 Good afternoon. So we're going to go full cycle. We began on Friday talking about health disparities and we had some national experts from all over the United States, Canada, as well as our own institution. But now we're going to be looking at all former fellows who are working in areas of healthcare disparities. I am taking over for Stacy Lindau who had reasons that she was unable to be here today related to health in her family. So our four speakers for this afternoon are going to be Dr. Milda Saunders, who is currently a fellow within the section of hospital medicine, where her research focuses on racial disparities in small area variation. Her work during the McLean Fellowship examined how neighborhood poverty and racial composition affects how long patients must wait to get a renal transplant wait list. And that was actually funded through a program at the University of British Columbia from the Canadian Institute of Health, similar to our NIH. She is currently an assistant professor in the section of hospital medicine at the University of Chicago, as well as a new faculty member at the McLean Center. The second speaker will be Dr. Catherine Mosley, who is an assistant professor in the Department of Pediatrics and Communicable Diseases, as well as a clinical bioethicist at the University of Michigan Medical School. She is also co-chair of the Pediatric Ethics Committee, and I'm not sure if I get to credit her or blame her for the fact that I'm still on the American Academy of Pediatric Section on Bioethics, where she recruited me a decade ago. My third speaker is Elisa Gordon, who is a research associate professor at the Institute for Healthcare Studies and the Division of Oregon Transplantation at the Feinberg School of Medicine of Northwestern University. And our fourth speaker is Dr. Christy Kirschner, who is a professor of clinical medical humanities and bioethics, and also the secondary appointment in physical medicine and rehabilitation at the Feinberg School of Medicine. Her focus is on disability ethics, specifically concepts of disability and medical decision making, healthcare professional curricula, and healthcare access issues and disparities. And Christy is going to talk about her own experience moving from Northwestern into the community to be doing rehabilitation medicine and the impact of resources and access. So on that note, let's begin with Dr. Saunders. Thank you for your attention today. So the title of my talk is, Does Neighborhood Composition Effect Time to Renal Transplant Waitlist? So during our brief time today, I'll start with background. Research question and methods, some results, and then conclusions and next steps. So we know that renal transplant reduces mortality, improves quality of life, and costs less than dialysis for all comers. But the benefits of transplant aren't distributed equally. African Americans comprise about one third of those who receive dialysis, but only one quarter of those who receive deceased donor kidney. And we know that the reasons for the transplant disparities are a variety of many social and biologic factors. However, when we just look at transplant waitlist as opposed to actually receiving the kidney, those disparities still persist. African Americans were less likely than whites to be rated as appropriate candidates for transplantation. And of those deemed appropriate, they were less likely to be referred for evaluation or to be placed on a waiting list. So we know that disparities persist at each step of the process. Further work needs to be done on the causes of those disparities and ways to intervene. One potential way of looking at this is through neighborhood effects. As we learned earlier in our conference, there are a variety of social and environmental factors. And neighborhood plays a role in education, employment and income outcomes. Social scientists and economists have long known this. Recently, we have turned our attention to the role of neighborhood and health outcomes. Neighborhood has been shown to have an effect above and beyond individual effects on mortality, cardiovascular health, obesity, birth outcomes and diabetes. So I sought to look at it in terms of transplant waitlist disparities. My research questions were, do neighborhood poverty and racial composition explain part of the black, white disparity and renal transplant waitlist? And do neighborhood poverty and racial composition exert their effects independently or is one a proxy for the other? So I use the US, we use the US renal data system, which is a comprehensive data set that's publicly available that contains information on practically all of the patients in the US. Within stage renal disease, this was linked to 2000 census data and we looked at both white and black patients who initiated dialysis between January 2000 and December 2006. Subjects neighborhood were divided into nine straight up based on the percent of black residents and the percent poverty. And the racial composition was classified as a white neighborhood if they had less than 10% of the residents were African American. A mixed neighborhood if between 10 and 60% of the residents were African American and a predominantly black neighborhood if greater than 60% of the residents were African American. Similarly for poverty, if neighborhood was classified as poor, based on the US, based on common definitions of