 So I'm going to be talking specifically about shared decision-making broadly, but also within the context of African-Americans using that paradigm as a model for other vulnerable populations. Marshall Early had talked about LGBTQ minorities. And so there are a lot of people who are vulnerable in the shared decision-making process, of and beyond what it is to be a patient who is vulnerable in that process. My disclosures. We have some grant funding. And I work here at the university. And I will not be discussing any off-label and or investigational use of medications or treatments in my presentation. All right, so I'm going to start with two very quick video clips. Some of you may have seen them on TV, hopefully so, because they're part of an ad campaign from AHRQ. And then let's see. So do you have any questions? What is your super the day? We have a mulligatani soup. Oh, do you have any specials? We have a steak special today. Oh, how's that cooked? That's pan-seared. Does it come with a side dish? Is it grilled? Can I have it steamed? So what do you recommend? What kind of pie do you have? You went after. I'm from Ohio. Any questions? Ask questions. For the 10 questions everyone should know, go to ahrq.gov. All right, so that, for me, puts it in a nutshell as far as some of the inherent challenges that happen when we transform ourselves as regular, everyday people, very informed consumers to when we get to be patients and feel like we're not fully clothed in our paper gowns, we don't have as much information as a physician, we may feel scared about a medical illness or worry that they're going to give us bad news. And so some of the inherent autonomy and self-efficacy that we carry as regular people, sometimes that doesn't translate into the medical setting. And so that's part of what I see as our job as physicians, and my job in particular, is to try and help patients make that transformation back to their whole selves. And this is part, again, of one of our federal government's missions, is to let people know that questions are the answer, that asking questions in and of themselves are a mechanism to better health care and better health outcomes. All right, oh, not again. OK, so we're going to talk today about what is shared decision making, why it's important, what are some of the barriers to shared decision making, which Dan alluded to earlier, and then used as a case study, African-Americans, particularly urban African-Americans with diabetes, which is the core group that I study here, using it as a way to think more broadly about vulnerable populations and how challenging it might be to implement shared decision making in real world practice. So we're going to start with what is shared decision making. And so for me, the previous conversation was very helpful, because we think usually that it encompasses not just the elicitation of preferences in the deliberation phase. Dan had talked a lot about joint deliberation. But it also includes making a decision, making a choice, deciding between A, B, C, D, all of the options that you had mentioned, that it actually is both of those. And that's preceded by a conversational exchange of information between patients and doctors. What often happens, if any of you have ever been patient, is that you might feel like you're on the legal stand when you come to the doctor's office. And you say, doctor, if I've been having some chest pain, is it what I want to do on the scale of 10? Are you having nausea, shortness of breath? Are you sweating? And a series of questions that are really helpful for us as clinicians to understand the problem, but doesn't necessarily feel like it's a conversation where patients' perspectives are fully explored, where patients, where there's space for people to talk about their life story, their life circumstances that help them and us jointly make a decision about what's best for their plan of care. So ideally, a shared decision-making would actually have three domains, information sharing, deliberation, where we talk about the pros and cons, and the downs and ups of each of the different options. Physicians can make the recommendations based on their medical knowledge. But then ultimately, this decision reflects not only patients' preferences about treatment, but their preferences about their health values, which are sometimes different things. So patients are experts at being themselves and knowing what it's like to have to take the medication, knowing what it's like to have to suffer the side effects or have repeat MRIs to follow a tumor that we're watching. We know what it's like from a medical perspective as a physician. So we have medical expertise. Patients have the lived experience expertise. Separate from that are health values. And so we as physicians may prefer quality of life over quantity of life. Patients may prefer quantity of life over quality of life. And so we have to acknowledge that we have inherent preferences and biases ourselves around health and that patients may have ones that are very different. And the process of bringing all that together and coming up with a collaborative decision about care is really what shared decision making is about. And it's messy and not clean. And it varies from person to person. It varies within persons over time, depending on how their life trajectory is going, and depending on circumstances. They may not want to be that involved if they're having a routine chest cold. They may want to be really involved if they're having to side between cancer care or surgery. And so the context really matters. But these are sort of the broader ways in which we can understand the process. So I'm going to show you this because I'm going to have the same slide several times. So information sharing, deliberation, and decision making. So why is shared decision making important? Well, it's essential to ethics and that's why we're talking about it a lot today. But it's important for broader reasons. And one could be simple and crass and say, well, it's important because important people tell us that it is. And so the American Medical Association says it's important. The Association of American Medical Colleges, the American College of Physicians and the Institute of Medicine all