Suicide Rates and Insights from Medical Sociology - Healthcare Triage
Hi, this is Aaron Carroll. Welcome back to the healthcare trash podcast this week will be talking about precision health for the masses very exciting. This healthcare Josh podcast as many of our healthcare podcasts or sponsored by Indiana University school of medicine whose mission is to advanced health from the state of Indiana beyond by promoting innovation and excellence in education, research and patient care. I you school of medicine is leading Indiana university's first grand challenge. The precision health initiative, which we will talk about in detail today with bold goals to cure, multiple myeloma, triple negative, breast cancer, and childhood sarcoma and prevent type two diabetes and Alzheimer's. Our guest today is Bernice Pescalido, a distinguished professor of sociology from Indiana University. Bernice, welcome, thank you. So you are a sociologist. Yes, I am. What does this sociologist too? Well, I'm a medical sociologist. So that that gives you a particular type of sociology, which is we try to understand people's environments their identities. Their neighborhoods at how in this case it affects their health. So before we even get to this. What what are some of the work that you've done in the past as a sociologist that we could rapper headroom? Well, given the rise in suicide that's happened in the United States recently for the first time in about forty fifty years. One of the things I work on his trying to understand the roots of suicide. I also look at how people travel different pathways to get to a doctor at failed to get to a doctor, and I also work on issues of stigma surrounding illnesses that have been marked as different and have people suffered not only from the disease or disorder that they have. But also from people social reaction to it. So I want to actually go back to what you just said. The first refers there about about suicide. Yeah. So can you tell us a little bit more about that? Like, how do you actually go about trying to find out information about how or why people commit suicide? Well, that's a tough one because unlike clinical studies, or the kind of social survey worker interview work that we. Do there's obviously no respondent that you can talk to. So what you have to do is find out as much as you can about that person and about the circumstances in which they lived. And so there are some new unique data that the federal government has put together that we've been able to create a patchwork that really helps us describe the circumstances that a person was living in when they took their own life. So most of the work that I've seen surrounding suicide looks I think people who tried but did not I don't wanna say succeed. But did not yet leat. There Suzanne you can't talk to them. So you're actually looking at data on people who did completes. Absolutely. How do they get data and who's putting that data together? Well, it's important to look at both people who attempt at people who complete because one of the things that we know is that they're not the same people. And so you have to be very clear which of the two phenomenon you're looking at. And so the all deaths have to be reported in the United States. And they're reported by corners and medical examiners to the centers for disease control, and those then become aggregated into data sets that are held by the National Center for health statistics. And so we start with that. But that's not enough because as it turns out, there's not very much information on a death certificate. And so what we do is we start piecing together different aspects of their lives. Like, we piece together information from a study that's done every ten years on what kind of religions exist where the person was living. We also go to the American community study, which has detailed data on household income and on race, ethnicity and other things that we know are implicated in differences in who takes their own life. So still a lot of it is getting it sounds like secondary data. We're not actually talking to we don't, but one of the new things. Well. It's not not new. But since I started studying suicide many years ago the centers for disease control. Now does something called the national violence death reporting system, and what they do they started the project a while ago. And it's now in about forty two states, they started with a pilot of about seven states, but what they do is when anyone dies from violent death. They find either the next of kin or someone who knew that person. Well, and they go in they interview them, and that gives us a lot more personal information about the person who died by some kind of violent death and suicide is included in that data set. Those are called follow back studies, psychological autopsies, and what they do is is try to get a sense of the struggles that a person was having at that point in time. So for example, whether or not they were undergoing financial stress or relationship breaker, and they were if they had a mental illness. So the national violent death reporting system provides us with a lot of personal information about people who die from violent deaths so things like whether or not they were under financial stress or whether or not they they a relationship had broken up. Or if other people had died around them things that we know make people rethink their life, and and and affect whether or not they're tied to their community or they're sort of alone. So then you compare this to people that didn't commit suicide or is there a comparison group. Yes. Well, that's the novel thing about what we're doing here at Indiana University. So usually people either if their clinical scientists they work with hospital records or the death records themselves, and they work at the individual level or social scientists have tended to look at suicide