 Good afternoon. I am delighted to welcome Monica Peek to our seminar series on healthcare disparities. Monica is an assistant professor in the general medicine section and a member of the RWJ national program office on finding answers to disparity research for change. You remember they're one of the co-sponsors of our series. Monica's research focuses on health disparities, quality of care, the impact of race and culture on the patient provider relationship, particularly as it affects diabetes health outcomes. Monica currently is funded by the NIDDK and the Robert Wood Johnson Foundation to investigate racial differences in patient preferences for shared decision making to explore the barriers to shared decision making among African Americans and to pilot patient empowerment interventions that enhance shared decision making for African American patients with diabetes. Monica is the co-principal investigator on grants from the NIH and the Merck Company Foundation that aim to improve diabetes care and health outcomes among residents on the south side of Chicago. It's a great pleasure to welcome Monica to our series. Her topic today will be patient perceptions of clinical care and physician communication implications for health disparities. Thank you so much for having me. I'm really delighted and honored to be here. And the longer the series goes on, the more intimidating I became of having to give my talk, especially after last week Stacey was so impressive. So I'll try and do my best and please bear with me. So I wanted to talk a little bit about big picture things and then just contextualize it with the specific issues that I think about but some of these issues aren't, are broader to health care and disparities and how we think about interacting with patients. Okay, so one of the big issues is how does communication affect health? So how is it that just talking to someone has implications for your life, your morbidity, your mortality? For me, I specifically think about how doctors and patients talk and particularly when they are making decisions about treatment and about care within that clinical context. But the bigger question sometimes is just how is it that talking to people affects your health? How do perceptions affect health? And what exactly does that mean? And is there, does it really matter if what you perceive is real or not and what are those implications downstream for peripheral health effects? In particular, for me, I think about perceptions as related to race and the racial filter that a lot of African-Americans view their health care encounters and particularly as it interfaces with issues around mistrust and perceptions of discrimination and what that means for health care. So then, like, how are these things specifically related to health disparities? As Mark mentioned, I spend most of my time thinking about diabetes health disparities and so the work that I'm interested in about how people talk together and think about things has implications for my broader work in diabetes health disparities and so trying to make those linkages is really important for me, I think, and for our patients. So really what I'm going to be talking about a lot today is the overlay between shared decision making, discrimination, and diabetes health disparities. All right. So I just have to give the obligatory slides about diabetes disparities. So particularly for African-Americans, for most racial, I think, minorities, but particularly for African-Americans, there's a higher incidence and prevalence of disease. So people are likely to be told they have it and then over time that group just gets larger and larger. And for people who have diabetes, it tends to be worse controlled and the comorbid conditions that run with it. So hypertension and high cholesterol are very frequently associated with diabetes and those are also less well controlled amongst African-Americans. And some of these have synergistic effects. So when we start thinking about complications like retinopathy and instant adrenal disease and amputations, if you have high blood pressure, if you have high cholesterol, you're more likely to have those complications as well. And so in general, the range is about two to four times the rate of these complications from diabetes and the comorbid conditions amongst African-Americans and compared to non-Hispanic whites. And those are stats that occur nationally and locally within our city as well. And in some cases, in some conditions, it's worse than the national averages. So these are disparities in health status about differences in clinical outcomes for people who have diabetes. And there are a lot of things that affect health status, many of which we've talked about in these series, where people live and how people live and what they have access to has a huge impact on their health and a much larger impact actually than what we can do as a physician. And I say that sort of being a physician, spending most of my time thinking about clinical care, I recognize that it's still only a small piece of the pie. So this is sort of with the caveat that most of health status may not be driven by health care, but health care is an important player. And that's the area that I have decided to sort of focus my interest in thinking about disparities in health care as they contribute to disparities in health status. All right, so more background, make sure you're on the same page. The Institute of Medicine had two key reports relatively recently that are really relevant to this kind of work. And one was crossing the quality chasm, and they define quality health care as having six key components, two of which are patient-centeredness and equity. So those are two that are relevant to today's presentation. But they also say that safety, health care should be safe, it should be effective, it should work, it should be timely, it shouldn't take forever to get it, and it should have some modicum of efficiency to it. But the other two are equity and patient-centeredness. And what we know is that for a range of health conditions, a range of clinical scenarios and health care outlets, African-Americans tend to have lower rates of or lower quality of care. As an example, fewer visits to their primary care physician, fewer eye exams, fewer referrals to the eye exams, and fewer rates of receiving the eye exams, less monitoring of their cholesterol and their diabetes. So the A1C is the measure of a three-month average of people's diabetes control. So less likely for it to have their two major conditions, cholesterol and sugar, monitored for people who have diabetes and less likely to have influenza vaccinations. The Institute of Medicine used this model. It wasn't one they created, but it's one they utilized to sort of think about health care. And so, again, they say equity is really important. This report came out, the unequal treatment report said that our health care system is not equally distributed. So that's just sort of taking one of those key aspects of quality of care and sort of expanding it to really flesh out what this means about unequal treatment within our health care system. And what they are really, there's a lot of different ways to think about health care disparities in care. What they're saying is that this is not care that's related to differential access. So we don't have equal access in this country, but we're assuming that we did. So