 Good morning! It's really exciting to be here. Thank you all for joining us. I'm delighted to introduce as our first panel presenter my boss and mentor, Dr. Marshall Chen. He is the Richard Perillo family professor of health care ethics in the Department of Medicine at the University of Chicago. He also currently serves as the national president for the Society of General Internal Medicine for our academic primary home. He's the director of the Robert Wood Johnson Foundation reducing health care disparities through payment and delivery system reform program office. He's the director of the Chicago Center for Diabetes Translation Research and he's the associate chief and director of research in the section of general internal medicine and also an associate director here at McLean Center for Clinical Medical Ethics at the University of Chicago. Dr. Chen works to improve diabetes care and outcomes on the south side of Chicago through health care system and community interventions. He's also leading the evaluation of the Commonwealth Fund project that is implementing the patient-centered care home in 65 safety nets and across five states. He's also investigating how to improve shared decision-making between clinicians and LGBT racial ethnic minority patients. Today Dr. Chen will be speaking on the topic improving shared decision-making with LGBT racial and ethnic minority populations. Good morning. So this project is mostly funded by the agency for health care research and quality. A little bit of funding from Robert Wood Johnson Foundation. The closest I have to a for-profit funding is Merck Foundation which is a philanthropy funded by Merck Company. So it's very much a team sport this particular project and my presentation represents the work of the whole team. I have here in purple members of the team that are affiliated with the McLean Center. Either as alumni, faculty, or we have to talk the fellows in some of the summer intensive lectures. Here's a part of our team, sort of one of our United Nations pictures. And I particularly want to acknowledge the following people on the slide who are much of the content for today's talk is drawn from their contributions. A special shout out to Justin Jia who's an undergrad here at the UC who's on our team as well as helped out with making some of the slides. So I'm going to describe the challenge of LGBTQ racial ethnic minority patient disparities and shared decision-making. I'm going to outline a conceptual model for improving the shared decision-making between clinicians and these patients and I'll describe ongoing research for improving care in this area. I'm going to do this through a sequence of three cases. The first case is what I would call a setup for disaster and it'll be introduction into LGBTQ cultural competency 101. The second case we'll talk a little bit about biases about Asian-American women and we'll lead us into a discussion of the conceptual model for shared decision-making. The third case is called Nightmare at the Clinic and it will again let us talk about a model for the environment in which we do shared decision-making and I'll end with some ongoing research of the group. So the first case is setup for disaster. So the clinical scenario is what's called HIV pre-exposure prophylaxis for PrEP. So what's been found is that for high-risk patients there's now a new combination pill of two antiretroviral drugs which if given daily, taken daily, can reduce the risk of actually getting HIV by about 92%. So imagine that you're a clinician and this is a patient that you've seen once before, a 24-year-old African-American man and he basically had given hints during his first visit that he was sexually active with men and women. He said he doesn't use condoms and in your particular city most of the sexual activity is within race meaning African-Americans having sex with African-Americans, white people having sex with white people. You did some basic testing because of the sexual activity history and found out that he was HIV negative but positive for gonorrhea. So you're bringing him back for a second visit. It's only a second time you've seen him and then here are your goals for the visit. You want to review these test results and then take a more detailed sexual history. You want to discuss why this patient may be a good candidate for this new HIV PrEP medication and you want to engage in shared decision making about PrEP. You know talking about the clinical situation, the pros of taking PrEP, the cons, come up with a decision. So you know it should feel very, very comfortable I think to most of the clinicians, you know basic decision making. And then ultimately too, this is the second visit with this patient, you want to build the clinician-patient relationship. Now put yourself in the patient shoes. So you have a steady relationship with women and occasionally you have sex with men. You identify as being heterosexual. You thought you know am I bisexual or not but you know this didn't feel right at this time. You don't use condoms because well you don't have AIDS and you know you're not promiscuous. In fact you have sex with normal guys, you know not gay