have embraced shared decision making as something that it's important for physicians and patients to undergo together. So that for me, well, that seems good enough. But really for us as clinicians, we have to think a little more broadly other than getting a stamp of approval from important foundations. This is a report that came out from the Institute of Medicine back in 2001, defining what quality of care is and sort of the key tenants. And patient centeredness is one of those key qualities. So we're trying to think about what's a good healthcare system? Who is a good doctor? Patient centeredness is key to that. And I would argue that the definition on the screen of how they're defining patient centeredness really encompasses what we're talking about when we say shared decision making. Also establishing a partnership where patients and their families can come together with physicians to express their needs and preferences to have the education and support they need to understand the choices and to ultimately make decisions that reflect patients' preferences and that allow them to participate in their entire healthcare experience. Shared decision making is also important, increasingly important as we think about chronic disease and trying to manage chronic diseases and reduce the cost of chronic disease in this country. Shared decision making is central to how we think about the chronic care model and managing that disease. So this is sort of a very famous conceptual model of patients as they live in communities, as they come into healthcare systems and what it takes from a healthcare perspective and from a societal perspective to ultimately help each one of us when we're patient to maximize our health and potential. Shared decision making is correlated with positive health as well. So it's not just something that is morally good or ethically we could argue for, but we have scientific evidence to suggest that it actually helps people live healthier lives. So for me, I study diabetes. People's diabetes is better controlled when they engage in shared decision making. There's improved blood pressure. For those of us who are legally sensitive or lawyers in the room, you're less likely to be sued. Fewer mouth practice claims, less doctor-swapping, which has implications for patient care as far as continuity of care. And we think that some of the mechanisms through which having conversations with your physician can improve your health are that when people actually understand the plan of care, they are better able to implement that plan of care, be more adherent to the plan of care. And through lots of other things like patient satisfaction, we know that when people like their doctor, they're more likely to follow recommendations and to be engaged in that care. When they like their doctor, they're less likely to sue their doctor. So all of this positive asset, these interpersonal skills, actually can result in tangible health outcomes. Part of the process is through communication and shared decision making. And then for a lot of us who think about health policy and are trying to wrap our hands around the patient-centered medical home and as it's evolving over the past few years, shared decision making really has implications for how we interact with patients and how we're developing new health systems to create patient-centered medical homes and the number of times that patients are gonna be interviewed by us as physicians as part of routine interviews. So what are some of the barriers to shared decision making? We've talked this morning about some of that and so we're just gonna unpack that a little bit more now. One of those is power imbalance. So as Professor Rudney was mentioning earlier, when patients have less information, when they may feel scared, emotionally vulnerable, when they may not have as much information about the disease, it's rare that patients are physicians or most of my patients are not physicians. And even if they are, they may not be specialized in the area that they're coming to seek care for. So a radiologist may be seeing someone for gastric cancer. They don't have as much information about gastric cancer as the oncologists are talking to. And so there's an inherent power imbalance when you're a patient, no matter who you are, that the physician will have more power and has the potential to take advantage of that situation and bully people through and sort of force their opinion on very vulnerable patients. That power imbalance, that inherent power imbalance gets exacerbated when you think about patients who have extra levels of vulnerability. So maybe they don't speak this language. They speak English, but they have low literacy. They can't really read English that well. Or maybe they read English fine, but they have low health literacy, which is a different thing. There are many of us who are very smart, but don't speak the doctor language that we pick up in medical school. And it's hard for doctors to sometimes back-translate. And so they're hearing words that sound familiar, but they have no idea how to connect the dots and really what that means. And so when you add all of these layers of class and education and racial discordance and perceptions around how I'll be seen if I'm a gender minority or a sexual minority that can further exacerbate this power imbalance and make it really hard for patients to feel able to engage into your decision-making. So some of the things that we just mentioned, health literacy, self-efficacy or confidence, trust in the provider, fear or denial about their disease process to keep them engaged in the conversation in the first place, and the normative beliefs around what is my role or what do we do in my community about interacting with physicians? Is it Doctor Knows Best? A number of my older patients when they come in, they always are very dressed up as though they're going to church, but they're just getting dressed up to come see me. And so there are a lot of cultural attitudes and norms about what it means to go see a physician and how you're supposed to act with that physician that may have people in the impression that they are less likely to speak up on their own. Things that help are basically things that we are already