if we can assume that everyone can get to the doctor with the same rate of efficacy, then that's not what we're talking about. We're not talking about differences in care that are related to patient preferences or things that are clinically appropriate. So African Americans are more likely to have sickle cell disease. White people are more likely to have cystic fibrosis. I mean, there are differences in screening and treatment and how we think about those things that really reflect clinical realities. We're not talking about that. What we're just talking about within what we consider to be an equal access health care system, the residual differences that remain, they attribute to mainly two factors. One of which is sort of the ecology of health care systems or the infrastructure that's in place that sets up unequal delivery of care and institutionalizes racism essentially. And the other is the kind of disparities due to the interpersonal communication, the discrimination, biases, stereotypes and uncertainty. I'll talk a little bit more of that in a few slides that occurs amongst people within the health care system. So we have systems and we have people that are part of our health care system, and that's really what they're focusing on when they're talking about the unequal treatment. So that's just a bit of a background. And so we know that discrimination may be one of the things, if not the major thing, that can impact the equitable distribution of health care resources in this country. Particularly when we have a system that is not really a good system, it's a fragmented piece of mess. And so when there's not a lot of policy that can sort of shape how the system operates to be efficient and fair, then there's room for a lot of things to happen that can lead to injustices. We know that African Americans are more likely to report discrimination within our health care system. So rates range from 15 to 70%, depending on the population, when it was measured, how they measured it. Comparison to really any racial and ethnic group, but when we're looking at non-Hispanic whites, the rate is generally pretty low and the difference is pretty stark. Okay. So back to that patient-centeredness component of quality of care, which is sort of what I think about a lot. So the Institute of Medicine has defined patient-centeredness as health care that establishes a partnership amongst practitioners, and their families to ensure that decisions respect patients' wants, needs, and preferences, and that patients have the education and support they require to make decisions and participate in their own care. It's kind of a mouthful, but basically that patients feel supported, they have the information and there's an environment that really encourages them to be active partners in their care. And so this is really how a lot of people would think about shared decision-making, which is sort of the name that I use for this kind of thing. I also know that African-Americans are less likely to have this kind of patient-centered care, patient-centered communication. Their visits are less participatory and they have less shared decision-making. So this is all like, to me it's fascinating, but is it really important? And so if it wasn't, if it didn't have clinical ramifications, then I wouldn't be spending my time doing it. And so the question is, why is this important? So thinking specifically about the shared decision-making component of our TRIA that we're discussing today. So shared decision-making is central to what we call the chronic care model. So as over the past few decades we have transitioned to how we think about managing chronic diseases like asthma, diabetes, heart failure, depression, we have moved from a more paternalistic model to one where patients are really center. And where patients do a lot of their management at home, and so a lot of guidelines are coming out saying so patients can have their own peak flow meter at home and when their asthma gets to a certain point they know they're supposed to do this versus this so that people can feel more empowered to manage their own disease and not just have to come to the emergency room or have to call the physician when their health is not going as well as anticipated. And so having activated patients that can understand their disease, that can communicate with their physician, that can manage their stuff at home, and then sort of bounce it up is really how we're now thinking is the best way to manage people who have chronic diseases. So shared decision making is really sort of a core part of this new paradigm for chronic care management. It also has huge correlations with health indicators. So people who are engaged in sharing about decisions with their physician about their medical care have better control of their diabetes, better blood pressure, they're less likely to be hospitalized, their visits are more efficient, which people always ask me about because if people are doing all this talking how are visits efficient? Part of that is defined in like the words per minute. So people are able to get more information across in a shorter period of time and if people can do some of the front work during those first few visits and get sort of a baseline of who they are and what the issues are then subsequent visits can be actually shorter. Fewer malpractice claims and less doctor swapping and there's a huge personal health and financial cost associated with treatment doctor swapping and so those also go down as well. And we're just now over the past few years starting to think about or starting to sort of elucidate some of the mechanisms that link shared decision making with these positive health indicators and some of those are self-efficacy, patient satisfaction, trust, patient understanding of their disease process. And so there is, I'll tell you about it but there's another study I was going to mention. Okay, is there data on that fewer hospitalizations? Yeah. Yeah, I try to only put things up here that actually have facts behind them. Yeah. Despite the blatant lack of references everything up here has science behind it, yeah. Okay. What there hasn't been done previously and this is sort of, I've been working on this for a couple of years now, work on racial differences in shared decision making per se and how and the impact of shared decision making on diabetes health disparities. Okay, so this is, does anyone recognize these pictures? Yeah, okay, so we all know. All right, so this is just contextualizing the concept of discrimination within the healthcare setting. And I say this because a lot of people assume that when physicians take our Hippocratic Oat that somehow there's a miraculous magic process that makes us free from any inherent stereotypes or biases that we may have had through our whole lives or just that we're able to really do what we strive to do, that we want to do. We want to be good physicians and give good care and not be biased in our assumptions but there's not really anything magic that happens just because we get a medical degree and it's naive to think that somehow healthcare systems and healthcare personnel are immune to the very air and water that everyone breathes that has to do with race in this country and so we're not immune unfortunately. And what social sciences tell us the way that we process new information about people is something that everybody does and I