• Podcast
  • Mar 25 2022

‘Research Made Possible’ Podcast: Schoenberg on Community-based Research

The best solutions begin when you listen to the people whose problems you’re trying to solve. That community-based focus — the crux of what Nancy Schoenberg, Ph.D., says is her approach as a medical anthropologist — has been a guiding value through her 25 years at the University of Kentucky. In this “Research Made Possible” podcast, Schoenberg shares what drives her work on diabetes and cancer in rural communities across Kentucky.

“We are not the experts. The experts are the people we are talking to, so we need to listen to people,” said Schoenberg, the Marion Pearsall Professor of Behavioral Science. “We need to honor that what they say is important in their lives, and why they do and don’t do things. And once we do that, then we can work with them to come up with evidence-based solutions.”

Since 2009, Schoenberg has served as principal investigator on more than $10.8 million in sponsored grants and contracts. She currently leads a mobile health research project, based on an intervention designed at Northwestern University, that targets healthy lifestyle choices.

In 2021, Schoenberg and Mark Dignan, Ph.D., a professor in the College of Medicine’s Department of Internal Medicine, received $764,000 from the National Cancer Institute for Addressing Rural cancer Inequities through Scientific Excellence (ARISE) to train 10 postdoctoral researchers to address cancer-related health disparities in Appalachian Kentucky.

Schoenberg’s goal to train a diverse future workforce of clinicians and scientists is evidenced in her many roles: director of the Center for Health Equity Transformation (established in 2018 to enhance innovative, transdisciplinary and impactful research and training to improve the health of vulnerable Kentucky residents), co-developer and director of the Research Scholars Program (established in 2021 to ensure diversity and inclusion in research by promoting faculty success), associate vice president for research in research professional development and associate director at the Center for Clinical and Translational Sciences.

Intro: Have you ever wondered who is doing the research that impacts your future? The “Research Made Possible” podcast lets you meet those people and learn how research, scholarship and creative activity at the University of Kentucky is changing what’s possible in Kentucky and beyond. Here’s Alicia Gregory, Director of Research Communications.


Alicia Gregory: In this podcast we’ll meet Nancy Schoenberg. She’s the Marion Pearsall Professor of Behavioral Science in the University of Kentucky College of Medicine. She’s also the founding director of the Center for Health Equity Transformation at UK and a member of the leadership team of the national Rural Policy Research Institute.

NANCY SCHOENBERG: I became a researcher because I believe in the power of research to transform lives. Research is really the best way that we have right now of changing our regular course of action, to improving how people do things, to documenting where improvements need to be made, and to providing that evidence base for the most effective and cost-effective and efficient way of helping people. I'm a missionary for research, because I know that research really can change lives, and it's the best way that we have right now in promoting healthier lives and happier lives.

So I'm a health equity researcher. My goal is really to use the evidence base to improve health outcomes for all populations. So we know that there are certain populations that suffer disproportionately from conditions like diabetes and cardiovascular disease and cancer. Because of research, we have in our power the opportunities to improve people's health. And we know that not all people have the same outcomes. So since we have these technologies and approaches and ways of improving lives, there's no reason why the same people have to keep suffering from the same conditions disproportionately. We know in our population, rural residents, African Americans, Latinx populations, and Native Americans shoulder a disproportionate burden from chronic diseases and acute diseases. And so my goal is not to have the other groups sink down, but in fact, to level the playing field, so that all people have the opportunity to live healthier lives.

My research really focuses on community-engaged approaches, working with local communities to help people have healthier lives. And that goes across a number of different disease areas-- diabetes, cardiovascular disease, cancer. Because in those areas, those are the leading causes of death right now, and we know that there are things that work. I think my background as an anthropologist really helped me to become involved with community-engaged research. So as an anthropologist, you do a lot of listening to people. The basic orientation in cultural or medical anthropology is that we, outsiders, don't really know what people are thinking or people's social lives or how people construct their lives. So we acknowledge that we are not the experts, and the experts are the people we are talking to. So we need to listen to people, we need to honor what they say is important in their lives, and why they do and don't do things. And once we do that, then we can work with them to come up with solutions and research, evidence-based solutions.

We have several programs of research, all of which do receive support from the National Institutes of Health. That's our basic biomedical and behavioral funder. And I've been so pleased and so honored to receive their support for my entire career. So we have several projects, all of which address inequities in health. One is a diabetes project, where we're trying to make sure that people have the tools they need to implement the best self-care possible. And then, we also have a component that ensures or tries to get them back to the clinic, so that they get that professional care that they need.

Most of our work involves community health workers. These are lay people. They're local people from the Eastern Kentucky communities in which we work. They're talented, amazing individuals. We train them about diabetes or whatever disease we're working on, and we train them in human subjects and upholding ethical behavior. And then, we teach them to go out and to do evidence-based programming. And usually, that works out very, very well for us and for the population.

