 Good evening. I'd like to what I'd like to welcome you. Let me get the microphone calibrated. Is that about right there? Too loud about right? Okay Welcome to the third in our series of the Stuart and Mary on Reuter medical humanities and ethics grand rounds Tonight we have the great pleasure of hearing from dr. Michael Pash or low Who will speak about how health literacy can improve outcomes and ease disparities? But first I would like to recognize the generosity of dr. Stuart Reuter and his lovely wife Mary on Their endowment Made among many many other things this medical humanities and ethics grand round series possible Now dr. Reuter for those of you who did not have the pleasure of knowing him was a renaissance man and a passionate humanist Who served for many years as the chair of our own department of radiology here at utesca? What you may not have known is besides being a world-renowned expert in Angiography it was also a lawyer a teacher and a mentor an Artist a Philanthropist and of course a leader and a visionary now mrs. Reuter Truly an amazing woman Is an accomplished artist and a philanthropist and She and dr. Reuter were full partners in their exceptional very exceptional life accomplishments And they strongly supported each other's efforts and passions and achievements Now mr. Reuter received her bachelor's in art history from the University of Michigan and She also received advanced degrees In higher education philosophy in higher education also from University of Michigan She also received an advanced degree in museum science from the John F. Kennedy University Now she has worked as a community volunteer in the arts and humanities since 1980 and She currently serves on the board of the Center for Contemporary Art in Santa Fe where she currently resides She is a life member of the advisory board of the College of Liberal and Fine Arts here at uts a We are most privileged to have her here tonight, and it's my great pleasure to introduce you miss Reuter Adam for that Wonderful thoughts about my husband and very nice introduction. Thank you so much I'm very happy to be here, and I'm very excited about dr. Ratner's series grand rounds for the medical humanities I Thought tonight that I would just tell you very briefly Why steward and I felt it was so important to support the medical humanities and ethics We felt that in the education of future physicians and health care workers There is a lot of science and we always wanted Life to have a taste of the humanities. We felt it was very important to Humanize efforts, so we would all become human beings sensitive to each other in order To become what shall I say well around the person a person who can communicate beautifully We felt that by studying the humanities and the ethics by being exposed to Knowledge through philosophy by learning to read the languages in the arts The arts are made of symbols. There's a lot of myth and all this is kind of Representing a hidden Knowledge that we should be encouraged to explore to understand our human history through the arts and I think as we do that as we look at visual arts Sculpture dance as we read good literature What have you in order to grasp what's in there? What's behind the human experience? We need to strengthen our senses we need to Really charge our imagination and I think as a result we start to think in a very creative way We become aware and we learn to anticipate and by doing so we Will deepen our consciousness of the human condition and I think these are very very important things to do as you become a physician Because after all you are going to deal with human life. You're gonna be a healer and a helper I would like to tell you that my husband fought carcinoid cancer for 12 years and I Don't think Many weeks would go by without Stuart telling me how important it is when you are ill that you have a physician That can kind of hold your hand a person that you can trust a Human being with knowledge of other human beings that will Help you will guide you Will understand what he or she can ask from you and Be perfectly honest what he or she can give you A Stuart live progressed and it became very very clear that science no longer could help him What's really helped him was this? human warmth and Moral support the importance of that is non-descript Thank you. Thank you very very much miss Reuter It really is a pleasure that you could join us this week this this evening and to hear those words I'm glad I don't just speak too much after you frankly The writer endowment Supporting tonight's event is but one of their many legacies Both doctor and this Reuter were early and are continuing supporters of our Center for medical humanities and ethics and our department of radiology I would also like to thank our co other co-sponsors for the event this evening The Center for medical humanities and ethics and the Department of radiology here at utesca the San Antonio health literacy initiative The patient Institute and the Bear County Medical Society Thank you all a Little bit of administration here for those of you seeking CME and ethics credit, please make sure that you sign in Pick up. There are two forms. There's one form where you need to write your name and email Legibly, that's not easy for me, but hopefully you can do it Turn it back in to the desk up there There is a second sheet which tells you how to obtain the CME credit It takes typically two to four weeks, but it will show up on the website, which is on the sheet CME dot utesca dot edu It is now my pleasure to introduce Dr. Michael posh or low Dr. Posh or low is associate professor of medicine at Boston University School of Medicine He's a general internist and a nationally recognized expert in the field of health literacy Dr. Posh or low is currently a co-investigator with five funded grants That examined health literacy He is a member of the project red research team a nationally recognized model to re-engineer the process of hospital discharge to improve the safety and Efficiency of transitions of care His work has brought attention to the role of that health literacy plays in racial and ethnic disparities Self-care for patients with chronic diseases end-of-life decision-making and Ethics of research with human subjects He is the associate program director for the Boston University School of Medicine General internal medicine academic postdoctoral fellowship program In addition to his presentation this evening He will be providing the keynote address at the San Antonio health literacy initiative annual Texas health literacy conference to be held tomorrow at the la quinta here in the medical center And I encourage all of you to attend either all or part of the conference as you can break free Welcome. Dr. Pash or low. It's really very much not much an honor for me to be here and And to to talk with you today about this topics I hope by the end you can see that there's really a very good synergy between Health literacy and the work of dr. Reuter and his life, and I want to start just with the following I did not know dr. Reuter, but I really have enjoyed reading things about him And thank you for that comments about him really I I found it very moving My impression and people who knew him hopefully will agree That he really lived at the nexus of innovation and excellence embolization and ethics contrast agents and consent angiography and art and My charge this evening is to challenge everybody challenge all of us to be inspired by his example that we can also bring excellence to our work and I hope in particular ways relating to some of the themes that I bring up but you have to find Whatever motivates you and just bring excellent to that So the first thing you know you get a little bit of privilege a little bit of license If you're told to talk about humanities because that means a lot of things to a lot of people And so I want you to look at this picture of dr. Reuters and think of where you are on this picture If you're a clinician, where are you the