.

This spring, she’s a co-investigator and key part of a new multi-site NIH R01 grant for a mixed-method study interviewing individuals as well as conducting focus groups and surveys to look at the barriers to care after experiences of violence during COVID-19 for Black and Indigenous women. Using research to understand how intersecting identities affect overall health is critical to good nursing care — and isn’t always obvious.

“When our curriculum is very medical-model based and not holistic, and we’re not learning about the neurobiology of trauma and how that impacts our health, it’s really easy to pass someone off as non-compliant or difficult,” she says. “Nurses really need to understand that sometimes people come in and they’ve had a traumatic experience and don’t always present like a typical person (who hasn’t experienced trauma). And if people have bad experiences during their interactions with nurses and other providers, especially Natives or other people of color, they’re likely not to come back.”

Using Indigenous Practices to Prevent Chronic Disease

Angela Fernandez
Angela Fernandez

Angela Fernandez, PhD, MPH, LCSW, joined the School of Nursing as an assistant professor through the campus Native American Environment, Health and Community faculty cluster. Trained in clinical social work and public health with experience working across nations and health care settings, she brings a unique perspective. But it’s her identity as an Indigenous person that drives her research, which examines the role of cultural practices that involve a connection with Nature — like gathering wild rice or burning sage in prayer — in the prevention of chronic disease.

“In my community, the woods is a place of healing,” says Fernandez, who grew up on the Menominee Reservation in northern Wisconsin. “You go into the woods to grieve, to participate in ceremonies — things that are important for healing emotionally and healing physically.” As a clinician, she also saw firsthand the multiple health benefits of connection with nature through community gardening among Milwaukee’s immigrant populations.

For Fernandez, research can illuminate Indigenous health interventions — which are culturally acceptable and sustainable. She has a grant to develop a psychometric measure based on interviews from American Indian participants across 10 tribes and three geographic regions, part of the American Indian Chronic Disease Risk and Sleep Health (AI CHERISH) study. The largest epidemiologic study of sleep health ever conducted with an American Indian sample to date, AI CHERISH studies how common sleep deficiencies are among this population, and whether they are associated with chronic disease, such as diabetes and cardiovascular disease. Fernandez’ grant takes it a step further; she wants to know how participants’ involvement with cultural practices that involve a connection with Nature may play a role in prevention. Does hunting, fishing, gathering, burning sage, or participating in other cultural practices connected with Nature make a difference in their sleep health or chronic disease outcomes, and does this vary by whether they live in urban or rural places? Fernandez’ psychometric measure is made up of 12 questions that are currently under review by tribal review boards. Upon approval, it will be added to the AI CHERISH survey, and will provide data which she can analyze to develop the measure and answer these questions. But the implications are even bigger.

“I have this opportunity as a researcher to tell the story of who we are and what’s important to us, and what makes us healthy.” — Angela Fernandez

“I have this opportunity as a researcher to tell the story of who we are and what’s important to us, and what makes us healthy,” says Fernandez, who has worked on similar NIH-funded studies. One such study, “Yappalli – The Road to Choctaw Health”, is a culturally-focused, strengths-based outdoor experiential obesity and substance use risk prevention and health leadership program that involved walking the Trail of Tears with Choctaw women. She sees her current research as inextricable from healing colonial traumas through human interconnection within Nature—not just studying disease, but the ongoing health practices that have helped Indigenous people survive and thrive. “I am very passionate about telling the story of why it is that we have the health disparities we have. When I look at colonization and historical traumas, I’m equally passionate about telling stories of why we are so strong and so resilient.”

Innovating Reproductive Health

Madelyne Greene

As a Hillman Fellowship recipient, Greene’s doctoral program was specifically focused on innovation in nursing research. “Typically, when people think of innovation they think about technology,” Greene says. “But there’s a lot of innovation and creative thinking that needs to happen in our health system and in the broader social structures that we now know so deeply impact health outcomes.”

Greene’s research is focused in two arenas. One is focused on LGBTQ+ health, specifically experiences with sexual and reproductive health care — the knowledge dearth, care gaps, exclusion, discrimination, biases, and assumptions. The other arena homes in on maternal health outcomes, especially for racial minorities. Wisconsin, for example, has one of the worst maternal mortality racial gaps in the country. Greene believes that’s due to largely preventable causes and highly variable access to maternity care, including where a person lives.

