Health Care Hacks with Elizabeth Hintz, PHD

There's all this research in our field about the differences and how people communicate about their pain with their clinicians. We know, for example, on average, that women tend to use more emotional language to report their symptoms when compared to male patients, that they report more symptoms at once and that they're more likely, they're less likely to talk about the ways in which pain has a concrete impact on their daily life and functioning. And if someone calls me and they say, how should I talk to my doctor about this? I give them the advice to basically report their symptoms like men would. Do not use emotional language. Talk about the concrete ways the pain impacts your daily functioning, quality of life, ability to do the things that you want to socially, recreationally. The benefit is felt both ways. I think it's important to realize that nobody is coming to save us. And I mean that in the sense that we can be the people we needed for other people. It's been really exciting and rewarding to be in a research university in a position where I have resources and funds to train and mentor young, chronically ill women, doctoral students who are studying these issues, but then also to do my own work and community engagement and to try to change the problems that plague the people and communities that I study. Hello, everyone. Welcome. My name is Dr. Stephanie Moss. I am a psychiatry resident and host of the Life as a Patient Doctor podcast, where we interview other health care and academic providers to share the humanity within medicine. Today, I am interviewing Professor Elizabeth Hines, PhD, who is assistant professor of health communication and inequality at the University of Connecticut. Thank you so much for being here today. Happy to be here and look forward to our conversation. If you want to just start with introducing yourself a little bit more and tell us a little bit about your own individual background and journey. I became interested in studying chronic illness because all of your guests on this podcast, I was a patient who lives with poorly understood chronic pain conditions like fibromyalgia, irritable bowel syndrome, bulbidinia. Endometriosis is within the wheelhouse of chronic overlapping pain conditions. I was a teenager and had a terrible time seeking care. I grew up in the rural Midwest, far from the specialists in New York City and L.A. that treat many patients with these conditions. And I became interested in studying how people communicate about health and being because of my experiences as a patient, having positive and not so positive interactions with health care providers and specifically clinicians, OBGYNs. When I went to college, I was interested in communication and started grad school. Didn't know that the field of health communication exists, which is what I do. Most people don't know what we do. Our field is an interdisciplinary hybrid of the humanities and social sciences. We study how people talk about health and ways to improve health outcomes by changing the way we communicate about health and being with our romantic partners, family members, friends. So that is a little bit about my background and why I became interested in health communication and ultimately became a professor. I love that. Thank you so much for sharing that. You are so right. That terminology, health communication, in my four years of medical school and then, of course, over 12 years of academia, I've never heard that term. I've heard communications, but I've heard of master's in science or public health. So that is really cool that you've been able to find that niche. And it's so needed of how to better communicate, how can we better support patients? So you talked a little bit about your own experience and how that drove you to be able to really advocate, learn how to advocate for yourself and teach others. What has come out of being a professor and your research on this topic? So much research about patients and their problems and their health concerns are conducted by people who don't understand what it's like to live with these conditions. And so it's been really exciting and rewarding, personally fulfilling for me to be in a position now where I'm able to give back to the communities that I am and was a part of in a way that's meaningful and to advocate for people who are like me, who are going through the things that I have gone through and others have gone through. So I feel there's that quote in Spider-Man that great power comes with great responsibility. And that's how I feel about my position now, being in a role where I can study topics that are of personal interest to me and meaningful to the community. Also, having the latitude to partner with community organizations who are experts at engaging people in creating social change. I've learned a lot from community organizers who are part of organizations like Tightlipped, for example, which is a patient advocacy organization for people with vulvovaginal pain conditions. It's been really exciting learning from them just as much as they potentially benefit from me being a member of the organization. The benefit is felt both ways, I think. I think it's important to realize that nobody is coming to save us. And I mean that in the sense that we can be the people we needed for other people. It's been really exciting and rewarding to not only be in a research university in a position where I have resources and funds to train and mentor young, chronically ill women, doctoral students who are studying these issues, but then also to do my own work and community engagement and to try to change the problems that plague the people and communities that I study. I'm so glad you mentioned Tightlipped. It's been an organization where I've found so much meaning as a patient myself with endometriosis and in the medical field. And I've been able to connect to so many wonderful individuals just like you. I would love to hear more about your position in Tightlipped. And you said you partner with them. What types of things have you done? Great question. So a part of the national campaign that Tightlipped is organizing, we have chapters all over the U.S. So Connecticut is one chapter, New York City, D.C., L.A., Chicago, et cetera. And all of these chapters have a leadership team. And we're trying to change the way that OBGYN residents