“Medical Mistrust in Appalachia” with Authors Beth O’Connor & Wendy Welch

JH: All right. Well, I’m going to be interested to what you make today as we are on this podcast. Well, that’s great. So, to our listeners tuning in today, we’re talking about Beth and Wendy’s new book, “Medical Mistrust in the Appalachia”. Beth and Wendy are here to share their insights from their book about medical mistrust in rural communities. We’ll talk about health literacy, declining trust in health professionals, and, of course, what all this has to do with rural health. So, let’s first start about how this partnership began, because it does seem a little bit of odd fellow type. And what brought you together? Obviously, storytelling is important. But obviously maraging that with realities and fact and statistics is equally important. So, I’m interested. We’ll start with you, Beth, about the relationship in the beginning of that and the formation.

BOC: So, Wendy and I have been good friends and close colleagues for probably under the category of 15-some-odd years. We first started working together on cultural competency issues. Specifically in the areas of one, making sure that our urban partners in the statewide level understood rural communities, but also making sure that some of our foreign medical residents and nurses, weren’t being excluded because they dress different or they have different religious beliefs.

JH: So, Wendy, from your perspective?

WW: I went to Beth’s conference. This is a long time ago. I went to the Virginia Rural Health Association conference when I first started my job, and oh, I don’t know, 2010. Maybe. And I thought, what are these people on about? Have they even been to a rural area? And I messaged Beth and said, you need a cultural competence speaker. And she said, okay, here’s my next conference date. And okay, so I went and did that. And after that we kind of kept up with each other. I explained to my board chair once that if we weren’t friends, we would still be work colleagues, and if we weren’t work colleagues, we would still be friends.

JH: That’s an important relationship to have. So, Wendy, I’m interested in that conference you attended where you’re like, reality check. What was it that that really garnered your attention to make that outreach to Beth?

WW: So, universities across Virginia get tax breaks for assisting rural areas. Universities across Virginia are almost always in urban areas. And community colleges are almost always in rural areas. So, at the conference, the university was explaining how they were going to help the rural people out with their public health measures. Well, what you get from a university that needs a tax break is the kind of thing that they have left over, which they convince people in the rural area as a package that they should accept. For instance, the rural area has a flood, they bring fire extinguishers and tell you that they’re great for flotation devices. Right. The world’s on fire. They bring gasoline. Here you go, this will help you run your generators. We needed help with telehealth in a way that provided economic stimulus. And what we were getting was, you don’t need doctors. We’ll bring you telehealth. When it was over, I basically lit into Beth, and she was very gracious about it and said, okay, I heard every word you said. How are you going to fix it? Here’s what I think we should say. And she said, come and say it. And, you know, that’s the kind of person you hang around with for a while.

BOC: The other issue that we ran into is our statewide Department of Health folks. They live and work and often are from Richmond. And to no fault of their own, they’re frequently because of the budget and travel restrictions, not allowed to go visit communities. And so, they are making decisions while they sit in their office in Richmond based on statistics. Well, sometimes statistics play out differently in different communities. And just because the diabetes level is high in one area doesn’t mean that a nutrition education program is the way to go.

JH: Absolutely. We see that across the country. You know, as things are happening in state capitals, as they make decisions for rural healthcare, rural hospitals, they make those decisions, to your point, not based on visiting our districts. And this is why it’s critically important, important for us to advocate, tell our story, but get our elected officials and get the policymakers in the doors of our hospitals and our communities to see firsthand what is actually happening. And there’s usually a breakdown between the two. So, thank you for elevating that. And I want to jump right in today because there is this idea, there’s this belief and there’s this knowledge that we’re witnessing of the growth of mistrust and medical professionals in medicine. Lot of conversations around social media regarding this. And, you know, we have individuals telling us, even on our own podcast and in conversations about how their YouTube stars are directing them in health and in advice. And it is a it is a huge gap right now that we find. And what we identified is that there is this growing mistrust. And I want to ask you, Beth, I’ll start with you from your perspective. You know, what do you feel, having been 20 years in this, serving in a national role? What is driving this?