guys. And you have a gay white friend who comes from that gay white neighborhood on the north side of town. In fact that's what you associate with being gay, you know your gay white friend. You have a very strong identification with the African American community and really under no circumstances are you going to take PrEP because if I do well you know people will think I'm gay or going to have AIDS. So you can see how this is really sort of a setup for bad things happening in this particular encounter. And I put down here on this slide just some of the challenges that you know might arise during your encounter with the patient. You know the challenge is the sexual identity versus actual sexual behavior and how it's a pretty good chance you're going to make some mistake or blow something in terms of the language you're using with the patient. This issue is what is the patient's community? You know is it the African American community? Is it the LGBT community? Something else? How do you tailor your counseling and the sheer decision making for this particular patient? There are some hints here of internalized homophobia, so self-hatred of this patient, discrimination in the LGBT folks, discrimination based on race. What also raises the issue of are some issues more important than health in terms of you know this person's identity and the issue of determining identity at one's own pace. How do you be supportive? So this large project we have three specific games. One is the system that review what are the key issues regarding sheer decision making in the LGBTQ racial, ethnic minority population around certain paradigmatic conditions. Second and what we're doing right now is I say take any input from a diverse set of stakeholders regarding what do these patients want regarding the sheer decision making and then the final part of the project next year will be developing tools and disseminating sending information both locally and nationally. So it turns out when you do the literature review there's very very little the intersection of sheer decision making in LGBTQ racial and ethnic minority patients. Most of the literature has to do with just basic sort of cultural competency regarding LGBT patients more generally. Now let's go over like some of the basic concepts so that you'll have some sense here. So first what does sexual orientation mean? Well three different dimensions. One is your identity and you identify as being bisexual, lesbian, gay, queer, or straight. Your actual behavior you have sex with men, women, or both. What is your attraction to which genders physically and emotionally? Queer is a complex topic based on trying to reflect the oftentimes there are no like clear boundaries between some of these definitions and I'll explain this with two quotes. The first quote is appeared by Thomas Dunning. I love the word queer because it doesn't tell you anything about me and has room for all the flowing shades of mind or anyone's sex, sexuality, emotions, politics, spirituality, family, and gender. To me it's beautiful and strong and all-encompassing and all-inclusive. While there are definitely parts of me that could be labeled gay man, that identity has never felt comfortable on me. While we want to be seen as more than homosexual, many of us are also homo-emotional for example, right? I want to be seen as more than a gay man with presumptions of discol-love and empty consumerism. Queer tells you I'm so much more than that and it reveals nothing at the same time. I'll come back with a second quote that will flush this out a little more detail. So gender identity is your internal sense of your gender. Do you feel male, female, neither, or both? Expression is how you present your gender identity, such as through your speech or your dress or your behavior. So you can see then that you know in your head there's gender identity, your internal sense there is then in your heart, your sexual orientation, attraction, identity, behavior, and then biologically there's your sex, your sex assigned at birth anatomically. Here's a second quote. Gender queer, gender-bendered boy, I don't really see myself as one sex over the other. I am biologically female, although I have had female to male top surgery. I am not on a testosterone because I don't feel that being labeled male would make me feel closer to what I feel I am. And what am I? Something in between. One slide on health disparities. So it turns out the LGBT population has a lot of health disparities. Generally there's a much higher prevalence of certain type of mental and behavioral health disorders. We've heard for example like with the past year and decreasing tension on transgender, transgender women are at high risk for suicidal thoughts and attempts. And the stunning 44% of LGBT people have been threatened with violence and sexual assault. And a lot of data is put down at the bottom of the slide here that if you're an LGBTQ and a racial ethnic minority then you frequently do worse in terms of these disparities. So some basic issues here. So gender identity is not necessarily equal to sexual orientation. In LGBT you can't really lump it as a whole category. Really it's