are educated about vulvovaginal pain conditions, including endometriosis, but not limited to endometriosis. And so I am leading the UConn campaign to try to change the curriculum in the OBGYN department at UConn Health. In November, we held a patient perspectives panel at UConn Health and were able to get members from the community from the Connecticut Tightlipped chapter. I moderated the panel and it was attended by medical residents and staff, faculty in the department. And that was an initial first step for us. The longer term goals are to change the curriculum, to include required training about diagnosing and treating these conditions as a required part of the curriculum, not an elective. Ultimately, to get these issues and topics included on the licensing and board exams for these roles so that there is some impetus to know something about these conditions that affect so many women all over the U.S. and around the world. And yet we have these lengthy diagnostic delays and a general lack of knowledge about how to diagnose and treat these conditions. Tightlipped is launching this national campaign, and there's a version of me doing this work at all of our different chapters all over the U.S. I forgot to mention Philadelphia. We also have a chapter in Philadelphia. Oh, I didn't know about that one. That's amazing. I've worked a little bit with the one here in Chicago. That's where I went to medical school and have stayed for residency. Those patient panels, I can imagine they're so important, but I want to hear your perspective on why it's important to have that dialogue and for clinicians to listen to those stories in that context, the panel. Yeah, we know that stories could be really motivating and persuasive. First of all, people love stories and find stories to be sticky. There are things people have told me about their experiences that I can't get out of my head, good and bad things, but memorable. And so I think patient perspectives panels are so important because in order for something to change, you have to create buy in. And that buy in is so important from the perspective that if you want to change the way that something is being done, there has to be sufficient motivation for making that change happen. Even though I'm a UConn faculty member, I'm not appointed at the medical school. We're separate institutions. And even though I don't have an MD, but I have a PhD, that still creates this separation and barrier. So the change still has to come from within the organization. And in order to drum up that kind of buy in from the stakeholders who have the most power to make the changes, it's important to make people aware of the significance of the problem, but then also the need for change without emphasizing that these conditions are so poorly understood that there's nothing we can do, which is an interesting tightrope to walk as well. These things aren't well understood. And and also there are some really straightforward things that you can do to be knowledgeable about these conditions, that a huge proportion of your patients in outpatient clinic are probably reporting to you. So there's not enough training in medical school broadly for these conditions. And then when these people move into outpatient clinical practice, they're seeing patients every day who have these problems. And so it's creating buy in from people who might not recognize the need to address the problem for whatever reason. How do you deal with individuals, especially in the medical community, who don't believe you or don't believe that it is a problem? Yeah, great question. Too common, unfortunately, that these health conditions that we've been talking about are couched within this broader problem of the historical lack of women's health research and funding. For example, vulvodynia research, so research for people with chronic genital pain conditions that are debilitating in women. Those research projects compete for funding at the NIH with child pediatric cancer research because women's sexual health funding is within the Maternal and Child Health Institute within the NIH. So just the structure of the way that the federal funding mechanisms work, which is something that I've learned more about. I submitted my first NIH grant yesterday for the deadline. Seeing it's one thing to know that because I've heard other people talk about the problems, the structural problems that draw resources away from these issues, and it's not to discount the importance of pediatric cancer research. But to see it from the researcher's side, it's additionally frustrating to think about the broader landscape of women's health research in the U.S. that creates some of these problems that we're dealing with. So it's not gynecology's fault in the same way that it's not rheumatology's fault when people report with autoimmune disease. It's a broader and systematic divestment in women's health research across time that has led to this problem. But there are all kinds of really exciting changes at the same time that are happening in the field that I hope maybe 10 years from now we'll listen to this podcast and think about how outdated what I'm saying is people living with long COVID, right? Women have reported that these acute stressors, infections become long term illnesses for 200 years. And there's basically no research funding available for treating these conditions until what, 30 percent of the population lives with long COVID now. And now there's all of this research funding available to discover the mechanisms that take what could be an acute infection, trauma, sickness and become some longer term disabling multi-symptom illness. So there's lots of exciting change happening. We see that with endometriosis, too. Abby Finkenauer, who is a congresswoman from Iowa, testified in Congress in 2018 about living with endometriosis herself. And Congress voted to double federal expenditures on research for endometriosis, which is why since 2018, commercials on TV for drugs like Lupron and other sorts of innovations that are the condition is still there are still there's still a long way to go. But at the same time, it gets back to your question about why is a story so powerful? One story can really change people's perspectives on what it's like to live with something. I think it's important to remember that just because an individual person's story might be anecdotal doesn't mean