BOC: That’s an entire book worth of information as we so published. You know, there’s several factors driving up. One is the loss of truly local healthcare providers. You know, Virgina is in many states, almost all of the rural hospitals and rural clinics are owned by a larger conglomerate health system. And so very few decisions are being made at the local level, including very much hiring practices at the local level. And with that, often your local family doctor instead of when I grew up, it was the same person for the entirety of my childhood. It may be a new person every five years, or even every year as they switch folks around, and so it’s harder to develop that level of trust, especially in a rural community, when connections are so much part of their social economy. When you don’t know who your doctor is going to be tomorrow, you don’t know who their kids are. You don’t know who the neighbors are. You don’t know where they go to church. And that makes it very difficult to sustain the level of trust needed in situations such as a pandemic.

JH: Yeah, absolutely. So, Wendy, let’s take that question a little bit further. And you know why do rural communities appear to be more susceptible to that medical mistrust.

WW: It’s not definitive that they are, but taking it as a plausibility. One of the reasons is the words that people use on rural people when they’re talking about medicine. The word education. If I hear one more legislator develop a bill to educate people about nutrition, I may not be responsible for my actions. They’re not uneducated. They have economic difficulties. They have access issues. They have free birthday cake from the food bank. And it’s $4 to buy ahead of organic lettuce that’s going to be brown by the time they walk three miles home because they don’t have a car. I don’t want to hear the word education in these issues because it drives a wedge. When if you were to say to me today, well, Wendy, it’s really sweet that you’re here, but, you know, you really don’t have the qualifications to be here. I wouldn’t believe another thing you said, right? You would have you would have insulted me at a level that we wouldn’t recover from. And that’s what happens in medical school. I don’t think the people I work with, the program that works with medical students and residents, and I see the medical students entering medical school starry eyed and ready to cure cancer. By the time they get to residency, they believe that poor people spend their money on goldfish crackers and big telephone plans. They’re being fed a bunch of microaggressions about the way poor people interact with healthcare. I don’t know anyone in rural Appalachia who isn’t deeply invested in their own health. And you show me a mother in Appalachia who wouldn’t kill to make her children healthier. They don’t exist. So, I think the medical mistrust is partly because of the words that are being used in medicine to describe rural people who are in incorrectly synonymous with poor people. I also think it’s pattern recognition. If you are someone who went to a doctor, your mother has cancer, your mother died. You don’t feel that your mother got correct care. You find out later that there was incorrect care. You will be wary of a doctor. That is just good common sense. It’s pattern recognition. It’s not an unearned trust.

BOC: And to Wendy’s point about, you know, it’s not rural communities. I think we have to consider the fact that it’s any marginalized community is going to have issues. So, whether it’s African-American communities, whether it’s low-income communities, whether it’s urban communities, whether it’s, you know, whatever that marginalized group is. But when you look at the intersectionality of rural and African-American, rural and poverty, then that focus tends to look more rural because, again, people looking at data while they’re sitting in office in an urban area go, oh, look, a hotspot.

JH: Yeah, absolutely. You know, and back to Wendy’s point. I got in a very heated debate with a politician who talked to me about the issue of individuals using their Snap benefits to go buy Mountain Dew and that that’s not healthy for them. And I paused him there because I went on a one-man mission, to eradicate Pop Tarts and cereal from our food banks. I said, listen, here’s what’s happening. They’re standing in food lines, okay? To get what is given to them. They lack transportation. They’re getting the Pop tarts, the cereals, those things, because that’s what’s given to them. You gave them $63 a month in food stamp vouchers. Now, having a family of nine myself growing up, we were we were a family that utilized food stamps. And I remember that the food stamps that we received were didn’t nearly meet the necessity of our family. And I remember standing in lines at food banks and food shelters and knowing what was given to you. And it wasn’t the nutritious meals that we talked about. So, when this idea of politicians or even some health officials, folks, we have to recognize this, can’t blame all the politicians. I have health leaders that stand up today saying there needs to be better education upon—Listen, we’re talking about, you know, social determinants of health issues in these communities. And I think that’s what’s at the heart of what you just shared with us. And I’m so very proud of you elevating that work, because it’s a greater discussion than just the talking points of education. So fantastic work in identifying that. Beth, I want to ask you a question. So, with Appalachia, when the context came up, like they’re just uneducated, how angry did you get? Because I can tell you get fired up.