think it's going to only get more as we have increased amounts of information that's given per minute all the tweeting and all the other things that I don't even know how to do but I know it exists that's a lot of information and so one of the ways that we can try and process that and stay sort of in control of all that information and not get bogged down is to put people into categories by gender, by race by income, by whatever and so that when we see a person we're not like oh who is this new person I wonder what they're about we're like okay it's the middle age, African American man looks kind of disheveled maybe he's homeless or you know we try and you know unconsciously try and get a sense of who people are really quickly and it helps us sort of get through the day other than you know I have two year old twins they're like make it to our friend or at work and so it helps us become more fast and efficient and sort of get through the day but it obviously has shortcomings so that what happens is that people have a tendency to exacerbate or exaggerate the negative differences that exist between groups so that's stereotyping so that if there's a small difference maybe people blow that up to be a bigger difference if it's a negative one and they tend to generalize the differences to everybody in that group so maybe there's 10% of the population that has X problem and our tendency is to sort of say well maybe it's everybody maybe every black male on the south side belongs to a gang and if I see him walking down the street I better run for my life so those are kind of shortcuts that we use that obviously have bad sort of outcomes and things that we do but it's part of everybody's human working it's part of our DNA we should all admit that there are certain conditions that really kind of bring that out so when we have to use these cognitive shortcuts are when we have to well we sort of use them subconsciously but we are more likely to use them when we have a little time to make a really complicated decision with limited information and a lot of uncertainty and all of those exist in the clinical encounter so if you're in primary care I had clinic yesterday and you get 20 minutes to see a patient who had medical problems and came in with three new ones then you're processing a lot of information and God help you if that's not your real patient you're just subbing in for someone who's in acute visit or something like that and so you're trying to get a sense of all this with limited information about the patient limited testing and objective information and so we tend to do that if you're in the hospital setting now we have to get the residents and house staff out really quickly residents or rounds have to be done at a certain time there's a lot of pressure and I can only see them so fast and so both inpatient and outpatient care have a lot of cognitive demands and time pressure demands volume demands that really make us more rely on these cognitive shortcuts that we probably have not even processed to know exactly what they are but we're using them subconsciously to make decisions about people and then subsequent decisions about the care that we're actually delivering so this study was one that everyone in the room knows about published in the New England Journal was looking at the effect of race and gender on physician recommendations for cardiac cath so people came in with chest pain and the question was do they need to have additional testing looking at their heart arteries with shooting dye in their leg and taking a picture of their heart arteries to see if they need to have a bypass surgery or some other sort of cardiac intervention and the clinical stories were exactly the same the only thing that was different were how people looked so they had so this is half actually had two black women, two black men, two white women, two white men but you get the picture so they only differed by gender and by race and the effects for both race and gender was exactly the same so if you were a woman you had 60% of the odds of being referred for a cardiac cath than if you were a man and if you were black you had 60% of the odds of being referred for a cath than if you were white and God help you for a black woman over here compared to the white man over here you had 40% of the odds so there's that sort of dynamic and so that was really shocking to a lot of people because we had, there was nothing else that was different about that and in real life there's always, there's no two people that are exactly the same but these are people that were exactly the same because they were fake and so so it was really sort of eye-opening to a lot of people and that was not the only study that has tried to figure out a way of tapping into our subconscious bias and what happens and how we make decisions and there's new instruments for measuring things like implicit bias that are coming out and all of it is really eye-opening and concerning I think for us in the medical field that we have baggage that's in us that we aren't really sure is there and there was a different study that actually asked physicians you know some scale about how biased you are and who's gonna say that but of course everyone said no and then but when they did this implicit bias test they were found that people, there were not only differences in how they saw people who's gonna you know adhere to the plan of care who's gonna do whatever but that in fact affected their treatment recommendations for again cardiac care so these are things that aren't just sort of pleasant interpersonal things or things that have real implications for the kind of care recommendations that we give people and how people are perceiving the kind of care that they're receiving and where they're actually gonna adhere to that plan of care so that's one thing so there's actually been sort of an explosion relatively recently thinking about perceptions of discrimination and its impact on health most of that has come in the area of societal discrimination so what we call sort of everyday discrimination so you go to the store in your last in line you go to blah blah blah and the police pulls you over like it's sort of the daily hassles that aren't major but it's sort of the everyday nuances that happen to racial ethnic minorities those kinds of measurements of self-reported discrimination have been associated with a lot of health conditions self-reported reported poor health, hypertension, chronic lung disease cardiovascular disease they spin on well in bed alcohol use, cigarette use, a whole bunch of stuff and the thought is that it's not that for this kind of health effect it's mediated through physiologic changes from stress so they're using stress the sort of chronic stress model and how it causes dysregulation in the autonomic nervous system and the immune system and other sort of systems of care that things just kind of go awry and start having complications and downstream health effects now for discrimination in health care this is a very much more nascent area where we don't really have a lot of good information about what's in the black box for the mechanisms or even what the associations are really so we're just now starting to look at some of this what we do know is that there have been associations between self-reported discrimination within health care and measures of preventive care like cancer screening cholesterol