whole? milieu of all the forums and all the time pressures the different contracts all The patients that come and go all those things Where are you? Are you on this picture? Who who are you in this image? Do you aspire to be a clinician of some kind and Imagine yourself here and then think Where's the patient? Where's the patient in this image and I think really from your comments you have to find the patient That's our job. We have to find the patient one way to talk about this topic is The following join with me. I went to college. You went to college my partner went to college my parents went to college Okay, not everybody My grandparents went to college all four of my grandfathers and grandmothers all went to college My wife's went to college her siblings went to college her parents went to college and her grandparents went to college This is a tremendous amount of educational privilege What we have in this room is a tremendous amount of educational privilege One thing you can say about this whole field of health literacy is the health care system has been created By people with tremendous amount of educational privilege But often neglecting the people who don't have that and So part of this message is to say how will we? Remove literacy barriers from the system so we can actually create a system That people can use that people can be empowered by So let me back up. What is literacy anyway? Literacy is really a functional concept. It's not kind of an abstract thing it's a These in a domain we can legitimately talk about the literacy skills it takes to fix a car or to fix a computer Some people say there's such a thing as fashion literacy. I don't have it. I Walked up my wife tells me what to do. I try to do it That's how it is. So there's many different kinds of literacy. Basically. It's all contextual. It depends on what you need to do Now there are some basic skills that make it easier It's easier to fix a car if you know how to read but there are plenty of people who do it without having those skills It's easier to To be a doctor or to do anything if you have those math skills But there's a lot of things that people manage to do anyway But those basic skills reading writing arithmetic They do make things a lot easier, but life is not kind of kind of a reflection on what is this? Sonnet mean that's like kind of a college view of literacy. Life is actually things you need to do So there's no one literacy. It's all contextual The demands are contextual and in healthcare context the question is what are the challenges? What are the skills? What are the things that the person who is a patient that they need to be able to do? This is the definition the official federal definition for health health literacy Maybe I can have a reader. Is it still on? Come on. Come on. Come on. This is the definition the degree to which individuals have the capacity to obtain communicate process and understand basic health information and services needed to make appropriate health decisions Excellent. Excellent. Thank you so much. I hate that definition. I Don't like this and I'm going to point out why you I'm going to point out why there's some things I think that are distracting Inappropriate about this definition. Let me point it out So one thing I told you that it's contextual. So I don't think the concept of basic Deserves to be here because what's basic to you could be irrelevant to another person could be absolutely critical to another person, right? If you're faced with the decision of do I take chemotherapy for this drug for this situation if you're faced with this situation I have a patient right now who has is being is offered coils to Her brain You know or wait it out You know, there's some numbers we can throw at them We can say you have a 2.6 percent chance of it rupturing spontaneously each year for the next year after your life And you could say oh, but there's about five to eight percent chance that you're gonna have a major event from this experience You know that that's completely irrelevant to most humans, but that's Critical to that person and they have about they have to figure that out and there's a lot to work through that kind of a decision, right? So I would say we're gonna talk more about context But what's basic to one person is just irrelevant to another person is critical to another person I don't think it deserves to be in there in the definition. Another thing is it's not just information and services It's also skills. There's a lot of skills in the healthcare context If you have asthma, it's actually really really really good to know how to use an inhaler And it's not like this. That's not an inhaler, right? I mean it's very frequent. We say to patients I want you to take two puffs every four hours and if you actually look at what they but people do it's like That's not two puffs, right? So you need to actually see what people do understand what they do and Figure out if they're doing it correctly That's a skill critical skill of health literacy for someone who has asthma But maybe irrelevant to a lot of other people with diabetes You need to know how that glucometer works. Who's gonna teach the person how to use that glucometer? I mean most of the time the internist just says, you know, blah blah blah blah check your sugars How's that work? You know what who's actually gonna teach that person how to use that machine? It's like mysteriously gonna happen. No, it's actually something that people need to learn how to do and don't be shocked That the person doesn't do it if it's hard to do if you don't know how to do that Many other kinds of skills are needed So there's the next thing that I don't like about this definition is it focuses on the concept of appropriateness Appropriate to whom? You know if I tell the patient I want you to take this pill and they say look it gives me a stomach ache I don't want to take this pill. So do I do I rate them pat badly because they decide not to take it? Appropriate know who has the power to decide what's appropriate the concept is not about appropriateness The concept has to be about informed empowered. It's not just you must do what the doctor says We the concept of health literacy has to be about informed decisions and actions next issue It in orderly focuses on the individuals and until now you might have thought this whole field is someone having a problem with reading or someone having a problem with Math or something like that, but that's blaming the victim That's blaming the victim if I say it's contextual if I tell you that health literacy has to be considered in a conceptual way Then you also should say it's not just someone's skill level, but it's also Why do we have an inordinate amount of jargon? Why do we have clinicians who have very little training and how to communicate with patients? So there's a lot of things in here and There's a lot of things that relate to this, you know If you're doing procedures you're involved with consent all the time I know this was an interest that I shared with dr. Reuter and this is actually complicated stuff And it's very easy to To do this poorly and people don't understand what they're getting themselves into very easy very easy You know we're we're going to we're enrolling millions of people into insurance That doesn't mean that people know what that means or how to use it There's actually a lot of challenges. There's a lot of challenges and there's too much information It's actually very hard to be a patient. There's never enough time We ask people to do very complicated tasks when they're not at their best They're sick and they're in pain, you know And now I want them to calculate their ten-year odds of having a spontaneous rupture of their aneurysm And they're just you know It's the scary and they're sick and it's not very easy and there's more and more burden on patients There's direct to consumer advertising, right? So we have all these ads on TV people come into me all the time and they say Can I have that side effect? Can