BOC: You know, when that narrative started to come out of it was it was absolutely infuriating. But it’s also this the feeling of helplessness of how do you combat this narrative on this national scale, when again, rural communities are under resourced, they’re not going to have, you know, a whole bunch of lawyers and reporters and whatever else that can push back on this narrative. There once again stuck with what they’re given. The rural community newspaper is dead.

WW: So, I have to tell a story here. We were at an area health education center statewide meeting. All of the AHEC had been summoned to Richmond, which mean most of us in southwest Virginia burned our travel budgets to get there. There was a sandwich platter we were not allowed to partake in. It was for the board only. We had to go down the hall and get sandwiches out of the vending machine, and we weren’t allowed to get bottles of water. I was so mad. I picked up a bottle of water and had an AHEC person chased me. A staffer from Richmond chased me with the water, and I gave it to another girl who had asked for water and been told she needed to go get another vending machine. But in the course of that meeting, the AHEC board sat up front. All of us who were running AHEC sat out in the audience and listened to them describe us to ourselves, and one of the women said, it’s very hard to get people to rotate into a rural area because there are no bookstores. Okay. I am the author of nine books about Appalachia. That’s how I was inviting Beth to co-author this, co-edited this one with the Co-editors. That’s how I had the relationships to ask Beth to do this and to bring it to the right publisher. In the course of writing that book, there was a lot of discussion about running a bookstore in a rural area. And because I run the Graduate Medical Education Consortium, I had invited kids who were rotating from those big universities. In fact, the university this woman was from, I had invited them to come to the bookstore and play card games with us in the evening after they got off their hospital rotations. She said to there and she said, they say they don’t want to go because there are no bookstores in Appalachia and no bookstores in rural Virginia. I went out to my car, got a copy of my book, autographed it to her, waited till the meeting was over, and handed it to her. And you would have thought that the woman was begging the floor to open up and swallow her. And I said, next time we come, please give us a sandwich. Thank you for your time today. Goodbye. That’s how mad we get. That’s how mad we get.

JH: You and Beth together is going to be a problem. I tell you, you’re doing great things to advocate. That is incredible. That’s an incredible story. So, you know, I’m in the process myself of trying to, you know, go through the laborious task of writing a book, and you learn a lot, right? I mean, there’s a lot. And if you don’t learn, I don’t know if you’re accurately positioned to write a book because in writing, you know, you learn. And so, I want to ask you, start with you, Beth. You know, as you sat down to discover, you know, what are the tenets of this book? What is our focus area? And then you start to write the book. What are some of the things that you yourself learn in this particular book that you started to write?

BOC: Well, since the book is essentially a compilation of stories from different perspectives, you know, there are many things where I knew there was an issue. But understanding the depths of the issue, especially for African American women related to childbirth, it was— honestly, I’m not sure that genocide is too strong of a term for how they are treated. It was horrific.

JH: So, Beth, let me ask you then, from learning that and seeing it, how is that shaped your approach in the healthcare field? I mean, what have you done to say? All right, I’ve identified the problem, but kind of like what you ask Wendy. Now, what are you doing about it?

BOC: Well, so certainly Virginia Health is on board with addressing maternal health issues. We currently have two federal grants covering all of Southwest and Southeast Virginia, including the Martinsville West Piedmont area, which has a big chunk of Virginia’s rural African-American population.

JH: All right, so, Wendy, I’m going to ask you the same question as you went through the process of writing this book, reading those, you know, those real stories. What did you learn?

WW: I learned that the ways in which people manifest anger doesn’t always result in policy change. I kind of had the impression that marginalized communities would unite in their need and wish to have respect from the medical community, but the marginalized community has within it, people who don’t talk to the other marginalized communities and their anger and their, “give me my piece of the pie” approach does not benefit the policy change. They can benefit their community. But it goes back to all the quotes we’ve heard from Martin Luther and Maya Angelou and other people who say, if we’re not lifting everybody at the same time, it’s not going to work. I think that came as a reinforcement to me, and I also think I saw the ways in which LGBTQ+ communities differed from black maternal and infant health communities in how they manifested their decisions about getting medical help because of the mistrust.