rates. And so we would look at you know, what are the death rates in Indiana versus California or Alaska one of the things that that unique about what we're doing here at Indiana University is. We've put together information now on both individuals, and where they live, and that has given us a unique challenge of trying to harmonize the data from different places and really get a sense of a fundamental question that we haven't been able to ask before in the United States. So for example, we know that individuals who are unemployed or greater risk for suicide. But what we didn't know until we completed our first part of this analysis is that it matters what the unemployment or employment profile looks like where you live. So if you live in a place where lots of other people are unemployed, then your risk is not as high as we thought. But if you live in someplace where everybody is working, and you're the one that's unemployed. Then your risk is much higher source that sort of the Tako message what you found or whatever nursing things have you found. Well, we found that that kind of situation is also true for having physical problems. So if you live in an. Area where other people are having physical problems versus in a place where everybody looks like they're in southern California. Then that tends to increase your risk. So we actually found two different kinds of effects one is that having others like you around. So that even if you're going through divorce or stresses of unemployment or having physical problems if there are others like you around the tipping point seems to be about twenty percent of the population. Like, you then your risk is really dampened on these traditional risk factors for suicide on the other hand, one of the things that was really unique is that in some places suicide becomes the norm. And so if you look at places like native American reservations or allow the Alaskan islands off of Alaska there. It's the case that if you are members of native American population or Asian. American population Alaska native population, then your risk is even in increased if you live in those kinds of ethnic enclaves. So the society in which you live or the culture in which you live can either dampen the respecters for suicide or they can actually push you further toward that as an option. It's interesting. I remember from twenty years ago. There were some studies that talked about how health was related not just to like, whether you know, just what your socioeconomic status was. But how much of a disparity there was in the place that you live the places with higher levels tired differences between those who are the richest and those were the poorest were associated with worse health outcomes than if you were just in a poor area. Yes. Which just that somehow it is also the how different are you from those who are much wealthier that actually had a more significant effect on health. We've done just that. So that's interesting. Yeah. We know that poverty kills. Yeah. But what we didn't know is the roles of things like income inequality. Exact and the roles. Of not having other people who look like you Nick like you in an area because one of the things that the CDC has pointed to and this comes straight out of sociology is that connectedness is one of the fundamental aspects having to do with suicide. So what do we do about that? Well, I think it depends because you know, we tend to think we always talking about loneliness and loneliness is a risk factor. No doubt. But in fact, it's also the case that you can be to connected to a group. And of course, the classic example of that would be something like Jonestown, so what we have to strive for our communities in which there's both attachment to each other. But we're there is not a clenching up of the society in such a way that people don't have individual freedoms. So you you have to have a moderation of network ties. I want to transition if we can't to one of the second things mentioned was looking at how people have difficulty getting to physicians rice from getting into the healthcare system. So what are some of your work in that area? Well, our big steady on that was actually done here in Indianapolis. It's called the Indianapolis network mental health study, I think one of the big things that we found there was that the traditional way that people try to understand who gets to the doctor, and who doesn't wasn't very useful. In other words, one of the major images of people when they get sick is that they weigh the costs and balances of how sick they are. And whether or not how they have insurance, and whether or not they trust doctors all of those things matter, but in fact, the question of of what kind of pathways they traveled depend upon the social networks around them. And again, it's not you need more and more social networks because sometimes network will people in your network will push you away from care. We did a study comparing we didn't compare. Annapolis to Puerto Rico. But we did two studies one after the other. And in Indianapolis, having more networks got you into mental health care sooner. Because on average one of the things that we know is that it takes about seven years from the onset of a mental health problem for people to get services. And the question is what's happening all that time. Well, they're trying to figure out what this is. And is it just something about their personality? Is it something that will go away? Do they know other people have had these kinds of symptoms, and it takes a while to figure those things out? What what do you mean? Exactly by a network like when you say, they have more networks. What does that mean? It's really about who you talk to about your problems. And it's specifically who you talked to about your health because it turns out that if you talk to people who have had prior contact with the