I can I have that side effect, please? Okay, come on. I got a few laughs, but I know all of you know what I'm talking about And anyway, so there's also direct to consumer genetic testing I mean when I talk to patients about genetic issues, it is really astonishing how big a gap there is in comprehension and and Participatory decision-making this is something that's very challenging, too I think it is a hallmark of progress That we don't that we've assumed that we pushed away paternalism as the dominant modal mode of how we interact with patients, but don't but make no mistake It's a big challenge. You know if I say up to if I say to a patient I Want to talk with you about whether or not having a prostate blood test having a PSA I want to talk to you about whether or not this is a good decision for you right and at the end of a conversation about false positives false negatives biopsies in this and that they're like I Don't I mean you went to medical school? Should I should I have this? I don't know if you know if I should have that test you're not and You know that's fine, too You know sometimes people say to me did you have that prostate test and then you know That's a kind of a slightly different conversation and you could decide you want to go there But if the same person asks my colleague Jane if she had that PSA they do not understand what's going on Okay, so you got to figure out what the bill understand now in health literacy. There's a lot of different concepts There are some basic literacy skills like you know being able to read stuff And but it's also a lot of self-care things that are very specific to health care and also very specific to health care in the United States You know the bottle the pill bottle looks this way in the United States It does not look that way in the rest of the world in fact There's many different ways people all over the world get prescription medications Is it a surprise that at the bottom it says you know refills and then people come in they don't understand what that is That's not actually not how it's done in many many countries It happens to me all the time that I say to people how are you doing with that metformin and they're like I'm fine. I finished it That's not diabetes care. That is not that's not legit That's not what we're talking about and by the way patients frequently have no idea that they're on the metformin and the Radiologists want to know that they're not taking it for three days or whatever That's just first convinced the other clinicians that that's important to them now convince the patients that they even know what you're talking about It's very it's a lot of challenges. Anyway, I'm gonna move along So how common is this issue low-health literacy? How common is this? I want you to some people have pens actually I'm gonna not call on you I promise but I do want you to write some things down just to commit mentally on what this is So how common is this thing low-health literacy? Well, you should say to me first Well, how are you defining it? How is it being measured? So I'm gonna give you what I'm gonna give you is Data for now. I could give you data from other surveys as well But data for now is gonna come from the NAL which was done in 2003 I have plenty of other dates you but this is about two to twenty thousand Households visited and people tested adults tested and in this survey They broke people up into four categories below basic basic intermediate and proficient if you had below basic Literacy skills on this test I'll give you an example if someone said to you here's a bottle and the bottle says take two pills three times a day and The task is how many pills you need to take out of this bottle for one day's worth of medicine? If you're in below basic you typically would not get that question correct Okay, that's just a framing of like what we're talking about here If you're in basic you typically would get that correct, but not test not questions that were harder Okay, so this is the United States of America So what what if you have a piece of paper just I won't call you just write down what do you think that's gonna look like if I break this up by race and ethnicity and This is one of those messages that I think is very very important that I want you to focus on from this conversation Because I think this health literacy conversation will end up being a key to Ameliorating disparities in the United States. Okay, so on the on the next slide. It's gonna be the same data broken by race and ethnicity Ready, will you write something down? Okay, you saw you saw here all adults 14 percent and below basic 22 percent in basic, right? So you do not need higher math to look and see that this is a dramatic phenomenon This is a very very big phenomenon, but dig deeper By income how far you stay in school? Okay Stay in school Okay The next couple slides. I'm going to give you data from another another source What this is from the national assessment of adult kind of of childhood competencies These are this is test done on kids in 12th grade in high school. Okay. This is a another source This is from the NAEP There's supposed to be another round of data coming out soon. It's not available yet 2015 data fine reading The next slide is going to be for math is it going to be better or worse? Okay Now when you look at something like this You have to really To really try to focus what this means in health care. Okay, what this means in health care, you know I gave you an example of 2.6 percent chance of aneurysm rupture each year for the next 10 years What are you talking about? Patients frequently do not understand this. Okay We did a study. I did a study where one of the questions was You know, what what what's the likelihood that you're going to develop cancer in the next five years? And then we asked people what's the likelihood you're going to develop cancer in the rest of your life Okay, no matter what numbers you give if you think your lifetime Likelihood is higher than your five year likelihood. You don't understand the question Right. I also asked them Fair two-sided coin You flip it a thousand times. What's the most likely number of times it's going to come up heads Now there's only one right answer if you say I think it's going to be 477. It's not the right answer 40% of the patients at my hospital got one or both of those things wrong either the coin flip or the prevalence kinds 40% And so we just so what patients get what patients understand from us is not the numbers They understand our affect They they interact with us and they see this person seems like they care Or not this person seems like they're a good person or not But largely speaking our interactions are not happening through a cognitive lens Largely speaking when you're talking about this kind of a phenomenon They're happening through an affective lens And so you have to think about what is the affect that I'm giving off and what does that mean? And I'm am I being appropriately empathic in this scenario am I being trustworthy? and You mentioned at empathy and somebody else mentioned empathy before and I really I did a study once where we listened to over 600 outpatient encounters between doctors and their patients and we listened to audiotapes and One of the things we did was listen for jargon and stuff like this But we also listen for empathic statements How frequently do internists and family medicine doctors make an empathic statement and he guesses So it turns out in our study There was one empathic statement for every three to four visits and This was a study where we up where we uploaded that we had a high selection for people with high CSD nine scores So there's a lot of depression and anxiety for the in the patients basically what it means is that doctors are Kind of mean to the patients Kind of mean literally you can listen to statements. They're like people taking a family history It's like oh, tell me is your father alive any medical problems. Oh, we owe you dad. Yeah, your mother You wouldn't