So this one diabetes project. We have another project that is a relatively new one. And it is, to our knowledge the first randomized control trial of an mHealth, or mobile health, technology-oriented intervention in Appalachian Kentucky. What we're doing with that is, we are taking an existing evidence-based intervention that our colleagues at Northwestern University in Chicago-- they ran, and they came up with a wonderful program that has very strong results. And our goal for that project is to try to increase fruit and vegetable intake, to increase physical activity, and to decrease screen time. So it's an mHealth program that really focuses on improving lifestyle issues in Appalachia. And the reason we decided to do that was because in all my field work in Appalachia, we see a lot of people on their phones. There used to be the assumption that rural people don't have the technology. They don't use the technology. They don't know how to use it. These are all stereotypes, and they're not true anymore. So most of the people we work with in Eastern Kentucky, and rural people overall, actually do use a lot of technology. And so because they don't have opportunities in their environments for gyms or for other healthcare professional access, we know that using the internet and using technology may be a really good substitute for what's not available in their local communities.

The most fulfilling moments in our research is when we know we've made a difference in someone's life. when people come up to us and say, my mother did not die from cervical cancer, because she was in one of your studies, and in that study, you encouraged her to get a pap test, and she did, and she was able to identify her doctors, were able to identify early on something that looks suspicious, and you saved her life. Or when, in another study, people might come up to us and say, I started doing some exercise because of your intervention, because of your project. And I don't always go to the gym, or I don't always work out at home, but I'm on the road to controlling my diabetes or my hypertension better because of your project. Those are such satisfying moments. We've had so many victories-- people who've stopped smoking because of our programming, and people who have started venturing down a healthier life path. Those are incredible victories, but we have other ones.

So to see some of our staff members go from not having a lot of confidence in their ability to change lives, to starting their own businesses or to starting their own projects, that's incredibly satisfying. Over the years, we have trained dozens and dozens of students from all sorts of backgrounds. And to see them moving from being an undergraduate or being a graduate student without much experience, to actually conducting their own health equity research is immensely satisfying.

I really love working in community settings. So I don't usually take a center stage, because I am an outsider in many of the communities in which I work. I like to just sit there and watch the amazing progress that is going on around me. I like to sit there during community forums, or church services, or other times when people are gathering, and watch our trained, amazing staff do the work that they do so well. That's very exciting for me to be in that environment. I also love it when I see young people we've worked with and we've trained, get up and ascend to leadership positions. That's an amazing sight for me to watch them evolve and emerge.

So training that next generation is everything to me and to my colleagues. Every project that we have has lots and lots of students involved in all levels, from undergraduate to sometimes even younger than undergraduates, to graduate students, and postdocs, and junior faculty, and my faculty peer colleagues. We involve everyone from all levels. I want them to have a grounded experience. I want them to go to Eastern Kentucky or other rural communities and work with us. I want them to recognize the assets that those community members have, and that those communities-- even though they have challenges, they are amazingly resilient, vibrant places. I want them to grow in their respect for local people, and realize that they, too, are an outsider maybe, and they need to show humility in order to get things done. We're committed to training that next generation in rigorous research with the highest ethical standards.

So UK was my first academic position, my first and only academic position. I've just celebrated my 25th anniversary as a UK faculty member. UK has always been incredibly supportive of my research. As an anthropologist in the College of Medicine, initially, I think a lot of people did not exactly understand what kind of work I was doing. But over the years, when evidence starts to emerge, when I start to get more and more funding, when I start to publish more and disseminate my work more, start to train students, people start to understand, ah, this is what we call in translational science, T4. This is really outreach, taking those existing interventions, and making sure they work in a community setting. And people start to understand the importance of that work. UK has been responsive. I have never had any shortage of collaborators here. People's doors are open. I tell everyone that all they need to do is to contact someone, and for the most part, that individual will be happy to hear from them. They'll be excited to hear their new ideas, and they'll want to collaborate and to learn from each other. And that is a hallmark of UK--is our sense of collaboration, or sense of mission, our responsibility, and respect for the land grant. So the evolution of research, of the research enterprise, has been astonishing and positive, from my perspective. One extremely positive development is increasing inclusivity in research. We have a strong need to amplify that, to accelerate diversity and inclusion in research. We need to hear from all voices. There is no one group that has the market on solutions, on best research practices.

Studies have shown, time and time again, that the most creative, most impactful, most frequently cited publications are those from diverse research teams. So one trend that I am very encouraged by, but recognize we need to go a lot further, is making sure that all people are at the table--people from all backgrounds, all walks of life. Because we need their talent, and we need their input, and it just improves our science tremendously. True solutions to the most challenging questions are very complex. And focusing on multifaceted approaches, transdisciplinary approaches, including all sorts of diverse backgrounds and voices, is essential. Because these incredibly vexing, challenging health and other social problems can't be solved by one discipline, by one type of person. That is so critical to involve all voices and all backgrounds to truly start to address the questions that we as a society need to address--the health inequities and the social injustices and so we need everyone at the table.

CLOSE: Thank you for listening to the Research Made Possible Podcast. To subscribe to our podcasts on SoundCloud or iTunes, search “University of Kentucky Research Media.” And click “News” on our site, research.uky.edu.