screening, influenza vaccinations and then delays in medication use and medical testing and treatment so the assumption is that people are wary about the recommendations they're getting and trying to decide if they really want to do it or not and then ultimately decide to or not and then patient satisfaction and there really hadn't been a lot of work done with the impact of discrimination on shared decision making or on diabetes health outcomes and actually let me just back up and say here in case I forget to say later the obvious is that unlike societal discrimination health care discrimination has the unique potential to directly impact someone's health and so it's not really clear whether or not people's stress when they come to the doctor where they're already feeling sick and vulnerable that additional stress is what may be changing their physiologic path line or if people are reacting to reality and are getting unjust distribution of health care services and that is the mechanism for which their health is being affected so that doesn't make sense so if a policeman stops me on the road that doesn't directly affect my health unless like I get put in jail and lose my job and lose my health insurance but if a physician is doing something maybe he won't order the right test or maybe he won't give me the newest medication and so there's a tighter link between what's happening in our health care system to what's happening in the rest of society as far as discrimination and its impact on health right so these are two papers that came out in the past couple of years looking at this is about societal discrimination but just to kind of give you an idea one of them was looking at self reports of everyday discrimination was associated with elevations of C-reactive protein which is sort of this broad inflammatory marker and has been associated with cardiovascular disease as well as coronary artery calcification which is just a huge multi-center study looking at women and her disease and so these are some of the kinds of research that are coming out now trying to figure out exactly what some of the physiologic links are between this experience and how it affects the body and how that ultimately will downstream affect health okay so then this is our conceptual model that really tries to think about within the clinical setting how issues of race and culture ultimately affect this patient provider relationship through some of these normative beliefs that we were talked about issues of mistrust which is sort of legendary amongst the African American community with Tuskegee and all these other things perceptions of discrimination how those affect this relationship and in the setting of that relationship is where shared decision making really has to occur so people, patients have to want to have a shared decision making you know, relationship, providers have to want it but they also have to have a relationship that's conducive to that and so all of these things are variables which are in play when we're trying to decide whether that's actually going to happen or not and then here's just some of the mechanisms again of how we think that may actually play out for health outcomes there's a paper that came out just this year I guess just last year, 2011 now that looked at, because most of the papers are cross sectional so you have associations but it's not really clear which came first or which is driving something but they looked actually longitudinally so they had a cohort of people where they had the physicians really engage their patients so they had this active participatory effort at baseline and they measured that and then later they were tracking changes in patients sense of activation and empowerment and that improved and then that tracked with self-efficacy which then tracked patient adherence to medications and then they were seeing improvements in A1C and LDL blood pressure was kind of borderline so that's not the only study but that's one that has a nice sort of longitudinal timeline but there's others that have evidence that support a model of something like this the other thing to note with this conceptual model is that so there's perceptions of discrimination sort of as it may play out within the relationship between patients and doctors but there's also this sort of this big arrow over here on the side and this recognizes the fact that some patients may just lead the health system all together I had a bad experience, I don't trust doctors I'm going to just go sit in my home and hope for the best and then show up in Florida congestive heart failure or diabetic keto acidosis or something and so there may be health outcomes ultimately unrelated to the health care system if someone opts out of the system alright so these are a few of the research questions that I'm going to tell you a little bit about some of the work that we've been doing and then tell you about an intervention that we've been working on so the first is why are there racial differences in shared decision making? Why? Why does that happen? There's perceptions of racial discrimination in health care affects diabetes outcomes and then can we actually develop culturally tater interventions to improve this shared decision making process and empower African American diabetes patients so the first question has several subparts one of which is do African American patients define shared decision making differently we say what? Isn't there a prior question and the prior question would be what sort of model of the doctor-patient relationship would patients want I mean that's not been studied very often and I'm talking not just in terms of African American but in patients generally I mean what percent of our patients want this model compared to let's say a passive model a passive model and then maybe also contrasting a really vigorous autonomy model it's about 85% want shared about 5% want an autonomous model consumerist model and then the rest about 10% want a passive role and that would be in this population that you're studying or in general a model correct for language and cultural differences but the challenge is sometimes how is a physician to be the custodian of all knowledge for different people I think that's very challenging nobody is more than one person we have lots of different kinds of patients so there's no one who's going to be a perfect match by gender, class, race country of origin favorite food so many things and we only live in our own bodies and so there is issues around how do we maximize our ability to connect with those people given our inherent limitations and so there's a whole body of work around cultural confidence in how do we try and not just understand about different cultures but how do we change ourselves and look internally and be open to understanding new cultures and so I have a couple of my patients who I think love me the most they don't speak English and I don't speak their language but we hug a lot when we see each other and I have on the back of their forms that I keep how to say keywords in their language and so I try and use those probably but I think they appreciate that I'm trying and so you know it does create an additional barrier but I think any barrier can be overcome including cultural barriers okay and I'm open to questions I feel so free that I have an hour and a half I normally talk really really fast because I'm trying to