talk to that you wouldn't talk to a person like that You would not talk to a person like this and doctors talk like this all the time. Where did they learn that? They were not like that when they went to medical school. Okay now in I just want to point out that there's there's been Fabulous improvement Fabulous improvement in this high school having a high school diploma or a GED has been massively improving in the United States from 1980 to 2011 Big improvements, but still massive disparities and then the quality of the education That's a whole conversation to be had But I'm gonna move on because I want to focus on other things I did some other things showing that this is like very very common in the health industry. Okay, fine So why does this matter? I want to focus a bit on why does it matter that there's these? loads of people 30% more 90 million Americans with low health literacy Well, it turns out that There are many many examples where this literature that's emerged called the the literature on health literacy Has shown that having low health literacy is Linked to all kinds of bad things all kinds of bad things. I'm just going to I'm just going to go on to one example, which is the example of mortality the final common denominator and Really we could spend a couple of days just going through all this literature because there's a lot there now in this study. This was Elders they were 66 years old to get into the studies about 3000 people and you can see they were observed over time and the hazard ratio This is well controlled. This is controlled for blood pressure controlled for smoking controlled for Charleston it is controlled for Diabetes like this is amazing that you would have a hazard ratio of 1.5 to over the course of 80 months for death That's like adding a whole chronic disease to a population and say carry this around Okay, so the question is going to be what would be the connection? What possibly would be the link for someone who's 66 that they would die more likely over the next five years? Well, what's the causal pathway? How is it going to work that low health literacy would link to all these bad things and what's recommended these studies is that they People have tried to control for important confounders. You never do it perfectly, but they've tried, okay? And so here's my simplified conceptual model. Thank you very much. I got a good short all in that one okay, and Besides the fact that you know you can learn how to do things with PowerPoint This is I'm going to try to focus on a few things here. I Want to set aside some very important things if you're if your barrier is Neurosensory if you have a problem with vision The intervention is quite different And so I want to set that aside just by the way What's the leading cause in the United States of America the leading cause of having vision so bad that you cannot read? Leading cause I heard diabetes. What else? hypertension Mac Djan anything else? Glaucoma the leading cause in the United States of America strong as a kind of the world is refraction needing glasses In every state in the United States if you are functionally blind The glasses can be paid for The doctor has to say that you are blind because of this and then they won't you won't have to pay Now what's the second leading cause in the United States is? Cataracts in every state you can have your cataracts paid for if you're functionally blind because you're cataracts now I love cataract surgery It's it usually works so well It's like one of the things that I love to send people for they come back Really with the life improvement, but there it's it's a little more complicated than this You know if I couldn't see I would be running I need some I need to be reading all the time. I have so much of my world is text So there is an overlap between people who have not gotten the glasses have not gotten their eyes fixed and Higher rates of low literacy, so you have to think about why is it that this person? Still three years into whatever the issue is hasn't gotten their eyes But there's a lot of barriers and there's a lot of perceived barriers that are not even real So we have to figure out how to help our patients So let's set aside these things if your barrier is memory the intervention is different Okay, let's just set this aside now. There's other things to set aside to And there's also interesting and sometimes very very interesting and important interactions You know if the if the challenge is a language There should be language appropriate services and this is a whole conversation of How and why and when and where why do we fail so frequently about having language appropriate services? This is a huge topic that I think is going to be It's really underplayed, but Let me set that aside and we'll talk maybe we're going to chance to talk about that more all that goes away. Oh It's a shame. Okay, so what I want you to point what I want you to see is there's three big boxes over here and In each of these boxes, there's two sections so The first big section is called access to utilization of care so there you go and What I want to Come up what I want to impress upon you is I think it's very important that in each domain Don't just blame patients Also think of the system and how it's constructed to be a support or not so Why is it so difficult to apply for Medicaid? Why is it so difficult to get the benefits that you're eligible for? Well, there's different reasons why but the forms are really complicated Most people are they don't it feel are not even able to fill them out themselves They're filled up by the health system, so they'll be reimbursed after a acute episode So like this is that's not using the systems appropriately. That's not using it for prevention That's not using it for anything that you would look at that and say oh, that's a good use of our healthcare system That's using it for paying back the hospital afterwards after you had a cute event that should have been avoided in any way So why is so you can't just say old patients have poor navigation skills Why is it so complicated to get through the system the next kind of domain and I don't want to get too deep into each of these But just at a high level is how patients interact with providers So when a when you read literature that talks about patient self-efficacy or empowerment fine But at the same time say well, what is the efficacy of those clinicians? You know, what is the empowerment of those clinicians to be able to talk about those things effectively? You know, we frequently talk about knowledge attitudes beliefs Yes, that's true about the clinicians as well. Just don't don't focus too much of the patients They deserve per person focus. So does the system and then a lot of care is self-care It's very hard to remember when you're in residency because so much the residency happens in the hospital But the vast majority of those patients lives are not with us here in the hospital the vast majority of their lives Is at home it when taking care of themselves hopefully and hopefully doing a good job But we don't make it very easy. There are over 60,000 health apps But they're only but they're not really used they're not very effective They're made for the digerati and even us even when you put I bet we go around and look at your health apps You probably touched them four times and don't look my heroin addicts are not using Fitbits Okay, whatever you want to say, I could probably go around and find a few Fitbits on you all but You know, it's probably not meeting the target of the need I don't have a single patient with it with an a1c over 10 12. That's interested in Fitbit Okay Okay, let me let me go on so I want to now focus point out some other themes that I think are critical in this conversation Another reader some day you'll act like you understand. Yeah, you know, we do this thing in health care. We shame people We shame people into silence. It's astonishing It's it happens in all the different ways that are they're very