L, G, B, and T. Gender identity and sexual orientation can change over time and can be fluid. So again it's not sort of a rigid sort of system here. And as the first case demonstrated the three components of sexual orientation do not always align. You cannot always correctly guess someone's sexual orientation or gender identity. But we have a story that we have a big team. Probably one of the three most sort of people have the most experience with the LGBT community is one of the folks helping us with recruitment who's an African American lesbian. And a bunch of us were interviewed by the Wednesday Times a couple weeks ago versus the major LGBT newspaper in the city about our project. And if you were asked well who in the team is from the community and you know this expert on our team actually gets wrong in terms of some of the folks on our team. Race and ethnic identity may come before sexual orientation or gender identity. Once you know one LGBT person you know one LGBT person. The importance of establishing a safe environment in your organization assuring confidentiality. Sometimes things don't have to do with LGBT. Sometimes a cold is just a cold on a transgendered cold. We'll talk a little bit more about how people describe their identities and the language they use and your own language. So for example instead of do you have a wife are you in a relationship? We talked about using people using their own terminology not satisfying your own curiosity about things. Pay attention to your unspoken language, your mind expression for example. We talked about using a preferred name pronoun. You know no matter how experienced in what you are sooner or later you're going to make a mistake in terms of something that may be perceived as being disrespectful. And you know say I'm sorry I do not mean to be disrespectful. And if a patient's name doesn't mention insurance and medical records you know just trying to find out well you know maybe they miss a different name that's being used and we'll come back to that. Slides on a large developer from John Schneider. Remember that families, friends, community groups and religious spiritual organizations may have projected, ostracized, verbally abused, physically abused or thrown away your patients due to their orientation or identity. Some patients have experienced sexual abuse, rape or trauma. And some patients have had discriminatory health care experiences. So we're talking about the ethical practice of cultural competency and I think Palabra Robes will talk a little bit about this also later today. Recognizing when those biases and community dynamics, a sensitivity to cultural differences, the avoidance of generalizations about cultures, culturally competent care, challenging racism, heterosexism, genderism, sexism among colleagues, the institution with a community at large. So we're now going to segue into the second case here, shared decision-making intersectionality in this mix of race, ethnicity and gender identity, sexual orientation. The second case comes from Judy Tan, one of our colleagues at the University of California, San Francisco. It's one of biases about Asian American women. So Michelle is a second-generation 53-year-old Taiwanese queer cisgender, so transgender, opposite, same, cisgender woman in a long-term relationship with a cisgender woman. She's experienced racism within mainstream gay spaces and she's a formidable advocate in the Asian American Pacific Islander LGBT community. However, she's mystigmatized, mystigmatized vision within the Asian community and therefore she's not out to her family. She comes in today for a PAPS mirror as part of a routine exam with a new physician, Dr. Steve, a 45-year-old straight African American cisgender man. Prior to the exam, Dr. Steve asked Michelle, is she sexually active, which Michelle says yes to. Upon examination, it becomes clear that Michelle has not had penetrated into course if that the exam is painful. Dr. Steve quickly ends the exam without providing sexual health, risk reduction counseling, or STD testing. He assumes that Michelle is not sexually active, but rather she's naive and limited in English proficiency. Dr. Steve recommends that Michelle reference materials on sexuality and reproductive health in her native language. Though confused and unsettled by Dr. Steve's actions, Michelle is differential and allows herself to be shown out. So Monica, in a couple of talks, is going to go into much more detail about shared decision-making. Just in brief in this collaborative process we talked about that involves information sharing, discussion, and decision-making between clinician and patient. And Monica will go into this model and to more detail that she took the lead on developing. But all to say that, you know, there's what we say to each other during an individual encounter and then what's in our heads. And so we know we're all familiar with this story about Ahmed Muhammad and, you know, basically racial profiling. There's a couple aspects of the story that many people here probably are not familiar with. One is that the mayor of that city, Irving, Texas, had said a number of Islamophobic comments earlier. So