it's not powerful or persuasive. That's such a good point. And as I guess the whole motivation for myself and doing this podcast is sharing the stories of real individuals who are both caring for others, researching, try to support others, but dealing with their own life and health experiences themselves. I'm interested because you study communications as stuff you learned impacted the way you have a dialogue with your own health providers on your own health conditions. Oh, absolutely. I say this all the time, but I think having a even though it's a PhD and not an MD, and you know, there's some consternation there sometimes. But I think having a terminal degree comes with a degree of privilege. I haven't felt spoken down to in the way that I used to feel since I received a terminal degree. And so I think that privilege and status inherently predisposes people to take what I say more seriously. But above and beyond that, if someone calls me and they say, hey, I'm living with endometriosis or I think I have this condition, how do I talk to my doctor about it? There's all this research in our field about the differences and how people communicate about their pain with their clinicians. We know, for example, on average, that women tend to use more emotional language to report their symptoms when compared to male patients, that they report more symptoms at once and that they're more likely they're less likely to talk about the ways in which pain has a concrete impact on their daily life and functioning. And if someone calls me and they say, how should I talk to my doctor about this? I give them the advice to basically, and this is problematic, but to report their symptoms like men would. Do not use emotional language. Talk about the concrete ways the pain impacts your daily functioning, quality of life, ability to do the things that you want to socially, recreationally. So, yes, to answer your question. Yes, it changes the way that I approach my own interactions. But I think the advice, because patients are limited in their capacity to affect systematic change, it would be great. And this is where my work is going, I think, if we could train clinicians to recognize these differences that also result in disparate outcomes for treatment recommendations. Women's pain is treated less aggressively. They're more likely to be recommended psychological care. You understand this. And instead of teaching patients to report their symptoms in a way that might be unnatural to them, it would be much more expedient to help clinicians recognize these differences and the inherent biases that sort of motivate the decision making that results in these outcomes, these disparate outcomes, especially for women. And so that's where the some people say, oh, clinicians are already so busy. Most of these people are not bad people. A lot of times they are doing what they think is right with the limited information and training they have. It doesn't change the fact that interactions in which you're not believed are taken seriously or for endometriosis, especially where your pain is normalized. Right. That menstrual pain is just part of being a woman. And this is what you have to deal with. All of these conditions are just what comes with the territory of being a woman, for example, that those interactions bring about diagnostic delays for endometriosis. It's 10 years to diagnosis. On average, I've spoken with researchers who say they've given up on trying to train clinicians because they're already stretched so thin that it's hard to get people who aren't already sympathetic to the cause to be interested in these kinds of things. Yeah. Whereas other people say that the only way to really change the problem is to work with clinicians to help them recognize where these things go wrong. I'd be interested in your hot take on that. Interesting thought. Yes, we are busy. Health care is busy, but that's where we have structured education time at different points to have these conversations, to learn whether that is didactics and residency or educational classes in medical school, or it's a requirement for physicians to have continued education like conferences. The opportunities are there, but you also make good point. You have to have motivation. And how do we get motivation in recognizing it is a problem or buying in? They have to have some intrinsic motivation themselves, whether they have a meaningful patient example that sits with them. They have a family member themselves have a health condition. Like that brings a little bit more intrinsic motivation to go to conferences or actually go to that external education. Yeah, that's such a good point. I feel that it's hard because the people who might most benefit from those kinds of perspectives to change their opinion, there are people who outright reject the premise of the existence of some of these conditions, like fibromyalgia, and the people who might most benefit from some kind of training like that are probably least likely to attend if given options about how to fulfill their continuing medical education credits. It's tricky. I think the broader landscape of reproductive health in the U.S. with the Dobbs decision, there's been a brain drain from a lot of conservative states and areas where OBGYNs are leaving because they cannot provide the care. They cannot uphold the Hippocratic oath and live in some of these states for their patients. And so that only further exacerbates this already dire problem of access for people like you and me who are living with these conditions. Not only are we battling the historical legacy of the lack of women's health research, and then also this contemporary problem of this really kind of patchwork legislative climate surrounding reproductive health and sexual well-being. We're facing all of these compounding and interlocking problems that make it hard to tease apart what avenues for intervention might be, which is why I think this national campaign to target residency education is so important, because if you can train the next generation of clinicians who are going to be in these interactions and make them aware of these problems, even if they've only heard of these conditions, you can go look at up to date for three minutes. For example, I love that you know what up to date is, because that's just our go to nowadays. If it's not in your specialty, that's our Google. Exactly. Yeah. I