“I’m interested in thinking about how to get the highest quality, most up-to-date and relevant, personalized care to populations that are traditionally marginalized or structurally excluded from receiving that super high quality and tailored care,” she says, citing the example of trauma center levels and corresponding protocols. “If you live in a rural area and you go to a small hospital because you had a stroke or an accident, people in the ER know exactly what to do to try to stabilize you and get you to the next correct place. If you go to a hospital that doesn’t have the right resources, there’s a very clear system to transport you to the next level. But in maternal health and obstetrics, that system does not exist.”

“There’s a lot of innovation and creative thinking that needs to happen in our health system and in the broader social structures that we now know so deeply impact health outcomes.” — Madelyne Greene

Greene is building upon existing data sets created by fellow researchers at UW–Madison, including Dr. Deborah Ehrenthal and Dr. Lawrence Berger from the School of Medicine and Public Health, that include everything from birth records to Medicaid claims, to early childhood school records to incarceration records. Greene will additionally link to a data set of hospital-based information to track every birth hospital in the state – level of care provided, number of births each year, what resources they have, and more. “All of that is linked together so that we can trace back each delivery, the mother’s health history, and facility-based information about that birth, and try to start unpacking what happens at different levels of care and how better systems could be built.”

Part of Greene’s work is battling insidious cultural beliefs that continue today, further perpetuating these disparities that lead to poor health outcomes. For example, women’s complaints of pain tend to be taken less seriously than men’s, particularly Black women—she cites the article tennis pro Serena Williams wrote about the traumatic blood clot she suffered after the birth of her baby, and how her complaints of something feeling wrong were ignored—or the misnomer that queer women don’t need STI screenings or pap smears. “Their cancers are diagnosed at later stages, which we would have caught, so the assumptions are actually impacting care decisions and recommendations,” she says.

Leveraging the Importance of Social Networks for LGBTQ+ Populations

Elliot Tebbe
Elliot Tebbe

Elliot Tebbe, PhD, LP, is a psychologist who came on board as an assistant professor at the School of Nursing in the Fall of 2020. His research primarily centers on LGBTQ+ population mental health and disparities, particularly among the trans and gender diverse communities, or TGD. Lack of experience and training are still causing far too many negative interactions for patients, he says, even from well-meaning providers. As such, many patients rely more on crowdsourcing their social networks than on healthcare systems.

“I’m a queer and trans person myself and honestly, I don’t know that I trust my provider as much as I do first asking a lot of other trans folks, then judging that against what my provider says,” Tebbe says.

“Because I’ve been told all kinds of weird stuff over time from providers who don’t know what they’re talking about, or haven’t had that experience, or they’re operating on what they learned 15 years ago.”

Tebbe hopes his research can support TGD communities in receiving reliable qualitative data while also changing the system to serve patients better. One of his current projects is a competitive grant to support his study called “TGD Social Networks and Health,” which examines TGD communities in southern Wisconsin. He’s also conducting a qualitative study around sexual health among individuals in urban Midwest centers, as much of the existing research has been limited to the coasts.

In addition, he has received a two-year grant from the Office of the Vice Chancellor for Research and Graduate Education’s (OVCRGE) Understanding and Reducing Inequities Initiative with co-investigator Stephanie Budge, associate professor in the Department of Counseling Psychology in the UW–Madison School of Education, to support their pilot e-therapy trial addressing healing and stigma in transgender and nonbinary populations.

The grant allows them to recruit and train 10 Black, brown, Indigenous, trans, or nonbinary therapists to provide free counseling to patients who reflect these same identities. Sessions are recorded and data is collected along the way with a goal of addressing internalized stigma and the intersections of racism and transphobia.

“Don’t discount the power of that individual connection. Look for opportunities to advocate within the system. Educate other nurses. Educate other providers. Be fearless in trying to change the tenor of how trans folks are treated within clinic settings.” – Elliot Tebbe

All of this research, Tebbe says, is particularly relevant to nurses because they are typically a patient’s first interaction wherever they go. Although his work is focused on systems, he says he’s learned through his research that one positive interaction with a health care provider can make all the difference in the world for these patients.

“Don’t discount the power of that individual connection,” Tebbe says. “Look for opportunities to advocate within the system. Educate other nurses. Educate other providers. Be fearless in trying to change the tenor of how trans folks are treated within clinic settings.”