JH: Yeah. So, I would assume that you took your information and then applied it to your storytelling. So, you know, Beth took hers and, you know, in addressed issues within her association. But the information that you garnered and, you know, the charge that you got out of writing this book, how are you utilizing that in your everyday life and in your advocacy?

WW: I run something called the Community Nourishment Program. There are three sites. One is undergrads in pre-med, one is medical students, and one is residents. The medical students are learning that they’re up against the birthday cake, that the it’s your campaign against Pop-Tarts. They’re up against the free calories, and the free calories tend to be empty calories. They’re not up against people who don’t understand that they shouldn’t be eating Pop-Tarts. They’re up against people who will feed their children Pop-Tarts rather than go hungry. And they’re up against people is the wrong way to frame it in the first place. Their patients are not the things that must be corrected. Their patients are holistic people who must be treated within the systems in which they live. The Community Nourishment Program teaches young medical students how to enter the medical profession with that knowledge. I don’t think there’s a better way of teaching young doctors than to put them in the field. We take them to a rent-controlled housing group once a month. They cook for the people there, they play games, they run a craft, they don’t do any smoking cessation, get off opioids, lower your cholesterol education at all. They just hang out in the community and they listen to people. And once the people decide that we’re nice, and once the people realize we’re not from a church, they keep asking what church were from. Once they find out that we’re actually medical students, they want to know what we’re doing there, and we tell them, it’s cruel to tell people to eat better without figuring out how to help them do it. That is how we use the work that we’re doing with medical mistrust here.

JH: All right, let’s transition. I was with Rick Pollack a few weeks ago. We spent some time here. He flew to Michigan and obviously the soon to be outgoing AHA president, and I talked to Rick. Rick had, you know, for decades of experience working in Washington and dealing with some of the political pundits of his days and dealing with all the politicians. And one of the things that he said to me that really just stood out is he said, you know, it’s transactional in Washington right now. And he shared, you know, the nature of the business today, very, very grim outlook. But, you know, obviously, the current day political discourse is playing a role in shaping rural mindsets, their ideas and beliefs towards science and medicine. And I want your perspectives because you see it from a different lens as well. And whereas Rick tells me it’s transactional in nature, others tell me it’s volatile and it is. And so, I’m going to start with you, Beth. You’ve been on the national scene. You know, you’re leading a state. Give me your perspective in what you feel that that current political discourse, how it’s shaping that mindset.

BOC: So, I think everything that’s going on in the national level feeds into the whole concept of, we can’t trust anybody outside of the people that we work with, play with, have family with together. And I don’t think anything going on at the national, even the state level, is going to do anything but reinforce that we can’t trust what others are telling us because they’re trying to either make money off of us or otherwise exploit us.

JH: Well, after all, every day, in every state and in this nation, as national news, we hear waste, fraud and abuse. This program is waste, fraud and abuse. I just dealt with it last week in our state budget addressing issues and was told right to my face that we are waste, fraud and abuse. And all of a sudden good people who I know in my community, good salt of the earth people echoing those same words, not knowing that those are just hollow words used by politicians, that what we do here is mission minded work. And there’s such a grapple right now in our industry because of that. So, Wendy, I want to ask from your perspective as well, how does it shape how does that political discourse today shaping, from your perspective, science, medicine?

WW: The book I’m currently working on is about Hurricane Helene. I’m co-authoring with a radio IQ reporter out of Roanoke, and we are dealing with a whole lot of people who were Trump supporters who bought into the discussions about climate change, who lost their houses in Hurricane Helene, and who are dealing with the aftermath of how that coincided with the election and the changes in regulations about how you could get federal funds to assist you, the ever-present ubiquitous FEMA and a whole lot of people are looking at the difference between what they thought and what they are experiencing. There’s a wonderful book from the 1980s actually called Women’s Ways of Knowing, but it applies to all people. It ranges knowledge from standing in your shoes and looking out, to dealing with only your lived experience, to acquiring experience from others through their wisdom, to analyzing, to becoming an expert in a subject. A lot of the people that we talked to had no reason to do anything else besides stand in their shoes and look out until they were victims of a hurricane, and then all of a sudden, they had to make sense of their lived experience against what they had been told was the best way to go forward politically and in terms of their religion. They are figuring it out. God love them. They are sad. They are not dumb. They’re just trying to do the best they can with what their eyes are telling them and the mud their feet are walking on at the same time as they’re reconciling what someone they believed, someone they loved, usually a pastor told them. It’s tricky.