he gets just a station in terms of society. The other is this sort of heartbreaking interview that MSNBC did with him, maybe I think it was a couple days after the event. So I remember seeing it on YouTube. And then the question was, well, what was your immediate reaction when you were arrested by, you know, the police here, taken away? And he said, well, my initial reaction was, oh, it's true. It's what people have already told me, that I'm a terrorist. You know, so it's almost self-perception that was sort of colored then by, you know, what people have been telling him in society as a norm. You know, so is Michelle's case an issue of miscommunication or are there at least intersectionality issues? You know, in terms of a limited awareness of Dr. Steve of heterogeneity within the Asian population, a stereotypic interpretation of an sexually inexperienced woman with limited English proficiently, you know, a professional foreign image. And then this issue of deference, you know, why was Michelle a deference, a first-generation time-lapse American? There are some issues of internalized heterosexualism that we're not going to be speaking out of any conflict. And then interestingly too, there are always the implicit and explicit signals we send as providers in a language we use, in a bi-language we use with patients. And so he was not very welcoming in terms of saying that's safe environment for her. Again, a whole variety of issues, in terms of the heterogeneity of Asian population, culture, Asian English proficiency, language barriers, cultural norms. So for somebody else for the issues, this issue of filiopiety and continuation of bloodlines being a particularly relevant issue. Stigma, so fear of being out in the Asian community, rejection for family and community, internalized racism and homophobia. And the issue of multiple minority group identities. So in some ways like Michelle being really sort of isolated from both the LGBT community as well as the heterosexual community. The sexual stereotypes. So for example, you know, the submissive Asian man, so always in submissive sexual position, or the exoticized submissive Asian woman sex worker. And there's a whole history of Asian exclusion and discrimination, from immigration policy to the Japanese internment for example in World War II. So we've talked about this particular paper, the course of establishing a safe environment, having language-appropriate materials. Specifically asking patients, how can I better understand you in terms of your identities above Asian as well as LGBTQ, disclosure being particularly difficult for Asian Americans in the heterogeneity. Understanding your stereotypes, your own implicit biases. What the stereotypes are implicit biases you may have about accents, body size, model minority status, sexual exonization, and how this may impact how you impact and deliver character to your patients. And this third case here, which I call minority clinic, a 29-year-old Puerto Rican patient. It's a transgender male. His biological sex is female. He prefers being called he and him. His orientation is bisexual. His legal name is Carolyn Jesse Perez. His preferred name is CJ Perez. So his patients come in for a visit and the last visit his provider discussed the need for cervical cancer screening. But he was reluctant to proceed because he did not like being engaged in such personal and intimate activities so associated with females. It's also the necessity of dealing with this. It's causing him a lot of anxiety, frustration. He's really ambivalent about having a past mirror. So it's going to be a difficult encounter. So when the patient ever asks the clinic, you know, he sees a new staff at the front desk. You tell her receptionist that your name is CJ Perez. She cannot find you in the system. You ask her to look some more. After she searches for what seems to be an attorney, you let her know in a quiet voice your legal name is Carolyn Perez. She seems flustered and confused for a piece of all of this information loudly. You notice that the guy who also placed pickup basketball at the recreation center and for whom you have not disclosed your status is waiting nearby. Over here in your conversation with the receptionist, he looks up at the two of you and then quickly looks away. The receptionist asks for your insurance card and driver's license. So he gets to her supervisor with conflicting names and gender between the driver's license and that record. The people behind you and mine seem to be annoyed. You hear one of them let out a frustrated sigh. The receptionist loudly tells them Carolyn Perez has arrived for her appointment. So, you know, be out of here at increased risk then for physical, sexual or verbal abuse. The relationship with his friend at the Recreation Center could be permanently affected. You know, at a minimum the patient is developing negative perceptions of the clinic and potentially he was a provider. And then again at a minimum you're probably going to find an angry, frustrated, immoralized patient when you enter the room. So one of one of our papers is one where we have this model for the environment that most sure