mental health system, they have a lot of information, and again, depending upon their experience in the mental health system. They'll. Tell you exactly where to go or exactly where not to go. And so those people matter, and sometimes it's the people closest to you. But we have to remember that the people closest to you also tend to have the same information you have. So sometimes it's that person at the Y that you walk around the track with who happens to be a nurse who can give you the information that your family doesn't have. So it's really about your health network contacts people you talk to when things come up. So I that totally rings true. Because I have no doubt that people who know me have far greater access to those people who don't and given that I'm a real proponent of therapy and mental health care. I've know I've helped many people probably push them to do that. And I can imagine the people I know do that as well. So how do you measure though, that like how do you measure the network to know like are you looking at individuals? How do you do that? Well, you have to start out with finding people who either have a problem, which is very hard or people. Who have entered the system, and then ask them just to tell you the story of how they got there. Because if you ask them to tell you, what are the reasons that they came they will like anyone else lay out a rational set of reasons of why they got their you know, they had insurance and their boss told them they had to go. But in fact, if you say if you ask it a little bit differently. If you ask them, not the way a medical history is taken. But the way we would tell stories to each other and say how did you end up at this hospital? They tell you a story that is very people'd, and you start to learn who are the people that matter in translating a symptom into a concern that requires medical help. So then when the announces gets done, did you try to trace it back to say like, well, these are key people in this whole group, or is it is it quantifying the number of networks, or is it a combination of both know we quantify it what's different about the storytelling approach is that. Instead. Head of having a list of things that you ask them about you use the story itself and code information out of that that you then quantify so let me give you an example of what I think one of the interesting things out of our Indianapolis study was most research that looks at people using services is called help seeking research. And right there it implies that people are out looking, but what we found in. The Indianapolis study is that there are actually three pathways to care just fewer than half of the individuals at some point made a decision to go. So that would be the help seeking pathway. So another way that about a quarter of individuals who end up in the mental health system. Get there is through coercion. Now, we can talk about two kinds of coercion. The obvious thing is when people are picked up by the police and brought into the psychiatric emergency room. Or when individuals are required by the court to. Seek healthcare. But there's also there's also the guilt factor. There is the mom, right? Who tends to be on both one of the ways we get networks as we ask people who do you talk to about these problems? And we asked them not only how much support they provide. But how much they hassle them and mama tends to appear on both. Right. And so you need people not only who support you. But people who put the pressure on you to take care of yourself or to do something about a problem. Sometimes it's the bosses who say you have to now go get a physical and see what's going on. But the third way that was really the most interesting was something that we called muddling through. And that really helps to explain why it takes seven years on average for people to get mental health care because in our study, there were people who couldn't really even tell the story or they told the story from a third person point of view like they weren't even the person taking the action. We had one person for example who was brought in as. Aside attempt and he talked about how in the front of his heart. He knew he needed something. But in the back of his heart. He just couldn't face it. And he ended up attempting to take his life, and he was brought in and successfully treated, and he told the story after that from the point of your sister who was a nurse in another town who his mom, call to sort of manage the system. So he sort of muddled into muddle through mental healthcare, neither committing to it or being very resistant against it. How many people do you have to get into a study like that? Well, we had about it's it's tough because you have to get people who are making their first major attempt at rare because having an illness changes your social networks, and so about took us four years to get one hundred and seventy two people who used either the major public or private hospital in Indianapolis funds that kind of work nationalist who'd have mental health. Yeah. And so they were very interested in trying to find other ways to understand how to get people into healthcare because the traditional models weren't really working that. Well, do they then take it and actually implement change? Or is that down the line? That's not clear to me on that issue. You know, on some of the suicide work that I do or the stigma work that I do it has much greater translation potential than sort of coming up with a new theory of how people get into care, although it does have implications for how you think about changing the system, and how you think about getting people to be more aware because going after individuals is probably not the way to do it. It's better to go after networks, and some of the work that's being done at the national human genome research institute is actually trying to figure