JH: Sure is Wendy. Great perspective. All right. So, in our industry we’re really good about talking about problems. I want to talk about some solutions as well because our listeners from across the country are tuned in today to say, all right, we’ve identified some of the problems. Mistrust okay. We understand that. But what can medical professionals—because this targets our C-suites, targets individuals that are in the healthcare field from all different hospitals, from PPS to Critical Access, you name it, are listening to our podcast. And so, what I want to do is lead them down this road of, okay, what can they do as leaders in healthcare to help rebuild that trust in their communities? And let’s start there. And let me ask Beth to give her perspective. What advice would you give them?

BOC: So, I think the biggest thing that leaders in rural communities can do to address that mistrust, and this is playing the long game, is encourage people from rural communities to look at health career options, work with not only your school kids to make sure that they have paths to education that can make them into future doctors and nurses, but work with people that are in your welfare to work programs to be able to have training programs to become CNA’s, and lab text and rad techs, all of those entry level positions that don’t require a four-year degree and pay a higher-than-average salary than working the counter convenience store part-time. So, anything that rural community leaders, rural healthcare leaders can do to support people to become part of the healthcare system themselves, so that you have people who are from that community providing those services is going to increase trust.

JH: Beth, do you have any, you know, at your association, do you participate in any promotion of those types of programs? Has your state, launched any of those? Do you have any success stories?

BOC: So, one of the things that the Virginia Rural Health Association does is we work with some of the workforce development boards. We just wrapped up a grant and are working on applying for a new one, to have funds to encourage people to enter nursing training programs specifically focused on people who are either unemployed or are working part-time minimum wage jobs, no benefits, and give them the support not only books and tuition, but making sure they have, if they need it; transportation assistance, housing assistance, nutrition assistance, childcare assistance, and also having not just the classroom experience, but mentoring, tutoring, to become successful in those programs. And, you know, get people into jobs that pay a wage that can they can afford life.

JH: Absolutely. All right, Wendy, give us some truths here. You know, talk to us at the same cadence and maybe passion that you gave to Beth many years ago. Tell us what we can do differently. How can we build that trust?

WW: I’m going to expand on what Beth said about the healthcare system. One of the problems with getting a young people into entry level jobs is that they tend not to have healthcare professionals in their household, in their extended family. We have a major healthcare system here where if you want to be a pre-med student, you have to find your own sponsor. You have to find the person who is willing to take you on. Well, they don’t know anybody. They call the hospital and explain who they are. And the hospital says, yeah, we’ll have somebody call you back. Those are those are busy places, right? That poor child is going to get lost to shuffle, as opposed to someone whose mom is a nurse who goes to the doctor she works with and says, my daughter wants to go to medical school. Hi. You know, it’s connected. It’s almost like social engineering. That’s a problem. But the second piece is actually mutual. It’s not just the professionals, it’s the patients. Patients need to become our own advocates in the sense that we have the right to ask questions. And when we are put in a position where we are being seen in a free clinic and we’re not seeing the same doctor every time, and we’re not being treated in a way that makes us feel like we’re being heard. We have the right to ask questions. We have the right to request information about the charges that are being given to us, and about the treatments that are being given to us and to consent to treatment. We don’t have favorite authors for the book, of course, but if we did, Julia Resil might be one of mine. And she wrote about a patient who was not asked about the men who came into the room while she was having a pelvic exam, and she had to say, I’m sorry, who are these two young men and what are they doing here? You have to be that person. Now, this is very, very difficult for Appalachian women in particular. It is very, very difficult for Appalachian women whose education level does not match the level of the guy in the suit. We have to tell them that it’s okay to do that, that the doctor should be listening to the patient, that the patient should be listening to the doctor. There’s a reason we go to people who went to medical school for 12 years to tell us what they know. We need that information, but we need to listen to each other. And I think if there’s one thing that I drill into the medical students that I work with, it is listen to your patients, listen to your patients, ask your patients if they have questions if they don’t ask them automatically already.