decision-making takes place. And I'm just going to go through this very quickly that we don't, this timing system is not working here so I'm assuming I'm sort of running out of time probably. Yeah, okay. So we're talking about like six aspects of the environment that can impact care. For example, workflow, having private space. Obviously be very important as an example. Information technology, discussing what should be put in the record. Patient shows in terms, for example. The organization of structure. For us right now, for example, at the University College it was a big diversity inclusion initiative trying to make the organization more diverse and equitable. So it's a major different network. Examples for giving, putting LGBT symbols in our work of LGBT rich ethnic minority patients in your waiting area, for example. Gender mutual restrooms, the biggest issue right now in the news. Cultural competencies, shared decision-making training. And then rewards. So for example, rewarding production disparities in different areas. Highlighting LGBTQ issues within your website and the newsletters. So this is a brief that we're continuing to do this part of the qualitative stage right now. We've had a number of kickoff events through recruiting patients. Here's our general flyer, transgender flyer. But we've had technical events to assemble Latino organizations on the west side. African American Americans on the west side also. Howard Browns on the west side. And then we're also then getting to questions, for example, like trying to understand dual identity. So how, for example, as black or African American, the identity and the LGBT you affected your daily life in how you may interact with the world. We're also similarly interviewing providers in terms of competency about these issues and what I think some additional concerns are in caring for this population. So I want to end here, leave a little bit of time for discussion and questions and answers. So the conclusions are that, you know, beliefs, perceptions, values, images, matter, trust and history measure. You can't address what you don't know. And that's also, it really critical to address the emotions as well as the technical issues. And that's multi-level into personal issues, improving systems, and connecting policies to improve shared decision-making to the LGBTQ minority patients. Thank you. The boss has said that we have some time for a few questions. Framework. Can one be a good physician to patients who identify themselves in these various ways without affirming the framework in which the identity is understood? It's a very thought-provoking question Dr. Carolyn. You know, I think like all of us as clinicians, in some ways the issue of LGBT rich, I think minorities, raised issues that are generalizable to the diversity, all types of diversity. And I think that is sort of a common core that, you know, as clinicians, we try to understand our patients as best as possible. And we know that from your work, for example, also we need to think about our own impressions and biases and belief systems that we bring to encounter also. But the bottom line is that we all agree that, well, the goal is to try to have the health outcomes of well-being of patient B number one. I don't see anything that is discordant. I think that's consistent with your work also. Yeah, I think you're conflating the term that you're using. What was that term you used for? I don't know. It was the term you made. If you're acknowledging it, what was that? Without affirming. Oh, affirming. Yeah, I think you're mixing up affirming and judging. So you don't have to affirm, but I think the problem is that people judge these people. And so I think the problem is not so much that you need to affirm people's lifestyle is that you need to not judge them. Okay. Right. I think a lot of it is awareness that, like one of those polls in the last slide was, you know, it can't address what you're not aware of or that you don't even know it may be an issue. And so that's part of the purpose of this project is we're trying to understand, you know, what are going to be issues that are referring to the LGBTQ rich and ethnic minority population. You know, essentially our team, we have a lot of experienced people on it and disparities, including people who work at this interface. But we rapidly became humbled in terms of like how little is known about this area. And so we're hoping to shed a light on it. I could you speak to working with LGBT children at all and in terms of navigating if someone's transitioning and maybe their parents don't agree or there's tension there. So I'm not an expert on adolescents or children LGBT. Telling what I've heard from other people on the team is a challenging area because also as we mentioned that gender identity itself is a sort of fluid issue. And so I think it's back to some of the fundamental core concepts of of being open-minded to try to understand where the child is coming from, where the family is coming from, looking out for the ultimate outcome, you know, what's in the best interest of the person's well-being, but basically trying to be open and addressing these issues directly.