out who in a network is sort of the CEO of the family of the medical in the medical CEO of the family and trying to. Figure out then how to educate them in things like understanding DNA and the role what that means for family and genetic testing, and so we're finding that in even in the United States where we think of the power of individuals is so strong. It really is about the connections. Among people the social aspect of their lives that have a lot of impact on what they do to stay healthy. And what they do when they are sick. That's as good a point as any of the transition into the precision health initiative. So this is a new project from what I gather where you're trying to actually collect information on a whole bunch of people just a random in order to try to to see if there are new connections between some of the things we're talking about other factors that you might measure and health. And so can you tell me a bit about that? Yes. And at think, it's very important what sociology and social science bring to the medical school studies because you know, precision medicine impart. At least when we think about it. Most people think about the role of genetic Sherm, and how genetics can if we know about your genetics. How can we help you either not get sick or find a way to treat you differently in a more precise way for you as a specific human? But one of the things we know is that only about ten percent of diseases are actually clearly genetic most diseases. There are hundreds if not thousands of genes involved, and so one of the things that we're finding is that the conditions in which you live can either trigger those genes or can depress those genes or silence those genes, so you don't get sick. And so what we're doing is. We're getting new information from people in the state of Indiana about the circumstances of their lives. And that means not only where they live how much they make where do they work? But also, how do they think about? Things what's the their cultural values? What did they think? Indiana should be doing about issues in health and healthcare will they listen if somebody tells them that there are genetic treatments. So all of these things are not available in most studies. Right. So how are you getting that information? I mean, clearly that's not being collected and is not in databases nine medical record. So how do you get it? Well, what we do is a what we call a population. Based study we carefully select households and so people worry right away about how do you know my name? How did you get this? Well, we don't what we're trying to do is get a Representative picture of the entire state of Indiana. And we know through social science and statistical research that if we interview two thousand clearly or specifically selected households we can talk about the whole state, you know. So if we do it, well, and we. Tend to call. This Representative sampling rather than random sampling because everybody doesn't have a chance of being selected. Right. It's it's we're trying to to pick a set of people that went put together have the same profile as the people in the state. So how are you? Where are you getting the information from how are you picking those people? So we're working with the university of Chicago who does this all the time for lots of studies. They have a whole bunch of data sets from the census bureau and other studies, and what they do is they take a map of our state, and they break it into segments, and they know about people in those segments from the census bureau, and they can figure out if they take so many households from, you know, Marion county, and so many from Scott county in so many from Monroe county, and if they if we use a particular way of selecting the people once we get to the households we can with. You know, very few cases considering how many people there are in Indiana with two thousand cases, we can talk about the state as a whole. So when you get is soon, they plug into the computer crunch the numbers, you get two thousand names. Then what then what happens, then that's the fun part? Right. So they do the they do the formal part up at the university of Chicago. But what we do is we work with interviewers who are trained, and they they are heavily trained in a set of questions, which we call an interview schedule that we have developed to get at the information that we want that we think is important to to assist, the researchers using DNA and clinical data. So that we can now add their environmental data and their cultural data, and we go to their house, and we sit down with them for an hour or so, and we ask them these questions. Call him ahead of time. Or are you just show? We send them a letter. Okay. So people should not be concerned about this. If. Received a letter. There is also, you know, if you don't want somebody showing up at your door, you can call us the the number is on there, and we can schedule an appointment, and you don't have to have it in your house. If you don't want people in your house, we can go to the public library. We could go to McDonald's shirt somewhere where it's private enough that other people aren't overhearing what you're saying. Because we were protecting your privacy at all costs, and we want all the information to be confidential because we are interested in the people of the state of Indiana. But we're interested in them as a Representative person. So once we get the information, we take all the information that identifies that person, and we put it lock it away in a file, and we use what we call the de identified data to help the people doing the genetic and the clinical research understand the circumstances of these people's lives. So you're collecting then hard biological data. All of these. Yes. Because one of the things not everybody has participated in the the school of medicine bio Bank, Indiana University