poverty, if greater than 20% of the residents were below poverty level and neighborhood was considered poor, if 5 to 19% of the residents were above the poverty level was considered moderate income and it was wealthy if less than 5% of residents were considered below the poverty level. We use cost proportional hazards to determine the association between time to wait list and neighborhood characteristics after adjusting for a variety of demographic and comorbid conditions. So the results. So this slide has a lot of data and I can walk walk you through it. So for black residents here, if we look, we looked at it two ways. So if we divide by the neighborhood racial composition, so within neighborhoods that were predominantly black as we as we decrease poverty. So going from a rich neighborhood, I'm sorry, as we increase poverty going from a rich neighborhood to a middle income neighborhood to a poor neighborhood, the likelihood of transplant wait list decreases in a stepwise fashion. This result holds also if you look at neighborhoods with mixed racial composition as you go from a rich neighborhood to a middle income neighborhood to a poor neighborhood, there's this stepwise decrement, you see it less in neighborhoods that are predominantly white and then similarly, if you look at the same data, but in a different from a different angle. So if you look at neighborhoods that were rich, as you increase the proportion of black residents, so in rich neighborhoods here in gray. This is the reference group, but as you have the stepwise increase in the proportion of African American residents in a neighborhood, you also have this stepwise decrement in likelihood of transplant wait list. And you can see it again less for the middle income group, but also for the poor neighborhoods. So for black patients who live in poor neighborhoods, as you increase the proportion of African Americans, you have this stepwise decrement so that Black residents who live in neighborhoods that are both poor and predominantly African American have almost they're almost half as likely to be transplant wait listed as they're more Affluent counterparts or they're more they're counterparts that live in more affluent neighborhoods. Now this is particularly striking because in our sample sort of consistent with the rest of the US population. Nearly half of our African American residents lived in neighborhoods that were poor and fully one quarter of our sample lived in neighborhoods that were both poor and African American. For white patients, you don't see the same relationship. If you see the gray you see that living in a wealthy neighborhood is increases your likelihood of transplant wait list. So it's best to live in a wealthy neighborhood, but you don't see the stepwise decrement as you either increase The poverty in a neighborhood, nor as you increase the proportion of African Americans. So there is some relationship between socioeconomic status, but it's not as stepwise. And this is just another way of looking at the data for those who don't like to look at things visually and who wanted to see confidence intervals. You see the same relationship. This is for black patients. As you live in wealthy neighborhoods, you see the stepwise decrement as you increase the proportion of African American population. And if you are for within racial categorization as you increase poverty, you see a decrease in the likelihood of transplant wait list. And similarly, no less of a relationship for white patients. So in conclusion, blacks were more likely to live in poor isolated neighborhoods. So 48% live in poor neighborhoods and 27% live in poor predominantly African American neighborhoods. Blacks within these neighborhoods were also less likely to be wait listed. And so we think that a large part of neighborhood racial segregation drives some component of transplant wait list disparities. And this contributes to the large transplant disparity between blacks and whites as a whole. Now there are limitations to this study. We were unable to fully control for individual characteristics. We had employment and insurance status at the time of dialysis initiation as a proxy. And when we use zip code as a measure for neighborhood, now this is a larger area than some other census block group. But we thought for a measure like transplant wait list, it was an appropriate size to look at this effect. And we also have the covariates that were measured at dialysis initiation as opposed to over time. So next steps. Future work will focus on how neighborhood characteristics influence the likelihood of transplant wait list. We hope to examine social capital, including social support and social networks, as well as the role of dialysis center in facilitating or mediating this effect. And I'd like to thank my research colleagues and mentors, and thank you for your time. Now one would think that Milda and I got together to discuss this. Actually we did not. So this is just wonderful serendipity and just sort of think of this as one long continuous talk. Maybe. Alright. So I'm focusing as a pediatrician and as a disclaimer, I am not a nephrologist and I am not a philosopher. And John Lantos said we don't have to be because I'm a clinical bioethicist, so it's okay. So number one, African American children with end stage renal disease spend more time on dialysis. We see fewer transplanted kidneys