get it all in and so now I just feel like I'm going to play all day so I won't keep you past 130 okay so this first question about are there differences in how people actually define that so this is a paper that we wrote looking specifically at that question and what we found is that when a lot of researchers get in the room and sort of think about this we don't always have a lot of patient feedback and loop in how patients think about things and there's not always a good match and the research is starting to show that for a range of different kind of patients there's not a good match for the african-americans with diabetes that I studied there also wasn't particularly a good match not a bad one but the difference in some key ways so for example the three sort of domains of shared decision making which are generally accepted to be the common ones from Kathy Charles to sort of the dominant sharing, deliberation and decision making slash implementation so doctors and patients get to get on talk doctors tell you what you think is wrong patients say oh my head hurts and you know whatever then there's a deliberation about options well we can get a CAT scan I can give you some Tylenol you can call me tomorrow or we can do blah blah blah and then ultimately a decision gets made about what the plan of care is so that's sort of what's supposed to be happening that patients and doctors are contributing and people sort of march through the clinical encounter and think about a clinical illness now here's what we found so patients did say that yes physicians should be doing some stuff and patients should be doing some stuff and we really actually heard a lot that patients wanted to have their story told and have their say and so we all as clinicians have some patients who really like to talk and we just have to let them run their course for at least a good two minutes because if we don't they're going to feel really frustrated and still keep coming back to that story and so that is really important to them and that says things that you wouldn't necessarily understand it says that you validate who they are as a person and that you really want to hear about them and you care about them and you really want to sometimes get that out and we heard that a lot in our focus groups and so but one of the things that we heard is about the deliberation process a lot of people said I never knew there was more than one option for a skin and cat that there's two different pills I could have taken or there's surgery versus physical therapy or like this was like new revelation so it's a number of our patients which was really sad actually so we kind of broke it down but this is how patients were mapping what they considered to be shared decision making so let's say that the doctor only offers one option you can either follow the advice regardless if you like to or not you can actually say I'm not sure about that tell the doctor I favorly agree or disagree by adhering or not adhering to the plan of care and then if you do have several options then you can either make your own choice disagree or agree with the doctor adhere or not adhere to care and all of this patients would consider to be shared decision making because maybe there are some people who said really the most important thing is this part the information is sharing I don't care so much about the other part so I get this I'm sharing and so there was a lot of learning about what was important to people and how they defined that and one of the key things I guess I'll just go back is this area of adherence I really want to underscore that because we really frown upon non-adherence in clinical medicine because we're giving treatment plans of care that we think will help people live better and live well and so when patients don't do them we get frustrated we start like not wanting to see them in the office we think that they're not committed to their care and so it just sets up a whole lot of badness and what we were hearing is that many patients didn't feel empowered enough to say I don't want to do that or I don't know how to do that I can't afford to do that if I do that I'll have no more money to feed my kids like you know so this would say okay doctor thanks and then go home and not do it and then come back three months later and the blood pressure is still the same and like oh why are you not taking any pills so it's just like this thing that patients were viewing entirely differently that's their way of having some sort of sense of control and ownership and sharing in the process they're being an active player whereas physicians were like what are you doing like you don't you're just lounging at home not paying attention you don't do what I tell you to do and so the how people were interpreting that I think was really interesting for me and it has changed how I interact with my patients specifically in trying to bring those things out okay so this is just a few quotes so people that we would have said were passive who again everyone else in this paradigm said that they were active so one person says she said that I should start taking insulin and diabetes pills and then she started getting low but I don't want to take anyway and I try to do what's best for me and that's and that's it I'm a praying person loving the Lord and I try and do what's best for me I take all my medicines but she really doesn't want to take her medicines but the doctor tells her to she's going to do it anyway she considers herself to be involved in shared decision making then there are some people who either agree or disagree verbally or behaviorally so one example was we sit there in the office and she tells me she starts laughing she tells me what to do and if I don't like it I'll say no I don't want to do that I'm 73 years old okay some things we just know we ain't going to so this is another patient these are all patients at our medical center by the way the doctor told me I need to go to the dermatologist now the lady up there at the checkout desk I told her that I didn't want to go that is if this little skin growth goes down I don't see a reason to operate so I have to think about that and then the moderator says well did you tell your physician oh well I didn't tell my doctor about my preference for not messing with it I just told her I go through with it and this was not the only thing so for people who don't interface with the healthcare system a lot most of the front desk staff are black a lot of the medical systems are black and a lot of the physicians are not black so this lady had something her doctor gave her some advice she's like I don't think I want to do that seems too much but I told the lady at the checkout desk who has nothing to do with her care what she thought about it and what her plans were and you know all it's craziness but anyway so that's how she was sort of maintaining control and having a sense of good stuff oops and then the last would be autonomous patients so I wanted to be a shared decision but I make the final call I wouldn't mind some input from my doctor but I want to make the final decision and again all of these are people who said yes check the first box I want I want shared decision making I love shared decision making so for each one of those little boxes we have quotes and theories and a whole lot of stuff but these are just a little sampling of some of the things that we were learning