was just talking to one of my doctoral students about up to date. It's a great example, right? Oh, I attended this one panel when I was a medical resident. This woman talked about what it was like to live with endometriosis. And it sounds like my patient sitting in this room with me right now might have something very similar. Let me go look up what are the and even if the knowledge is insufficient, being able to point someone in a reasonably correct direction for a referral is still much more helpful than discounting their symptoms and acting as a dead end to their care. Yes. I'm going to jump backwards for a second, because you mentioned earlier about being spoken down to before you have title. And I resonated with that a lot. I've mentioned this on the podcast before. But while I was a medical student, just having that title, I thought it would give me power in some settings. It was in settings that weren't on reproductive and sexual medicine and health. It did give me power. They were more willing to listen to my concerns. However, then did the opposite. When I didn't start talking about women's health conditions, then was like, oh, no, that's just medical student anxiety. A lot of times we talk about in medical school how race can have a bias, how gender can have a bias, social economic status. Individuals who have lack of housing, how that can have judgment. But rarely do we talk about someone's position in society and title and how that can have a bias on how providers and health care workers treat patients. So I'm really glad you mentioned that. And I'm sorry that happened to you previously. It's the social interaction in which these disparities play out. Who are we more likely to believe? And like you said, the axes of gender, race and class which in many ways is education, but is also other things like what kind of insurance you have. Right. No one has ever accused me of trying to get welfare benefits because I'm on Medicaid, for example. And so I think it's this really complex interplay of all of these different factors that influence whether and to what extent a person's pain is acknowledged as being real or legitimate. The confluence of these factors together create this problem. And what's nice is that there are people in so many fields now who have lived through this, who are dedicated to improving care, both within the health sciences and MDs who are practicing within their fields and other fields of academia, medical sociologists and anthropologists. And there are lots of people who are interested in improving health care delivery and implementation. Yeah, I think, yes, it's all of those things. But I think we've never lived in a better time to figure out tools and communities and nonprofits, grassroots organizations like Tight Lift who are doing this work that they would have benefited from when they were in the most vulnerable position themselves. Oh, I agree. I'm really glad we connected. I'm trying to widen the perspective of what medicine and health care is, because it is not just doctors, nurses, pharmacists. There's so many people that have something to contribute to patient care. And I'm really glad that you're working on this and inspiring other individuals, both in the grassroots community and in education or health community, to be aware of all the issues that exist. And how can we solve? How can we work together to solve them? To finish off, I would love to hear any of your pearls of wisdom and advice to other individuals that are similar to you, that have their own health experience and are also working either as a health care provider in academia. Do you have any advice for them of how to either manage it or how to use that experience to affect change? Oh, such a good question. I feel like not being afraid to study your own backyard in terms of research topic is really important. I was having a conversation with a graduate student at a different university and we were talking absolutely brilliant cognitive science. And we were having this whole conversation about their research, which had absolutely nothing to do with this topic. And I said, what if you studied this topic for your PhD or postdoc? The thought never occurred to her that was even possible. I think sometimes and it can be beneficial to separate yourself from your research and your personal life. But I think in a lot of cases, you're motivated to do your best work when the work is personally meaningful to you. There are lots of ways to do the research. There are lots of different ways to do the work. You don't have to be a researcher. You don't have to have an advanced degree to affect meaningful change. You can get involved in support organizations for the conditions that you live with and help them organize the people leading these chapters for tight lipped, for example. Most of them don't have advanced degrees and don't have a background in community organizing. They're just people who lived through this awful experience and decided to do something about it. And that's really important to remember as well. People malign this idea that sort of research is me search. But I think sometimes me search is the best way to address the most important questions for people who are like you and who are in the communities that you study. Who better to know what the most important questions to ask are than the people who have lived through the experience that you are studying or that you are experiencing and now are trying to rectify through your service? You don't have to have any kind of special credential. You just have to be motivated and willing to work with other people. And willing to learn, which is also something that is hard for people with terminal degrees in general to admit. But I learn so much every time I talk to another patient or interview someone. I learn so much. And being open to learning, even when you feel like you're an expert in some topic, is really important. This humility that we don't know everything. And that's OK. I think those are two really important things to think about. Yes. I love all that you said. Just focusing on personal motivation. Understanding that as long as you have motivation, you can do something and working with other individuals, being willing to learn that humility. All those are such key aspects. I kept thinking of my profession of psychiatry, and we talk about those things so often. It's