and die more than white children. And so my question to this group, because we are ethicists, is this just sad but an unavoidable consequence of bad choices, bad genes, bad physiology? Or is this really injustice that we should address? Now I can go through this fairly quickly because we had all of yesterday to talk about it, but let me just quickly review for those who weren't there. We all know power, this is not a meritocracy. For those of you who had that strange idea somewhere, this is not a meritocracy. Power, money, resources are distributed according to gender, race, SES and multiple other things that have nothing to do with how hard you work or how smart you are. Health disparities result and they are defined and people who work in disparity literature may call them inequities and equalities. I'm going to use health disparities because it's easier to say. There are avoidable differences, avoidable differences in health associated with social and or demographic characteristics that have nothing to do with the physiology of the disease. They result, these disparities result from the social structures that create and maintain, and I'm quoting here from Paula Braveman, unequal opportunities to be healthy, making the disadvantaged groups even more disadvantaged with respect to their health. So my question to this group is what is the moral obligation to remediate these disparities? Because we all know that justice requires that similar things be treated similarly. So I'm going to whiz through very briefly what pediatric ESRD really is and what happens. So for children the gold standard is actually a preemptive transplant, getting the kid before they need to go on dialysis and transplanting them. To do that you usually need a living donor and African American children receive fewer living transplants and have fewer living donors. Now this transplant workup for those of you who are not nephrologists requires multiple appointments generally over weeks to months. Both the donor and the recipient, the donor's hospital expenses are covered, the recipients are also covered by Medicare, but the donor does not get any lost time from work covered. Medicare will pay for three years, count them on the fingers of one hand, three years of immunosuppressant medication, but will pay for unlimited days of dialysis. Children on dialysis don't grow as well, they have worse academic achievement and they have worse quality of life than children with transplants. Now people have looked at reasons for the disparities, so why don't we have living donors? Well why do fewer living donors volunteer for African American children? Maybe they don't complete their transplant workups and in truth in the adult literature they don't, the data is not quite as clear for children. Poor adherents, this one we know, African American children are less adherent to their medications, they don't follow up on their clinic visits. It is a nephrologist that has to initiate the transplant workup and as Dr. Saunders has said, they don't get on the list. They are less likely to be referred for transplant workups. Now is this a bad thing? I've just told you that African American families with children with ESRD are non-adherent and kidneys are scarce resources and as we have been drummed into, kidneys are scarce resources and there is a duty, societal duty, not to waste them, to transplant them into someone where they are going to be used well. So if I have someone who is not adherent, someone who's adherent, I'm not being a racist, I am not being anything, I'm just doing what I'm supposed to do. Or am I? So I raise the question again, are these differences unavoidable? Are they unjust? So let's unpack this disparity a little bit. What the heck is going on with non-adherents? Well, long story short, for reasons that have nothing to do with end stage renal disease, African American adolescents are more likely to get end stage renal disease than white children. White children get it either from congenital anomalies and as little toddlers, African Americans get it in their tween ages or as teenagers. And those of you who have adolescents, you know they are way less adherent than little children because you have no control over them. So more adolescents are non-adherent, more African American children with ESRD are adolescents. Hmm, I wonder where our non-adherent starts to come from. Missing the follow-up appointments, ooh, how do we explain that one? Well, for those of you who are clinicians, we know we like our clinics during business hours. We want to have time with our family too, except African American parents are more likely to have low wage jobs for reasons that are a little bit too long to go into today. They don't have a lot of flexible time off. They can't just leave to take their child to a doctor's appointment at three o'clock in the afternoon. Fewer living donors, why are these selfish parents and family members not volunteering their kidneys for their kids? Well, African American children are more likely to have single parents who are the sole support of the household, so unlikely that they're going to be able to take that time off to be a kidney donor for their child. Again, they're likely to have low wage jobs. They don't have time off to recover from the donation, and depending on the kind of job that you have, to be a kidney donor, if you have a sedentary