difficult to to get by, you know Some doctor at some point in someone's life Was walking out of the patient's room saying any questions leaving the room and That will make a barrier to all of the other people who come in the white coated time space continuum in the rest of their lives You have to fight against that To be able to to be able to overcome that I'll give you there's so many examples as I had a patient I think med rec includes minimizing out of pocket expenses. That's a whole kind of conversation So I had a patient where I said to him hey What did you have to pay for these medicines and he said oh, you know Glad that you brought this up because I couldn't get the medicine They wanted like 250 bucks and I was surprised because I didn't think it would cost him that much So while he was there we called the pharmacist and we figured it out It was like 15 bucks because we have a very very well supported system In Massachusetts anyway, so I said to him where did that number 250 bucks? Where did that come from 258 dollars? Where did that come from? He said it turns out that three years before He had been discharged from a hospital He went to the window Some resident had offered had ordered an antibiotic that was not covered by his by his plan He was asked for 258 dollars He left in shame He had not gotten any medicine for three years He had been my patient in the clinic A1C through the roof How are you doing with your medicine? It's fine Okay, so we shame people in all kinds of ways Everyone, you know there's all kinds of shames that we do Some of it is about literacy Some of it is about money All kinds of shames that we shame people We have to find a way past that Everybody has questions Everybody has questions If you do not get to the questions, you have not done your job We'll talk about that a little more What is this? You have to give it to somebody else What is this? What is that? Where is that? I have no idea Okay, give it to somebody else Is that Los Angeles? That's LA, that's LA There you go What's the point of this picture? The point of this picture is to say Health literacy frequently travels with other vulnerabilities I told you that what recommends the research literature Is that we've looked to control the effects of other phenomenon To identify and isolate the independent phenomenon of health literacy But human beings are not regression analyses You want to do something in the world? You have to find people where they are You can't say, oh, I'm going to intervene on this part of you Stand like this, and then it'll work No, you have to find people where they are And understand the nature of their other vulnerabilities as well You can't pretend like there's no language access barrier You can't just say, you know, because of that You have to find people where they are There's no language access barrier You can't just say, you know, because you have the interpreter there Which is great That doesn't mean that there's no health literacy barrier in the other language So you have to figure out all the other, all the collective vulnerabilities And figure out how to manage that I'm going to give you another, this is a complicated slide Okay This is from the PIAC Over 160,000 people surveyed in all these different countries The United States is all the way at the bottom Okay, that's not good And let me explain what this means You get a blue diamond, a blue arrow top That's your average literacy score If both of your parents went to school past high school Both of your parents had at least some college And that's what you got You get the blue arrows, right? If one of your parents went past high school There's the white diamonds And if neither of your parents went past high school Those are these black checks, right? What this means is in the United States We have an educational caste system We have the lowest amount, we have the lowest level of social mobility For educational achievement of any of the countries in this system This is not our self perception This is not how we think of ourselves We think of ourselves as a land of opportunity Yes But If you look at this You have to say In comparison to any of these other countries This factor is more important here than other places In the United States, it's true in every country That your educational attainment is massively influenced by your parents You will find people who will break away from that You will find people who are the first people who go to college in their family That's awesome, they are awesome people And then you can empower other people to do it too But overall This is a yoke that we wear in this country This is connected to the fact that we pay for our school districts In part by local property taxes This is part of how we have massive disparities between different school districts If you just think about what this means Why would it be that in all these other places You have more social mobility for education It's connected to the overwhelming cost of education Alright, that was my soapbox Let me go on to the set Now if you want to go into clinical care I think there are some very important messages that can come out of this One thing is I call universal precautions I do not recommend screening people for low health literacy I don't think it's useful I think instead we should flip the default Instead of waiting for the patient to say Hey, I don't understand that I think you should say It's my responsibility to confirm that the person understands If you have something critical that you need someone to know Then you have to figure out that they know it Where did that might go? Alright, if you go into like a McDonald's or something And you say, I want fries and a Coke What do they say to you? Oh yeah, they ask if you would like to upgrade Super size Okay, after they try to increase the sale What do they say after that? They say that it would cost less if you Oh, they try to do that too That's like a struggle They try to sell more But at some point They confirm the order They say that would be fries and a Coke They do this for a number of reasons But essentially because they understand That it's a service economy And you're going to be unsatisfied If they don't get the order right Okay When I was a kid My parents Just made it clear that I was going to be a doctor It was actually very unsettled They would say, oh the world is your oyster You can do anything you want You can be a cardiologist You can do anything you want But they had this idea That being a doctor was something But I'm telling you now This is part of the service economy You actually have to do the job right If you want to do the job right And part of our hospitals are now already being Scored on satisfaction That is actually already being built in The idea that patient satisfaction Would be related to compensation Is astonishing But it means That you have to do the job right And you have to figure out how to do the job right And if you want to do it right You have to confirm the order If you have something critical That you want the patient to do Check on it We're talking about taking this medicine You said you were going to do it Great, tell me How are you going to take this medicine Tell me how are you going to do it Confirm the comprehension Of the necessary complexity And massively increase research For patient education The whole concept of the medical home Whole another conversation But it needs to be a home of education Patient education and empowerment So I say to people I don't say to people anymore I try my best not to say How are you doing with the medicines Because if you say everything is okay With the medicines It's like ships passing in the night You will not get any information You have no idea until you go in Okay Then you know that it didn't happen I'm not a GI guy So you have to find it So I say to patients When I talk to patients They say their A1C is over 12 or whatever I say are you satisfied with your care With diabetes Now if they say yes Something is really wrong If