JH: What a wonderful friendship, professional relationship, and coauthor relationship that you both play. I mean, I see and hear the passion in both of your voices. Advocacy, obviously number one, telling stories is so important. It really is. We often say, I’m on the Hospital Association board for the state. One of our largest campaigns has been tell your story. And when we get the stories out there, that’s the reality. This is the individual at the Dollar General who’s working very hard on Medicaid to take care of her three children. And those are the stories that resonate beyond the quips and, you know, the quick sound bites of waste, fraud and abuse. And you both are doing that so remarkably well. This is a collection of stories. We’re going to drop how you can order that in our show notes. Rural health Today is actually going to purchase ten copies and give it away. So, if you would, please, as you’re listening today, if you want to be one of those to receive this free, we’ll ship it to you. Just drop us a note and the first ten to do that. We’ll get this book sent. Those of you who do not qualify for that, because we get rid of them so quickly. Please understand that you can order yourself a book and we would encourage you to do that. We’ll drop that information in the show notes and we could talk for hours. You know, obviously we don’t have that. So, I want to end, as we do each of our podcasts, with what we call rural health recommendations. And today, more than ever, the most tumultuous of times that we face, you know, the combating that we have, not only at the federal level, but at the state level and at the local level, all the challenges. We have high CEO turnover, retirements, people are leaving the industry, but a new generation of leaders are rising up, are getting into these roles, and it’s very overwhelming. You’re negotiating with payers, you’re dealing with politicians, you’re dealing with, you know, community members and literacy and social determinants of health and it all comes at you 200 miles an hour. And one of the things that we created was a segment called rural health recommendations because you’re the experts. Both of you have lived this. You’ve been through it for decades. I would like for you to share with our listeners one piece of advice, sage advice, some just a takeaway that they can take with them as they face some of these most challenging times. What would it be. We’ll start with you, Beth, one of your rural health recommendations that you would give to someone today.

BOC: I would say, stop trying to call or write your member of Congress and expect results. Instead, call the congressional office, ask for the name and email the staffer who’s in charge of health-related issues and start emailing that person and develop a relationship with that person. People are completely unaware of how much work is actually handled by those staffers, and they are very smart and very ambitious individuals. And if you give them useful information, they will use it.

JH: Absolutely. Great suggestion. All right, Wendy, what’s your rural health recommendation.

WW: If you are going to do your own research about your health, do not look up things that reinforce your research. There’s a whole chapter or section in the book about this. Don’t look up “kale why it’s good for you”, look up “the benefits and drawbacks of kale”. There’s an automatic implicit bias in those two titles, right? Look for real information. Read opposing viewpoints, watch both channels, watch Fox and CNN at the same time, if they’re both covering it, odds are good that it actually happened. That’s what we need. We need a people who are informed consumers of healthcare, who write out the questions they want to ask their doctor. Recognize that you’re probably going to get to ask three questions because you get you get to have three issues, not three questions, but you basically get to have three issues per patient encounter. Do your research before you go. And if that doctor does not take you seriously, if you’re a woman and that doctor does, as one doctor did one time and only one time, looks at the husband and says, “ah these women who get on the internet? Isn’t it cute?” Change doctors. And in a rural area, that’s tricky because there’s only two of them, right? And there’s a reason one of them has 26 patients and one of them has four. But get on the list with the 26 patients. You can’t afford to have a bad doctor.

JH: Wendy. Great recommendation. Thank you so much. Beth O’Connor. Wendy Welch, it’s been great to have you on the podcast. I look forward to having you back on again into the future. We’re going to promote your book. We’re going to talk about it. We’re going to give ten copies of that away to people. In the show notes, we’ll list that. Reach out to us. And thank you to our listeners for tuning in to Rural Health Today. Catch our next segment, Rural Health News to stay up to date on the current state of rural health every Monday, wherever you get your podcasts. And don’t forget to check out the latest updates and resources from Rural Health Today at ruralhealthtoday.com, and make sure you subscribe to the show so you never miss an episode. Until next time, remember Rural Health Strong.