job, you may only be away from work for two weeks. If you have a job that requires a lot of physical work, you may need up to six weeks, six weeks that is not covered, and you may have no job when you come back. Number three, African Americans are more likely to have diabetes, hypertension, obesity, all disqualifiers for organ donation. We already covered that one. So, let me bring back to the point again. Are these bad choices? Are they bad genes? Or are these bad barriers? I mean, why are these problems, if you listen to yesterday and listen to today, why is this affecting more African Americans? If the goods of society are equitably distributed, there should be equal numbers or relatively equal proportions of whites and blacks in poverty having these problems, so why the heck are these giant areas problems for black people? Why is it that there are proportionately more African Americans in poverty? Let me tell you, or at least try and tell you. So, let us go back in time a little bit of history. So, both before and after slavery, there were laws and policies created that created these social structures that systematically disadvantaged African Americans well into the 20th century. Early in the 20th century, it was actually illegal for African Americans to buy a railroad ticket to go north for better jobs. It was illegal for African Americans to own property to change jobs without the permission of their white employer. So, as a result, we had segregated poor quality schools, housing, medical care, no freedom of choice in employment. In 1964, the Civil Rights Act changed this. But think about it, African Americans and whites have lived here in this country together for nearly 400 years, but our citizenship rights have been guaranteed for less than 50. And there has still, to this day, there has never been a systematic nationwide educational program to eradicate racist beliefs. We talk about you can't legislate morality, but we can educate about it. We have never, we have said you must let blacks into your schools, but we've never bothered to change the attitude of, but last week they were our slaves. There is no escape from skin color, because long about now, someone is about thinking, well, golly gee, my relatives arrived here from Romania, Hungary, wherever, and now they are CEOs of whatever. Well, there is a problem with this. And this is a quote from a book that I would commend to you, The Warmth of Other Sons by Isabel Wilkerson. And she says, with the stroke of a pen, many European immigrants could wipe away their ethnicities by adopting Anglo-Saxon surnames. However, a name change would have no effect in masking the ethnicity of blacks. We don't have the option of choosing a more favored identity wherever we go. We are black. The effects of these unjust social structures continue into the 21st century. African-Americans are more likely to be denied access to good neighborhoods even though they have income comparable to whites. They're more likely to be offered higher interest mortgages than whites with identical credit scores and incomes. White employers, and those of you who saw CNN's Black in America, thought as it was, will already know this. White employers are more likely to offer a job to a white male, even one with a criminal record, than a black male with similar qualifications. Even African-American men with graduate degrees from Ivy League institutions encounter greater employment barriers than white men. And this one should startle you a little bit. I know it startled me when I first heard about it. So, going back into slavery, reconstruction, and so forth, all of these prohibitions against property ownership meant no intergenerational transfer of wealth, no houses to give, no money to give, no store to give. Everyone has to start from scratch. At all income levels, all income levels, African-American families have significantly less wealth, and by wealth, not income, assets minus liabilities than white families. Now, prepare to be shut. In 2002, before the market crashed, before all of the economy going to wherever it went in a handbasket, the poorest white families, and this is talking about incomes less than $16,000, had a net worth, net worth, assets minus liabilities of over $25,000. These are our poorest white families in the United States. Black families, same income, negative net worth. That's greater than assets. Let's go to the top now, and the richest 20%, and now everybody in the room pretty much is rich, I bet you didn't know that, 78,000, the richest African-American families have less than a third of the wealth of white families, $0.31 to the dollar. So, is it surprising then that things are the way they are? The resources necessary to pursue a healthy lifestyle are inequitably distributed. Equal treatment, treating everyone the same, actually perpetuates this inequity. So, what I am proposing, not being a philosopher, but being a clinical bioethicist, is a robust and very practical theory of remedial justice. Yesterday we heard about great policy needs and how this could be, but I sit there and go like, okay, how does this work in the hospital? In the same way we hear about great theories of bioethics and things, how is this working at the bedside? So, my stab, and with apologies to Norm Daniels, I'm so glad he's not here right now, and Ruth Fett. So, a remedial justice theory should