has a bio Bank where they have samples and there are about eighty thousand samples as I understand it. But that's not everybody in the state. And so if we want to connect a person's health to their DNA to the circumstances in which they live we have to have all that information on one person. So you're trying to collect we have lots of biological samples. We've lots of DNA samples, but we don't obviously have all this other data that's collecting so where you're talking about collecting all this other data, and then also trying to get the genetic data. I got for me, it seems much clear that we can tell a lot by talking to two thousand people about the social data than than genetic. I mean, there's so many variants I'd imagine in the genetic data. I don't do do the people on that end of it believes that they're going to see real like data that they're gonna be able to use to to try to talk about precision medicine from the genetic standpoint or is. Much more focused on the social data that we're connecting. Well, I think I think there are two things one we know that social factors matter heavily and people's help. So for example, let's take all timers, which is one of the diseases that precision the precision health initiative is targeting. Well, it turns out there's a whole lot of research that shows that again your social networks affect how fast the disease progresses, you have Alzheimer's. And if you have good social networks the disease does not progress as quickly. There's also an thousands of articles trying to understand the genetic roots of Alzheimer's, but the problem is nobody has put these two things together because we work in different worlds. But in fact, Indiana University now has a grant from the federal government to put these kinds of information together. So at least there are groups from the social sciences and groups from the genetics that do believe. That this has a lot to tell us about what triggers the because we can have the exact DNA profile, and yet one person gets the disease in the other doesn't well what's going on. Then what has to be something else? It has to be something about their physical environment or their social environment. And those things matter, and I would like to add one thing that I think that people don't understand, which is we talk about social factors. We know that loneliness or isolation is a quivalent to smoking eighteen cigarettes a day in terms of your health. So if you think about that eighteen how many people smoke eighteen cigarettes a day now. Right. But how many people are feeling isolated totally believe that? And so if they have the same effect on your health, we should be marking that and trying to understand how that affects their DNA. So what kind of questions are you asking that data? We don't already have. Well, we're asking a lot. We're starting out by asking them. What problems are they facing? We don't know that about people in the state of Indiana. You know, we at the university we come up with these ideas from the statistics, we have from the state, and we say, oh, this is the problem. Right. But is that how people see the problem, and we also ask them? What do you think? What could we do to make better for you? Right again. I think if you are doing research to try to improve the health of population who should be talking to the people you're trying to help and see what their perspective is on what they need. And we learned this very heavily from doing stigma research, you know, where people with mental illness often suffer prejudice and discrimination. And you know, that turns out to be almost as formidable an obstacle to recovery as the disease itself because it it might might turn into losing their family. It might turn into losing their job and those things become very important for their health and. And so we really need to think about how these things work together. I think it's the case that many if not most researchers believe now that it is really the combination of what the person brings to the table, and the the DNA that they've inherited that really matters for their lives. I couldn't agree more preaching to the choir. I just I'm always fascinated by the fact that the entire medical system and our data gathering each ours completely focused on one side of that. And completely ignorance of the other. And even as we know all of this stuff matters. And that the social determinants matter all the metrics that we still measure in terms of quality and everything else in the healthcare system are almost entirely focused on not patient centered outcomes. But the outcomes that we we still think for the physicians and others in healthcare think are important. So how do we change that? Well, I can't say that sometimes it isn't frustrating to be a social science because medicine is clearly a very powerful. Institution in our society. But they start with a person having a disease and disorder, and it really is the social sciences and public health that tried to stop people from having to go to the doctor. And so medicine does a great job at what it does. They get somebody who's sick. And they try to bring them to health, but doctors are not as trained in how to keep the population healthy. And there you really need to think about the circumstances of their lives. Now, there's a great deal of emphasis now on individuals. Right. An individual should run they should drink tea. They should take to Merick. They should do all these things. But I think that's really a very shortsighted view of what helps individuals stay healthy because we tend not to think about the larger factors like income inequality like poverty, like a pollution that really has an effect on their lives. And I remember reading a study. Once that kindergarteners in Los Angeles already have a great deal of scarring on their lungs. And so are you going to blame those children for