trained to do as physicians. Be nice to people, engage them, invite them into the conversation, work on interpersonal relationships, validate patients' concerns and be not only physically available when you're in the clinic, but emotionally and intellectually present as well and there's a difference. So here's just a paper that we did about some of the challenges to implementing shared decision-making, particularly amongst vulnerable populations, but those key constructs extend to others as well. I also want to just talk a little bit more about the sociopolitical context for African-Americans and sort of following up on what Marshall had talked about as far as social identity and how we bring our humanity, how we bring who we are as people to the clinical encounter. And so for African-Americans, many of the ones who are African-American in this city came here from the South as part of one or two waves of the Great Migration and so had experienced significant segregation, Jim Crow laws in the South and moved upward as a way to try and escape those realities. And so some of the persistent and pervasive structural inequities that we've seen organizationally interact with those that happen interpersonally. And so over time and over generations, people have had to have strategies that help them adapt to living in an environment where there's inherent power imbalance. And so we see a lot right now going on with Black Lives Matter and other kinds of things with immigration where vulnerable communities have been taught to act a certain way to survive. And those survival techniques that code switching, that kinds of deference keep people alive, but it also affects how they may interact with seeing their physician in a clinical encounter. And so that unpacking are things that we need to address in the clinical situation. So again, getting back to these three domains. When we did a study of African Americans and asked them how they envisioned shared decision making, I only bring the slide up to show you that there's a whole lot of other behavioral things that people were saying, including adherence and non-adherence to care. So people would sometimes behaviorally act out or manifest their choices about care and assume that that would be the same as verbally doing so. So yes, I'm participating in my own care because the doctor gave me a prescription and I didn't fill it. So that falls into a different paradigm of how we think about participating in care. But for some patients who are vulnerable, they may use different ways of expressing their preferences than what we would ideally like to see within the clinical encounter. So these are a few of the slides that Marshall had mentioned. I'm just gonna walk really kind of quickly through them. The first slide just sort of acknowledges that inside ourself, we have a very large atom. And what this is supposed to represent is all of our different identities, our racial identities, our sexual identities, age, gender, socioeconomic status, all of who we are as people, they're all living inside us at the same time and interacting. And how we identify ourselves is not just a reflection of who we think we are, but the mirror that society gives us back as to the true value of who those beings inside of us are. And so we have a person in and of ourselves sort of thinking about ourselves, but in the clinical encounter where there's a patient and there's a provider, there's people, that's how we see ourselves, but a lens through which we see other people. So when people are coming in as patients and something is happening, they may be interpreting that experience through a lens of gender, through a lens of race that may or may not reflect the reality of what's happening, but maybe how they see that reality and perceive that reality that then becomes their own experience and how they're going to choose to adhere to plans of care or how engaged they will or will not be in the shared decision-making process. So it's just important for us to understand these sort of lenses, as I've been getting new glasses, the lenses through which I can or cannot see the world, that these figurative lenses exist too for all of our experiences, particularly ones in the clinical encounter. And this one gets really busy, but again, we have the atoms within ourselves, we have some lenses through which we're seeing things, shared decision-making, as here's my pointer, it's right here in the middle, and then getting back to those things as far as efficacy, understanding, patient satisfaction, being some of the mediators through which we ultimately come at health outcomes. And so how can we really sort of encourage many of these variables, really support some of these variables to get to where we want to be. And then I'm gonna just quickly talk about a case study that we have, which is a program here in the city of Chicago, 10 weeks long, meets weekly, that really talks about ways that people can engage, not getting to Dan Brugney's question about how do we actually do this? When there's so much disconnect, so much disempowerment between patients and physicians, can we really actually do this in real space and time? So we're trying to teach people not only about what diabetes is, so they have information, but then actually trying to teach them skills about shared decision-making, have them role play about asking more questions and clarifying information. So again, we have how we conceptualize shared decision-making, and we translate those into what we call the 3Ds for patients, discuss, debate, decide, because it's really easy to remember. And so we have people work on those three constructs in the same way that we have our medical students work on those constructs, but just calling them different things. And so we've culturally tailored the classes to fit the community that we're working with. And this is a quick video, which I'm gonna skip, despite all the technical stuff to get it set up, that we use in the class, and just to show some of the results from the work that we did. So this is primarily an all-African-American middle-aged group with some education, but some challenges around comorbidities and their diabetes complications. We found improvements in diabetes self-management, so