describe the existing inequities. It should also try and describe the extent of obligatory remediation, but it should work both on the macro policy level and on the micro individual level. There is a precedent for this, and I'm so glad the palliative care panel was before me. The whole issue of patient and family autonomy around end-of-life care was really brought forward by bioethics, and as a result, we had the Patient Self-Determination Act, a macro remedial justice, and we have palliative care programs, we have all of these end-of-life discussions, micro remedial justice. So, let me propose some small examples relative to pediatric end-stage renal disease, macro. Medicare is only paying for those three years, and no, this did not pass during healthy farming. It was proposed, but it died in committee, this particular amendment, so we still don't have this one. A disproportionate number of African-American are adolescents with end-stage renal disease, and this particular problem has a disproportionate effect. End-stage renal disease interferes with their education at a time when they're acquiring job skills. They're more likely to have the poor quality education because their parents can't live in the good neighborhoods, leads to low-wage jobs, no benefits. So, they're more likely to have graft failure because they can't afford to get the meds without that three years of, after that three years of Medicare. A da solution, increase the stupid coverage, make it parity with dialysis. How about a micro example? The poor adherence to appointments. Well, gee, we just talked about the low-wage jobs, you don't have time on. You have a single parent, so you don't have a second parent to say, oh, sweetie, I'm at work, can you take little Johnny to his kidney appointment? No, you are it. So, the parents get to choose between, ooh, my child's health or my job, that's going to give me money to pay for the food, the housing, and so forth. Wait, is this a trick question? No, it is not. So, what can we do about this? How's about some non-traditional clinic hours? How's about doing the transplant work-ups in a single day? What is nice, at least what I think is nice about these solutions is that they actually benefit everybody. You don't have to be a poor single mom to benefit from the fact that, wow, I can take my kid in on a Saturday afternoon or an evening and I don't have to skip a day of work. I don't have to find babysitting for the other kids while I take them, even if I'm a single, even if I have a mom that stays at home with a rich husband. This is easier for everyone. I don't have to worry about my immunosuppressant medications. This is easier for everyone, not just the poorest of. Biowethics, as we have learned, is theoretical and clinical and these solutions to health disparities requires both, together. So, in summary, these invisible social structures created by discrimination and racism disadvantage African-Americans disproportionately. Deprives them of the resources that they need to live and pursue a healthy lifestyle. This is an injustice and this is what we do. We are bioethicists. We deal with injustice. We figure out ways to help moral theory deal with injustice and this is a clear injustice. So we need a remedial justice theory that works. We need some practical compensatory mechanisms. So I would like to thank my collaborators and people who gave me great comments on this in University of Michigan and thanks for staying away. Annalisa Gordon, I'm going to be speaking today about a culturally competent Hispanic transplant program that we have at Northwestern University. Its impact and its focus on Hispanics and its impact on increasing knowledge about living donation and positive attitude about living donation and transplantation among Hispanics. Let me give you a little bit of background as to why this culturally competent program is necessary. Living donor kidney transplantation, as you very well know, is the optimal treatment for patients with end stage renal disease. And there are considerable racial ethnic disparities and access to living donors, which thus undermines even further the benefits of potentially obtaining a living donor kidney transplant for Hispanics and other minority groups. Hispanics with renal failure received disproportionately fewer living kidney donors compared to non-Hispanic whites, 33% versus 45%. And Hispanics comprise 18% of all candidates waiting for a kidney, but only 13.9% of all kidney donors in 2009 were Hispanic. There are a number of reasons for these disparities in Hispanics that have been attributed to the provider, to Hispanic members of the public, as well as Hispanic patient-related factors. Provider factors pertain to delayed referral to nephrologists, delayed listing for transplant among the members of the broader Hispanic public. There are concerns about the lack of knowledge about transplantation and living donation as an option. Fear, distrust, negative attitudes about living donation, religious and cultural beliefs that the body needs to be whole in order for the resurrection to occur, or that God doesn't necessarily support it, or that church doesn't necessarily support organ donation and transplantation. And then more specifically among the patient level, there are concerns that discomfort with actually asking family members or talking with family about the option of living