about how people were thinking about this process and what it meant to them to talk to their doctors and to have some ownership over their care so then the next study was are there racial differences and patient preferences so again thinking about conceptual model if they want to have it they have to like each other enough to want to do it with each other so are there racial differences in patients do black people in general defining it however they want to want shared decision making less and that's why they're getting it who knows completely unanswered question until now so this paper came out recently actually the first one we started working on was the last one that came out this was a study of about a thousand patients who were getting care at community health centers in the Midwest and it was a survey analysis cross-sectional survey so what we found, so there are a couple of items so one question was patients and doctors should be equal partners it's like saying do you like Apple Pie everybody said yes 93% of all people said yes and there are no group differences between the two but when we actually looked at the Likert scale responses and looked at just the strongly agrees African Americans were much more likely than whites to strongly agree with that statement of equality and having equal partnerships then there are three other questions that hung together so we had them as a composite measure and then we looked at them separately and African Americans were more likely to strongly agree with a passive, strongly disagree with a passive role so leaving decisions to their doctor should their doctor decides what gets talked about and then and then should you rely exclusively on your doctor's knowledge so all of these African Americans were more likely to strongly disagree for and only the last one did we not meet statistical significance and then when we ran each two multi-variate logic models there were no differences at all so basically African Americans from what we can tell in this study population wanted shared decision making as much as their non-conspirant white counterparts when you're testing for race and class and not race but class and education and duration of the patient provider relationship and all those things and maybe a little more so hard to say that study also looked at patient behaviors which is relevant to the previous one because the people are defining behaviors in different ways in different ways what exactly how does all that check out so we looked at that too what we found, same study was that African Americans were more likely to initiate discussions about diabetes care in four of six measures so for blood pressure wait wait so these four blood pressure, an eye exam, foot exam microalbumin which is a test early test for pre kidney disease African Americans were more likely to initiate those discussions themselves not more likely but not less likely to initiate discussions about monitoring for their sugar control or their cholesterol control and so these were just bivariate associations but when we put them lumped them together and adjusted for other factors in the multivariate loget model the odds ratio was nearly two so 1.78 for African Americans initiating discussions so it wasn't just that people were saying I prefer a shared role and really all I want to do is tell my doctor that I'm a little woozy because my sugars are too high they really want information that's related to the care delivery that they're receiving so that we thought was important also so then a lot of unpacking how to go about with the whole issues of race how does race affect a patient and provider behaviors and those perceptions of bias and racism and distrust play a role in how people are perceiving this process okay so that was a couple of papers I'm going to summarize in one slide I think so for race and shared decision making what we heard about patients these are all from patients this is a qualitative study so the effective race on shared decision making processes so thinking about those three domains of information sharing so they said patients may be more likely to share information about their symptoms or concerns in light of race and racial issues because they may be thinking that they're going to be looked down upon or that if they tell the doctor they couldn't afford the medicine that will be seen particularly negatively if they're African American and so they may just withhold some information and not be as forthcoming that in that sort of liberation process they may be less likely to speak up and actually question the authority of the physician and that during the final decision making process they may be less likely to adhere to treatment plans which again is an echoing of the previous study that I was talking about so one of the quotes says there are very few African Americans that would question the treatment that they would get I have a neighbor and she goes to the doctor and when she gets medication she throws it in the garbage can I love that quote, it's so crazy why does she go to the pharmacy stand in line pay her good money get the medication and take it home and then throw it in the garbage can I laugh every time I see that but she does and so why is that there's this sort of weird ambivalence or dichotomy that people live in where on one hand doctors and health systems are good I should do something but on the other hand I don't know if I really trust it and so there's two or three people living in the same person having all these different behavioral manifestations in their health care system and that is really very fascinating to me and how we can try and identify all these different parts and leverage them for good so there's not all this sort of schizophrenic behavior that happens with the same person for physicians people told us that with information they felt like doctors were less likely to give information like medical explanations and test results and not tell them at all or just withhold the bad parts or sort of tell them a half story which is what physicians used to do all the time back in the day to protect patients doctors were less likely to listen to African American patients so the time spent listening and then the quality of the listening relationship that they may be more domineering over the African American patients so someone will start saying something and then the doctor will just start talking and getting out or trying to talk over them doctors may be more likely to talk down to the African American patients about their patient preferences for treatment so this one person said my mother always said the doctors did not tell me the thing that would happen to me and I only wondered in my own mind whether that would have been a race thing maybe they assumed that she would not understand and would she just do this, do that, take this, take that without a reason why but my mother was an intelligent woman so this is her daughter sort of reflecting upon what she saw with her experiences with her mother and trying to figure out why things weren't good and did it have something to do with race because education and intelligence didn't seem to be an issue alright so back to this model and I'll only sort of put that in here as a reminder for me that we're going to now transition to thinking about this black box right here the perceptions of discrimination so this is the study that we