so interesting how that correlates. In order to really understand our patients, we have to be in their shoes. We have to do our own work first. And being curious on our own experience of what we've been through and then curious while speaking to others. And I think that's a lot. What you did is mentioning that we don't know everything, especially when it involves someone other. We just know our own experience. And sometimes we don't even know that and have to take the time to really process all the experiences that we've been through. Absolutely. And also to your point about psychiatry, which is such an interesting and important perspective, because so much of this literature would suggest that a lot of people with the conditions that we have get sent to psychological or psychiatric care. We talk about this biopsychosocial approach to care as this gold standard for thinking about our practice in medicine. But a lot of times people think about it in that order. If I can't explain it biologically with our available tests and knowledge, then it must be psychological or social. There's this book called Doing Harm by Maya Dusenberry. It's excellent. In the book, she talks about how research on autoimmune disease has transformed in medical practice in the last 20 years. But 24 years ago, psychiatrists were actually better at distinguishing between people who had autoimmune diseases and those who didn't than the clinicians who were referring them to that kind of care. And I think that's a really important reminder, but also that it's so important to have people who have different perspectives, who have a stake in ensuring that the problems we're studying improve over time. Highly recommend that book. It's my favorite book. It's from 2018. Doing Harm. I forget the subtitle. I think it's How Lazy Science Leaves Women Sick, Dismissed, Misdiagnosed. It's really excellent. And she talks about endometriosis and vulvodynia. And so the listeners of this podcast would be very interested, I'm sure. Amazing. I'll make sure to link that below. I have a book list for every single major health condition that we talk about on this podcast. So I'll make sure to add that to the list for healthcare providers and for patients. And it's funny that you mentioned the before and after of psychiatry and medicine, because I think as a whole medicine is changing and it's changing fast. And I think that's one of the reasons that psychiatry is one of the most competitive specialties right now is because we've had a whole transitional thought on what mental health is, how important it is. And how deeply it connected it with the physical body. And that's one of the reasons I went. It's to not say that my pain is all in my head. It's to say my pain is so bad and impacting my mental health and my mental health is impacting and worsening my pain, linking of the mind and body. It's all one thing. And so something that we always learn from our attendings is we are doctors first. We can't just say everything is all mental health. There can always be another reason for someone's pain or concern or like you were saying, how it's impacting their day to day life. So I'm glad you mentioned that. Is there any other thoughts you wanted to say before I summarize? No, I don't think so. I appreciate your questions. And again, I think the work you're doing is really important. It's one thing to create knowledge about something and it's another to create knowledge with the people who are going through that experience. Thank you for the important work that you're doing. Thank you. I didn't think of it like that. And I really like it. It's the combo of listening to patients. Like you said, that we're trying to do with tight lift and connecting to patients. I really like how you said that. Thank you. Interview of all the amazing things that you said, and just going back of your passion that, well, first you talked about where you came from and that you have a chronic health condition yourself and your struggle to be listened until later on in your career, when you had that education, you wanted to understand how individuals communicate their own health conditions with their health care providers that really motivated you to go into this and now to give back. You're teaching other individuals, both as a patient working with grassroots organizations, but then also teaching future people in academia, individuals getting their education, how to better communicate with others and how the communication works. You talked about how important it is for individuals to use their own experience as a motivator to do their own research or do their own advocacy, because you know so much about it and you can make meaningful change. You also talked about how the difference in communication between females and males, females using verbiage connected to their emotions, while individuals who identify as male use more description of how their pain or health condition is impacting their life. So when you are giving advice to other individuals who go in to see their healthcare provider, you recommend using that more male gendered approach. We call it ADLs, activities of daily living, and that hopefully will allow doctors to have more buy-in and more understanding that this is a real problem. It's not something that can just pass along to another day, something that needs to be addressed in that visit. So thank you, Elizabeth Heintz, so much for talking to me and for your advocacy work that you do, both in the academic field and in the grassroots organization. Thank you for having me. I really appreciate it. And thank you everyone for listening. There were actually multiple episodes that we talked about that I think would connect to this, individuals that also have vulvodynia are on tight lips. I'm going to link to that next episode. I think it was Sarah, who is a medical student now. I believe she's a fourth year medical student. I think that will be a great episode for you. If you like this episode, I think that will be a great one. Another one I'm thinking of is Olivia, who's also on tight lift. She's going into urology and she talks a lot about her motivation and talking to patients about how it impacts their day-to-day living. So just some other episodes that remind me of things that we talked about today. Thank you everyone for joining. Make sure you subscribe to Life As A Patient Doctor. Take care.