donation and transplantation in general. Many people feel reluctant to ask people to donate, and there's an expectation that family members would come to them as opposed to the patient seeking out a family member to donate. So culturally competent education is very much necessary in order to address Hispanic patients and families concerns, worries, misconceptions and myths about living donation, and as well as to ensure that Hispanics are fully informed about their treatment options, including living donation. So the assumption is that the more that people know about their options and have the ability to engage in discussions, then that may increase the likelihood of pursuing living donation. Let me just give you a definition. I have three definitions here. One is on culture, one is on cultural competency and linguistic competency. I'm just going to give you the definition of cultural competency in the sake of time. That pertains to a set of values, principles, behaviors, attitudes, policies and structures that enable organizations and individuals to work effectively in cross-cultural situations. So I'm going to describe for you in more depth what the Hispanic transplant program is like at Northwestern. It was instituted in 2006 at the end of the year, and it mirrors very much what we have going on for the English program with the same kinds of structures and processes and organization as the English speaking program, and it addresses in many ways the cultural values and beliefs and needs of the Hispanic patient population. And what's great is I was able to do some about 10 interviews with members of the Hispanic transplant program there and found that in many ways, and actually in its entirety, its qualities or characteristics of what made that program, or makes it culturally competent, map really nicely onto the National Quality Forum's framework for standardizing the measurement and reporting of high quality of culturally competent care. So the NQF National Quality Forum developed this framework for hospitals to use in order to develop their own culturally competent programs for whatever kind of clinical care it may be. So it just so happens that our program has the leadership, the support, the drive, and the institutional support for this Hispanic program. It's integrated into our systems. I can give you examples of all of these at a later point, but just to highlight a couple items, and I'll get into the specifics in a moment too. We have like 25 members of the program who are bilingual, bicultural staff. All of the discussions are conducted in Spanish. All the written materials are in Spanish. We seek out the referrals by primary care physicians and nephrologists, but really accenting the PCPs because more Hispanics go to them and they speak Spanish. Here's a really cool thing. We say to patients who are calling up and saying, hey, would like to start an evaluation, we say to them, come and bring your entire family. We don't say, oh, just come and bring your donor with you because that's going to put off a lot of people and put off a lot of the Hispanics who might say, oh, I'm feeling singled out. But bring your family. Bring grandma with you. This is what the director of the program who's from Columbia, Dr. Quesedo, has instituted this. And he explained it to me that by bringing grandma, the elders, the entire family, their support for the patient. And bringing the elders along is a culturally competent component in and of itself who grant legitimacy for living donation as an option to the rest of the family who might be interested in pursuing. I'm going to move on. I can go into these details in more depth if you're interested. We did find some really nice rates in terms of our living donor rate among the Hispanic patients. In 2007, the rate was 62.8, and it increased to 78%. And this is in comparison to the national rate, which was in 2007, 33.7, and 2008, 33.5. So Northwestern is one of the leading institutions with regard to rates of living donation. And for that to also be mirrored in the Hispanic patients who we're seeing is a wonderful thing in and of itself. So more specifically, with regard to the communication, we have one of the first days that patients are told to come to the program is what's called TOA, the transplant orientation and transplant evaluation day. And it involves a couple sessions back-to-back in person where the patients and their families and their friends are also invited to come and receive education about donation and transplantation, the risks, benefits, alternatives, and processes. And they get to hear Dr. Quesado speak about this for about 40 minutes to an hour for each session. And the first session is for everyone. Then the patients go and start getting evaluated in the exam room while the family members and friends continue on to hear the second session. And so what we did was did pre-test, post-test surveys, or we set out, let me just tell you the aims, we set out to assess the impact of these educational sessions on knowledge about living donation, attitudes about living donation, satisfaction with these sessions and the information provided and the value that participants placed on the culturally competent care provided. Okay, so we did surveys immediately before the first session and then immediately after each respective session. Approximately, just so you have a sense of