did with the behavioral risk factor surveillance study so a national study that 2005 started having a reactions to race module so they asked people about your self-identified race and ethnicity and then what other people think yourself what your race and ethnicity is so your socially signed race and your self-identified race they asked about people's perceptions of discrimination within health care they asked about people's reactions to that like do you feel physically ill, do you get psychologically distressed, do you cry and a couple other questions sort of all in that reactions to race module and that's an optional module so they're sort of the core requirements and then a couple various module states can choose to pick up based on how much money they have and what they consider their public health needs to be so we looked at states that had the optional diabetes module the basic one just says do you have diabetes and if you have the optional one you have all these sort of questions about diabetes care and processes and what you're doing states that had that one and the reactions to race module and sort of looking at associations between self-reported discrimination in health care and several classes of diabetes measures so this paper this is a table which I now shouldn't have been put up because it's so small it's more than one so what key findings are that here so I'm going to say quality of care we have four measures that we looked at the number of diabetes related primary care visits monitoring for diabetes control so testing for hemoglobin A1C the interval for the eye exam and foot examination and these are all sort of standards of care from the American Diabetes Association then there are two measures for self-management so are you checking your sugars by yourself at home and do you check your feet at home as you should be oh and then the third one have you gone to a diabetes education class before and then we have two measures of diabetes complications so diabetes related foot disorders which are a precursor to amputations and then diabetes related retinopathy which is a precursor to blindness so those are two huge life-changing complications that disproportionately affect racial and ethnic minorities so we found that people who reported racial discrimination in health care had less than half the odds of three of the four diabetes care measures so 0.38 for primary care visits 0.42 for A1C testing 0.48 for an appropriate interval for an eye exam and then more than twice the odds for diabetes related complications so 2.32 for foot disorders and 2.26 for diabetes related retinopathy and there was no change in any of the measures for self-management let's play a little statement about the self-management because it has important for two reasons one a lot of the models that think about the mechanistic pathways between discrimination in health have some sort of negative health promoting behaviors in them so I get really stressed I'll smoke some cigarettes or I'll eat a lot of food or I'll do some other things that aren't good for my health and feel a little bit better and so patient behaviors are on the causal pathway and a lot of theories between health outcomes and perceptions of discrimination now we measure things that aren't satisfying we didn't say are you in a swing we said are you checking your sugars are you checking your feet did you go to a class so these may not be the kinds of measures that would change or be part of that pathway but at least what we saw is that there didn't appear to be a relationship between what people were doing at home and what they were experiencing or interpretations of what was happening in the healthcare system alright I'm going to move to the next slide so then next slide many of you have seen two weeks ago when I did RIP with Marshall is can we develop culturally tailored interventions to improve shared decision making and empower African Americans with diabetes patients so this is the start out of the CTA pilot that was done at Booker and then we got some additional grant funding to be able to ramp it up at other clinics and have a lot of other things that are with it so so it's a patient education pilot that now has a lot of other stuff that are interrelated so this is me and Marshall in DC so our initial funding came from the Merck Company Foundation in sort of collaboration with the CDC and the Office of Minority Health every time I see that picture I laugh because I was six weeks postpartum and I was like so tired and I remember thinking I just want to go lay down now but it was a lot of fun anyway so that's us this is this little part of the talk is about sort of diabetes and us here in Chicago so as Stacy mentioned last week we don't have good stats these are 2004 data but the death rates for diabetes in communities are highest in these concentrations on the south side and we always have our little high parkish little blip right there that's always surrounded by a lot of craziness and so we have a lot of diabetes death around us we have a lot of poverty around us so A to the 10 Chicago's lowest income neighborhoods are in our hospitals primary service area and again H is where we sit and then we have a tight link of poverty right around us so this grant is really sort of thinking about specifically interventions on the south side of Chicago recognizing that as a community we have a lot of challenges distractions things that are going on that make it hard for people who live at home to have a safe place to eat and to exercise and to manage their diabetes and to think about their illness and not get all stressed out but we're also on the south side of Chicago which has a long like rich historical legacy there are amazing community organizations that are here and that have been here for decades and there's a lot of regrowth and good stuff that's happening here also so we're trying to acknowledge the craziness and try and embrace the wonderfulness that's here in our community and try and figure out how we can make something that works so this is oh more nice pictures community gardening new homes okay so so this is our team lots of folks, lots of great important people we're really trying to improve the access to care quality of care and clinical outcomes long term goal do good stuff, good partners this we have six clinics, two of which are access clinics two other FQAC's affiliated with the university and then our primary care group and diabetes center here on campus and I mention all this in the setting of patient communication training and patient activation we're trying to make sure that I'm leading and spend a lot of time thinking about it and it's using information that I learned with the qualitative and quantitative work to sort of develop this thing so these are classes that talk about patient empowerment they have culturally tailored diabetes education and shared decision making about information sharing, deliberation, decision making which we call Discuss Debate Decide we have these fun stuff we have these interactive cards, this game built on who wants to be a millionaire we have the video that people really like to shorten that for several hours at a time but people really gain so a good number of people came all the time 86% of people came at least 70% of the time and then half the people everybody came at least half the time and we saw improvements in oh that was the