that some people? Yes. I'm with you. So the cynic in me is is look again, we do episode of episodes. I could not agree with you more. But there's you know, there's money to be made in treating illness. There's not as much money to be made in prevent to. How do we change? How do we change the way that the healthcare system is financing? I mean, these are huge questions we're grappling with all the time. But part of the the frustration is that everything you're saying makes absolute sense to me. And I just don't know how we, you know, move the three plus trillion dollar industry that exists that that doesn't think this way into moving in that direction. Well, I think it's always an uphill battle. Because quite frankly, you know, I was born in the fifties. And I I wanna magic bullet. And I think, you know, there was a deal made, you know, in the deal was give profession the profession of medicine, a great deal of power and resources, and we will take care of your ills. Now it. We know that it's not that simple. Right. That magic bullets can't cure everything. Maybe we will. Maybe we'll find out in the end that you know, mental illness is a result of a leaky gut. You know who knows? But but point is is there are people dying now, and there are people suffering now. And there are things that we know about the conditions of life that matter, and so I don't think that this is going to be a very popular view. And I think the best way to think about it is I think the recent statistics said something like the National Cancer Institute gets ten times or one hundred times can't remember was a huge number the amount of money that the National Institute of mental health gets. So it's not only, you know, you know, medicine versus people in the population in the community. But there's also a pecking order of diseases and cancer has made tremendous strides mental health has not. But if you have a, you know, a third of the fire. Finances to work with what would you expect Saint make his Clinton about public health? Absolutely. A tiny percent of of how we do. But we know that the return on investment is so great. So how's the study going? It's going. Well, I think that people right now are little hesitant about opening their doors. It's a time when well at least compared to twenty years ago, we've been doing these studies for a very long time. And what we're seeing now is people are a little bit more reticent to participate. But it's critical that they do and they should feel comfortable calling us. It's really critical that they participate because they were picked verse specific reason, and they're really important. But I totally understand people being concerned. We what we're trying to do is do it neighborhood by neighborhood and letting the neighborhood associations. No. And leading what we right now. We're doing a lot of work in Marion county, but we will be going to. Rural areas of the state, and we are working with the rural associations on that. So we're trying to get information out in different forms of media. So people know we're in your area now. And so that they should be on the lookout for and there are numbers to call in the letter that you receive saying your household has been selected call us ask us any questions. So this is unfortunately, not something that people can just decide they want to be a part of the half to receive the letter that is a big difference between medical research and social science research medical research takes people who come in the door and social science research, if it really is going to represent the community it's got to represent the community because we know there's a difference between people who volunteer for medical studies than people who don't. So if we want to say something about the state of Indiana, we really have to talk to different kinds of people from the state of Indiana. And I think it's important that if you want your views represented. The and you get selected then you should just tell us exactly what you think they have no specific dog in the hunt. We are not looking for this particular answer that particular answer we want you to tell us what is affecting you and your family and your community. We want to know what you think about it. We wanna know who are the people. How do you feel you know, one of the medical concerns? You have what do you think we can do about them who are the people that you can trust in your life to talk to about these issues all of those kinds of things that just don't appear in medical records. They don't appear in census documents. And the only way to get them is by talking to the people, and we think of this study as representing the voice of the people of Indiana. And that's why it's so important that you participate, but that use if you feel at all uncomfortable. Really, call us at have chat with us about this because this is being done with the highest levels of human. Subjects protection. And for the good of the state. We, you know, we're not interested in prying into your private life. We're interested in knowing about your health, and the circumstances of your life that is making your life wonderful or not so wonderful and providing that information to people not only to the medical school that can then use it with the DNA information and the clinical information they have. But also thinking about other projects that could be done in communities that will improve them sounds like super important work Musha the best of luck. Thank you. Well, Bernice thank you so much again, our guest Bernice Pesca Cellino, and we'll look forward to hearing about the results. This thing moves forward. Great. Thank you. Erin healthcare trash podcast is sponsored by Indiana University school of medicine whose mission is to advance health in the state of Indiana and beyond promoting innovation and excellence in education, research and patient care.