they say yes I'm pulling out all the stops I'm going for the guilt Look you're satisfied I'm going to go home worrying about you Use anything you can You're satisfied But I think this is actually Really not good for you This is the way towards Losing your kidneys Losing your erection That gets started You have to find the person Where they are and you have to figure out What the message will be That will connect with them Leading cost I also told you I asked people how much does it cost Follow the money People are ashamed about this But you have to be able to do it You have to be able to do it comfortably If you can't ask about this You're just fooling yourself You're pretending like that doesn't Matter Or it's not a barrier in people's lives Of course it's a barrier in people's lives And the thing is If you say to a patient When you went to the window How much did you have to pay For this medicine If they cannot answer this question They did not get the medicine If you took the money out of your pocket And you paid for it You know the answer to this question Okay it doesn't work every time Maybe the knees got the medicine Okay it doesn't work every time But it works great It works so much better Than many other things we try to do You have to find ways to communicate With patients that work At every single encounter Every time you're working with a patient You have to figure out What is the critical thing I need them to understand And figure out how to confirm Their comprehension You have to do it in a way That's not loaded with jargon It's not funny It's not funny The jargon is a very dangerous thing And it's very hard to find Your own jargon Let's play a game I'm going to say Anjana you say Okay I'm going to say benign You say It's not cancer Stop saying benign That's not good You know it came out benign Is that good or bad The immunization Okay how about this one Hypertension You have the hypertension You still have to talk to the person To understand what they think that means The whole chronic disease concept There's a lot of misunderstanding It's like well it happens When I'm yelling at my kids And I have a headache There's a lot of misunderstanding Your test is negative Diet is just a four letter One syllable word But it means something special In a healthcare context If you say to a patient If you say to most people Humans How are you doing with your diet I'm on a diet I said to a guy recently We talked about Changing how you eat His A1C's through the roof I talked about A1C He said oh I'm doing exactly What you said I'm not having carbs anymore I said really What did you have for dinner last night And he said Oh no carbs I said fine what did you have He said oh I took a pound of butter I put it in the pan A pound of ground meat And a pound of calamari I used to eat that On a pound of spaghetti We're not done We're not done You know you have to You have to find your jargon I said to a patient once We talked about Not eating red meat anymore How's that going for you He said no problem I cook it all the way through Okay you have to find your patient You have to find your jargon You have to find your jargon I've done a lot of research About how patients Are discharged from hospitals We've done all kinds of things Focus groups and different things Three focus groups into one project Where we're showing them New information and stuff like that There's a guy in the back of the room He said oh this is good I like this project This is good but I'm confused What part of the body is the discharge coming from You have to talk to patients So we call it the after hospital care plan You have to talk to patients And figure out what's going on So I'm not going to spend So much time on this But this is a model I want Everyone to learn about This is called closing the loop You have a new concept You want to confirm the patient Understands it You say to the person Tell me how you're going to do this For example I want to make sure I explained everything clearly But on you You're supposed to be the communicator To teach in this I want to make sure I explain things clearly Tell me how you're going to Show me how you're going to use this inhaler Right now Show me how you're going to use this inhaler And then you can give them feedback About the things that they got right Or didn't get right You can focus the feedback On the things that they didn't get right And then you have to close the loop You have to say it again Show me now That you get it right So here's an example Where's the mic You have to pass it to somebody else Okay There's a reading moment Okay So there's a lot It's coming up There's a lot of things That are very complicated in health care One example is public health I mean Is vitamin E good for you or bad for you? Okay So the messages are too complex We have to complete with sex, drugs, and rock and roll We're pushing like metformin And they have like all this other stuff Like how are we going to compete with Snickers bars? Okay We have to do a better job But it's going to take work The information changes It's complicated stuff It's massively Just grossly insufficiently targeted That's a whole other conversation There's all kinds of issues that we're not dealing with yet About language and literacy and culture and context So here's this Can you read this one for me? Read it The nation needs AIDS Free men and women Let's protect ourselves Okay So if you're driving down the highway Okay So anyone else want to read it? Give a hand to somebody else Read that Do you want to try another reading? A different reading maybe? Try it again Just read it The nation needs AIDS Free So what I want to point out Anybody get it? Anybody want to read it differently? The nation needs AIDS free See the little hyphen over here? The nation needs AIDS free Men and women Let's protect In a lot of ways you can go wrong It's very easy to screw this up So I want to move on to the next part of the talk Which is that I think that I hope Hopefully that I've shown you That health literacy can work towards Can influence health outcomes I just showed you a slide with a lot of things on it But hopefully you believe me And then also hopefully I showed you That there's massive racial and ethnic disparities In health literacy and literacy But the question then is how would it be That differences in health literacy Would end up causing health disparities And racial and ethnic health disparities I'm going to give you a few examples So here's an example from a medication adherence project I was involved with This is a small cohort of people with HIV 204 patients with HIV And we noticed and there was a paper written Saying that there was lower medication adherence Among the African American patients in this cohort And okay you say Okay I want to do something about that But I would say wait a second Look at the data So what happened was In the analysis when you did not look at health literacy African Americans were 2.4 times more likely To not be adherent But if you included health literacy There was no race effect It wasn't a racial phenomenon It was a health literacy phenomenon In the final model when you controlled For health literacy The health literacy was the only Significant independent predictor So what does this mean That means if you want to do something About this problem You have to consider this factor Health literacy barriers It means that if you started Creating an intervention that was About say cultural company care You'd probably be barking up the wrong tree Here's another example This has to do with end of life decision making I've done a suite of studies In this space A couple dozen studies in end of life decision making And there's a literature that purports That African Americans want more aggressive care At the end of life And I always said to myself Really I mean how are these studies done Are they done appropriately Do they explain things appropriately And do they test for literacy And use that in their analyses So what we did was In this