video, sorry improvements in measures of self-efficacy as well as self-management particularly in certain aspects of healthy eating it's improved but there are like 20 people in the pilot so some of them are statistically significant and others aren't other areas of diabetes, like exercise checking your sugars, inspecting your shoes those kinds of things related to this, just a few other parts to the moving piece because they're related to patients and how they may be changing the perceptions of their clinical care how they interface the care system how we can put a better human face as we're interfacing with our patients who may come with a lot of baggage around healthcare and we need to sort of help them work that through that we highlighted the PCG that used text messaging to help communicate with patients who have diabetes and we found improvements in diabetes self-efficacy foot exams and medication adherence and one of the things that we really learned is that they loved the idea that somebody from the healthcare system cared about them that they want, we had a computer sending these messages but they thought it was our diabetes educator so they were like, hi Marla, so good to hear from you check my feet but the idea that somebody cared like really resonated with a lot of our patients and these are patients who I think have a hunger for having a positive relationship with the healthcare system and have sort of some old baggage to try and clear out and so that was really effective, we're going to try and ramp that up this is just their experience people liked it, their changes in self-efficacy improved and I have to say that for behavioral interventions, it's easy to teach people knowledge, it's really hard to improve self-efficacy to make people feel like they can actually do something and that is the strongest predictor that people will do something is that they think they can do it first and so for both of these, we've seen improvements in both self-efficacy and what people are actually doing on the ground for your class or intervention was there provider, patient, racial concordance and do you think that that affected it or are there some ways did you test that or yeah, well what we decided was for a couple of reasons so we made the video we had sort of a good scenario and a bad scenario, both the physicians were black, so we didn't want to have the evil white man and then the friendly black you know so they just seemed over the top so we tried to keep it race neutral in how we talked about things but we didn't shy away from the fact that there are these issues around race that we do need to talk about we just tried to separate the sub-clinical messaging with the actual conversation and then as it happened for that class it was taught by three people so myself, a nurse who is African American and a diabetes educator who's white. Is Mark going to get me off? No Okay, two, okay, sorry so we're working with potentially community health workers, diabetes group visits there is something for providers around changing communication patterns and stuff like that so we're doing a lot of community partnerships a lot of our work is overlapping with some of the stuff with the urban health initiative and so that's it so we have funding for this work and then this is just a shout to my co-investigator for all the work that I've done and then my personal funders as well okay, thank you so excellent presentation I have a question about the culture piece here because in my limited reading of literature and interventions everybody talks about culturally-spirited interventions and some of this is race related some of this is patient doctor related some of this is something else and I didn't know if you were going so we didn't get a chance to talk about what piece was closer and whether that was actually involved healthcare messaging based on you know like Cameron's account and work about motivational interviewing and sort of having pieces that are targeted so I didn't know if you did that and what is the cultural piece here right, so excellent question because we're actually trying to write this up right now so I would say two things one, just to acknowledge that our patient population is a fairly narrowly defined group of black people so we're not talking Afro Cubans we're not talking about you know blah blah blah we're talking about mainly African Americans who came up from the south through the Great Migration so these are southern African Americans from a long ago but they're really southerners as am I and so the I mean I really was born in Tennessee not like my parents and so that actually is a fairly narrow cultural group around food practices and around other kinds of cultural things particularly related to food because and so I mentioned that in the video like my grandmother learned to cook from her grandmother we're not that many generations back and so the kinds of food that we were given which was like horrible to try to make it tasty, we have to add a lot of fat and lard and a lot of different things to pigs feet and animal intestines and a whole bunch of craziness but so how people were able to eat things that were unhealthy to be able to live and those traditions if you go to a store you'll see some pigs feet and they're pickled in a jar but people are buying still and so that's not Chicago, that's the south of a mock grocery store that had things that people were buying in these local grocery stores that people would bring in their boxes, their bottles or so and so this is what we have to deal with, how are we going to make it better okay if you have to have to have you know pecan pie, how about we use this and this and this and so there's a lot of like sharing recipes based on what people were doing our nutritionist took food locks and so she had a sense of what people were eating and then what sort of bring to the group dietary recommendations and here's a recipe for so and so the group sharing and learning the African American community tends to for several different reasons be one that has a strong oral tradition and one that relies on a communal sense of storytelling and so we had that to be a key component of how we were teaching the classes both the diabetes education and the shared decision making part so people love to get up and tell their story they love to get up and church and do it we let them get up in class and do it and people could learn from each other and it felt validating for people to be able to share their story a lot of tears shared it was good but that way of communicating and being in a very social friendly way is how African Americans from the south typically relate to each other and so that context is how we tried to run those classes so stuff like that on the national study could you ascertain at all if the lack of getting foot exams and eye exams and so forth was there a difference within the same neighborhood like they would be essentially going to the same physicians or was it also partially based on neighborhood and so forth thinking that you know, Hensdale probably has more podiatrist and eye doctors than south Chicago excellent question that I don't know the answer to my guess is that the data is not going to be that granular enough to make those comparisons because it's a but but it would be really cool if you could it was a wonderful presentation thank you thanks for having me thank you thank you