they were actually doing things better to manage their diabetes over time. We also found improvements in decision-making, perhaps skills and confidence, not only in how their physicians were treating them, but how much they were able to engage into your decision-making. And I'm just gonna spend a second on this slide, because this one, the very bottom one, has to do with decision-making itself. And you'll see that patients actually felt more confident in early phases with engaging and shared decision-making throughout. And then over time, they noticed that their physicians, so this is at six months, that their physicians began to have some engagement as well. So the more patients were asking questions, the more their physicians responded by doing so as well. We also saw health outcomes. So their diabetes was better controlled, their blood lipids were better controlled, they reported better physical health, and they actually reported better mental health as a result at baseline at three months and at six months follow-up. So we do have some optimism that we can help patients who are the most vulnerable increase their sense of empowerment and efficacy at engaging the shared decision-making process. And these may be particularly helpful for all people, but particularly for ones who are vulnerable and to potentially reduce health outcomes and health disparities. Here's a paper about that. This is just our project team, which works on our diabetes stuff. Another picture of our team. And then she'd like to acknowledge all the different spaces that I sit in at the institution. So the Booksbomb Institute, the McLean Center, obviously the university and the Center for Diabetes Translational Research. So thank you so much for your time. And I'm the moderator, so I feel particularly sensitive to like cut myself off. I have one and a half minutes for questions. Hi Monica, September Williams. Thank you for your presentation. I've recently been consulting as a bioethicist to an organization that deals with financial inequities, particularly in pension planning. And the question is really, how do people make their decisions about what they're going to do? They're trillions of dollars of working people's money that are in hyperspace. And what they've come up with is that the decisions are extremely complicated and more like clinical decisions than anything else. The difference being that there's no ethical code in the finance industry that says that your pension plan record holders have a responsibility to do ethical things to you. So my question slash comment is that it seems to me or have you tried to take things out of the clinical context while you're talking to people about decision making and in other contexts, like how do you decide what you're going to do with your pension plan money on your job as a postal worker or that kind of thing? Have you done any crossover? Well, it's showed in the very first video that we have to make decisions all the time in life. And ideally we would be informed and engaged and do so. I study health in the clinical encounter. We do think about that paradigm more broadly as we do community engaged research. So sharing power, sharing information with organizations and trying to build coalitions to promote community level health. I don't do talk. I'm talking about flipping it into another arena that's very important to people like their money or life era. Yes, their money affects their health. I don't do that, but I do think that that's important that we sort of think about empowering people, giving people more information and the expectation that they would be more involved in decisions that involve their life and not just their health care. Thank you. Thanks for your talk. I've been here this morning hearing about shared decision making and I have to say I'm getting increasingly uncomfortable with the term. You know, maybe it's just the buzzword of the day and I should just accept it, but I can't say I really think of decision making as shared, clinical decisions. In my condo association, I think the decision making is shared, but those decisions affect all of us. In my office, I think of the patient as doing the decision making and me as the consultant. So do you wanna say something about that? Right, I mean, I think that there's a fine line and sometimes it's finer than others and the difference between shared decision making between autonomous decision making and between very paternalistic or passive decision making. And so at the end of the day for consumers or autonomous models, patients assume all of the responsibility of that decision and physicians are more consultants. I'm here to give you some options, but maybe not tell you what I would recommend. Maybe, maybe not. And may or may not explain my health values to bring that as part of the clinical equation too. So ultimately, you're right, that patients will have to vote with their feet on whether or not they're gonna do the treatment plans at the end of the day, even if the decision was not shared, patients have the responsibility because they're gonna do it or not do it. I mean, they come back to me three months later and said, well, I never did what you said, that was their choice. But ideally, choices that people make before they leave the office are ones in which they feel most informed that they have a sense that they can actually implement the plan of care. They know how much it's gonna cost. They know where to go. They feel comfortable with the needs for their family support to be able to help them do that. They understand how to check their sugars or where this monitor. And so that there's a number of things that are implied in there. And one thing that I didn't really talk about so much was the implementation plan and the need for sort of making sure that the plan is one that everyone can do. And so do you have this at home? Can you understand this? And so really, you know, walking through that with patients as well. But ultimately, I think that those decisions are best, that's my bias, when physicians and patients do them together. To bring another post work. Okay, Mark is saying we're done. Okay, we're done. My clapping. We're keeping this on time. Let me, it's our last speaker. Hold on.