particular study We have done others as well We asked people about their end of life preferences Before and after a video An educational video And in unadjusted analyses African Americans wanted much more Likely to have aggressive care An odds ratio of 4.8 That's very strong More aggressive care wanted In unadjusted analysis But in adjusted analysis When you put health literacy into the model The race effect went away It wasn't there In unadjusted analysis The health literacy effect was massive And in final adjusted analysis That was the main dominant independent predictor For wanting more aggressive care By the way, after the video There were no racial differences And there were no health literacy differences So, you know, that means That we cannot skimp on the educational agenda We have to engage people To make sure they understand What we're talking about If you think it's going to be like on TV Where some beautiful person comes And does like this on your chest And then everyone's smiling By the end of the 30 minute episode That understands how the hospital actually works That's not how the hospital works There are very important themes here There is a very important underdeveloped theme In cultural and cognitive care But that can't be in contest With our educational agenda We have to have both And we can't have both I'm going to give one more example A paper that I read just this morning Which had to do with radiology There are so many radiologists in the room I thought, oh, I was actually told Have a radiology example Okay This is just an example This is not in the radiology department But it's tests ordered for radiologists So this was 504 caregivers of children And in this hospital The black children were much less likely To get any radiologic testing After controlling for various things And it turned out that When you control for literacy of the parents That this was not a phenomenon of the blackness It was a phenomenon of their health literacy So there was an interaction So this effect of not ordering tests For kids was really a phenomenon Of the parents who had low health literacy This is parental health literacy in this scenario So I don't want to go too far into this I want to just give you some examples Of some of the work we've been doing At Boston Medical Center To try to ameliorate these issues We have done a series of projects now With an animated character That we call embodied conversational agents Here's one example of an animated character This is a character that we used To teach people about things they need to learn When they're just charging from a hospital About their medications and follow-up appointments And things like that And the character interacts with patients In ways that, you know, it's software You can make it do whatever you want, right? So it can be as much social talk as you want It can have as much empathic comments as you want And it can adapt based on what patients want So if patients start asking questions And they're more interested in empathic issues Then it can go there farther And, you know, it's in ways that clinicians tend not to do If you listen to clinicians Even when empathic topics come up They shut them down When spiritual topics come up They shut them down But the character doesn't have to be like that It's just software So I'll give you an example I prefer Louise She's better than a doctor She explains more And the doctors are always in a hurry We train people to think Patients to think that our time is precious And their time is nothing We train them that way So the idea that sitting with an animated Computer character could be satisfying Is really a bad reflection on our culture In my view And yet, I think it can help It was just like a nurse actually better Because sometimes a nurse just gives you the paper And says, here you go And Louise explains everything Here's another example We did another study where this was a character To promote walking in the elderly People said to us You cannot give a computer to old people Old poor people in Boston The computers are going to be lost, stolen or broken They don't know how to use computers Well, we did this trial Not a single computer was lost, stolen or broken You can make an interface that will work The average person in this study Was a 74-year-old African-American woman Who had never touched a computer in her life Okay? You can make it work Here's an example Like the character talks And then the user responds back with a touch screen In this study We... This was like all of five years ago So if you remember there was like No Bluetooth pedometers back then Now like everybody in the room Has a pedometer in their pocket So back then in order to make this work We had to have an actual pedometer And then in order for it to talk with the character We actually needed a cable It's insane But that's what we did And then the character would know how much steps you had And so the character could talk with you about that Help you set goals And what happened was People walked more We took them away at two months And the effect waned by 12 months So it wasn't like a home run But I tell you The average user interacted And had what we regarded as a full interaction 31 out of 60 days So you try to do a behavioral intervention Where people do your behavioral intervention Half the days It's actually quite optimistic It means you can do these things You can make interfaces that people will respond to It turns out that some of these topics The empathy The social talk Are much more embraced by people with depression Or with low literacy And we give people surveys Like how satisfied you are All kinds of things But we also ask them questions like Do you like Tanya? In this character with Tanya Or do you feel that she trusts you? Okay? It's a computer On a Likert scale between one and seven The only answer is four You cannot give me any other answer Does she trust you? But nobody gives us fours Everybody rates it highly And that means that people are willing and open To having these kinds of engagements The only answer is four all the way across The character does not have any emotions for you It's a computer But people get into the conversations Get into the whole concept of it So I'm going to end with this And I want to ask what questions you have for me If I don't generate questions Then I'm going to tell you other obnoxious things With disconnecting with people And expecting experience There are different ways of being a clinician I find it more satisfying life in clinical care When I can elicit the person to be there in the room And that I can also be there in the room Now it's not my sob story But if I don't make my patients cry I'm not getting to the truth In fact I would say that on an average clinic day If I touch my stethoscope More than make a person reach for a Kleenex I'm not getting to the truth The stethoscope is mostly a totem of our power I mean it's useful now and again I don't want to disparage it too much But ostensibly that's placed there to say I'm the boss Set it aside and get to the Kleenex And then you'll get to more of the facts of the matter You said that clinicians tend to shut down the conversation And spirituality comes up And emotions come up What do you attribute that to? Do you think it's just a lack of patience Or do you think that sometimes we don't want to influence Or share of ourselves Or even try to... Some people are even scared If you say the wrong thing I mean it can lead to a lawsuit maybe You never know But what do you attribute that to? I do think that there's a lot of... I think there's a phenomenon in the culture To not want to go there for a lot of people I'm not advocating for the clinicians To start talking about their spiritual journey And that's not what I'm talking about But we have a new grant We're not in the field yet We're still designing this Where we have an animated character For patients with advanced illnesses And the idea is to try to identify Unmet palliative care needs So we've had some pilot work already And patients actually are very happy To talk with the character about their spiritual needs I think that what happens is For many many things Patients send signals That they're hoping to talk about one thing or another It could be many types of things That they feel stigma about Patients will send you a signal That they want to talk about addiction Are you ready to hear it? Are you open to talking about it? Patients will send you a signal That they're dealing with depression or anxiety You have to be open... You have to be able to see it You have to be able to appreciate what's there And you have to be able to engage people with that And people do the same thing about Spiritual needs too I think I'm kind of like a lightning bolt for this Because I'm willing to talk... I'm willing to have people talk with me About these topics But I think those messages are there all the time And it's just a matter of if you're open to that Now I think that we have to be very careful though The clinicians are also incredibly pressed for time And so the question is how to do this well And not neglect your other patients And be able to maintain a system So we have to make space for some of these things There's a lot of challenges Clinicians are under a lot of pressure I don't want to get people like I'm in a bashing spot about that But people are also shutting the patients down And so we have to figure out how to connect to people How to let them express themselves I think we'll have a more satisfying life as a clinician If you look at... There's a series of studies done by Deb Roder Out of Hopkins Where she looked at satisfaction after appointments By the clinicians and by the patients And sometimes you see the clinician was unhappy And the patient was unhappy Sometimes you see that the clinician was happy And the patient was happy But she's done some work where she's looked at When there's a disconnect When the clinician is happy And the patient's unhappy or vice versa And there's several themes in there One of the themes is low health literature The clinicians like quick visit The patient had no questions Awesome The patient was like I don't know what just happened I don't know what I'm supposed to do And what was that? So there's other themes like that And I would say that it's good to be attracted To the situations where there is that disconnect Because then that can get you thinking About ways to improve care Thank you So I think there are a lot of things So I think there are a lot of learners here And you know the AAMC The American Medical Association Of Medical Colleges They are encouraging all active learning And taking away all the learning From the professors and the teachers Thinking that active learning is better than Passive learning But in my experience What all these things we are talking about The students or the learners in general The professors, doctors, physicians Physical therapists There are a lot of these things Which are not described in the textbooks To describe how you actually show empathy To a patient Probably you have to write several articles Whereas you can show that to your student In one touch like this with the hand Or how I speak What the tone of my voice I learned a lot of things from my professors And I think we are putting them at a disadvantage Do you have any good ideas? Well it's I think that in general There is a very important insight Whatever the official curriculum is There is also a very big unofficial curriculum And so you know we say I say do X, Y, or Z But then if you go to the wards And you see something else Then you say ok well this is how it really is So for many of these topics I think that you can be Your own critic of behavior That you see around you And you can say I'm going to try to do better Or you can say this was good I'm going to pick up on this I'll give you a good example A couple of years ago I gave a speech About jargon in You know in the In morning rounds And then that morning I was on rounds and I was Walking into a patient's room And said to the patient Oh we gave you something But we'll see what the MIC show on your plates And then we'll probably change the antibiotics So I said What's a plate? She looked at me like I was a complete idiot I was like she was like A culture plate That's what she said a culture plate I said oh what's culture You know so These are hard lessons to learn So a plate is actually Something you eat food off of It's very clear what a plate is To a patient it's not a culture plate There's no agar involved in most people's dinner Right so You just have to think about So we went back And I said let's talk to this patient Again and let's see What were you trying to say And let's see if we can understand each other better It's difficult though You have to listen to yourself And you have to figure out Where are you going to be able to You know to make improvements With comprehension There's a You know there's a lot of scenarios Where really we're We're misunderstanding our power I think a lot of this thing is about power too When I When you go into a patient's room You're going to talk about something difficult Sit down Sit down It'll affect how you talk It'll affect how they talk It'll affect how they listen They'll notice that something is different You know I'll tell you an example from when I was a Sub-intern I was a very very eager sub-intern I would come to the resident I'm here I'm going to take your admissions I'm very eager And so one day I came in I said I want to take your next admission And the other The intern stumbled out of a patient's room And the patient's yelling at the intern And the patient the intern just says I've had enough and the resident said That's your patient So I walked into the room I was like Hi I'm your medical student I'm going to be your doctor And the patient Went Very big impact on me Cold train And I was like So then I listened and he had music playing He was playing a love supreme By a John Cold train It was the first time that I had ever seen a patient Having their own music I was in a very poor hospital at the time I never saw that before And for whatever reason His power to me I just pulled up a chair and sat there And I realized that nothing Was to happen until He was ready At one point during this At the end of that song I noticed that the tourniquet was still on his arm And he was still dripping blood out of his Out of the poorly placed catheter Just a little bit of blood was dripping out And then I started thinking It's dark in this room He has the lights off And then I said to him You have a headache He said yes And then he said I was in Manhattan In the early 90s So this is HIV He had Cryptococcal meningitis And by sitting and talking with him I could do the LP I could get him treated He did great But without engaging with him Without sitting and talking with him Without listening to his music It was going to be a fight And you know So I think that You have to just be able to do it Somehow be open to this somehow Find the patient somehow And Just demand of yourself Who is the patient that I'm with Am I ready to be with this patient I mentioned to somebody just in the hallway I mentioned to someone in the hallway That we wash our hands We go from one room to another We wash our hands What I would like you to do Wash your hands Of course you're going to wash your hands Of course you have to do that But when you wash your hands I want you to say I'm now Dedicating myself to focus on the next patient That I'm going to see Tune everything out Get rid of all the other stuff You wash your hands as a dedication To the next thing you're going to do You're now going to sit with another person Another human being And you have to focus on them Another team member or whatever it is Just get rid of it Focus on the next patient And that washing of your hands can be your dedication To that act You have to wash your hands Make it be a motivation for you For good Thank you very much You're welcome