this, about 10 patients come each month and these sessions occur monthly, so over the course of 10 months we did the surveys. And for each patient I would say that up to five family members slash friends come with them on average about three. And so we had a very high participation rate. We approached 175, 160, consented, 91%. Due to incomplete surveys, our final sample was 137 participants. And briefly it was a relatively young population, half, they were divided by gender. Everyone who's Hispanic, majority 78% were first generation, mostly from Mexico. And only 45% had completed high school or more. 85% had total income of up to 35,000, so the socioeconomic status was relatively low. And then family, friends indicated how they're related to patients, most third of them were the adult child of the patient, 22% were spouse and so on. So with regard to knowledge and attitudes we found a significant increase in the knowledge gained as well as the attitudes becoming more positive toward living donation. And this was apparent for both the patients and for the family members. And one of the things that was really interesting for me was to see that what specific knowledge items were people learning the most. So we had about 20 true, false, multiple choice questions and it turns out that they learned the percent change between the pre-test and the post-test. And the post-test found that the items that they learned the most pertain to the potential donors can donate even if they are not a match for their intended recipient. And another item being that living donors are given priority if they need a kidney transplant in the future. By contrast we were interested what were the items that they had a harder time learning and that would require even greater efforts to educate people in the future at our institution and perhaps at other institutions. And some of the issues were the complications from donating a kidney that seemed to be confusing and they expected time for donors to walk following surgery, so recovery issues. We are also interested in satisfaction with the program in terms of did it address your informational needs and satisfaction overall as well as the value that the participants placed on having a clinician or the clinicians in the program who were bilingual and bicultural Hispanic background. And both patients and families were very rated at very highly, though we found that patients rated their satisfaction and cultural competency scores significantly higher than the families. This is a lot of data and just to highlight a couple things, we were wondering who are the patients and who are the family members who gain the most knowledge or increase their attitudes the most. We found that the family members who were younger and had more education were the ones who gained the most knowledge and favorable attitudes, so just to highlight those. So just to conclude here, our study demonstrated the efficacy of a culturally and linguistically competent educational program in increasing Hispanic patients and family members' knowledge about living donation and favorable attitudes about donation. And the sessions increased all of the participants' levels of knowledge. We found that at baseline there was a strong need for widespread education about donation and transplantation in the Hispanic patient and family populations. On some items, they already had high levels of knowledge regarding, for example, that people can live with one kidney. But future efforts should focus on educating families and patients about transplant facts for which they showed minimal baseline knowledge and minimally improved comprehension between the baseline and post-test surveys. And other transplant centers have expressed interest in modeling their centers after hours and adopting some of our techniques to make theirs more culturally and linguistically competent for their own Hispanic patient population. So there are some things that they could do to improve their own study, their own patients and families' knowledge, like focusing on how kidneys from living donors last longer than kidneys from deceased donors. And that living donors receive priority for our transplant should they need one in the future. And I'm just going to skip this here. With regard to future research, I propose that it would really help to identify which culturally competent elements within the Hispanic transplant program contribute the most to patients and families' knowledge and attitudes and readiness to ask someone to donate. So this would help with future replicability of our program and dissemination elsewhere. It would help to determine whether the program elements disseminated elsewhere would also lead to similar kinds of results and to assess the impact of a culturally and linguistically competent program on living donor rates. And I'd like to acknowledge my colleagues and collaborators and thank you very much for listening. I think I'm the caboose for the afternoon. Thank you all for sticking around. My talk is more of a personal journey that I'd like to share with you. I'm going to be talking a bit about a move I've made this year where I left the Gold Coast or the Magnificent Mile where I worked for about 23 years. And I've moved to the Laundale community. And just to give you a sense of the trajectory of my career. I started as a medical student here at the University of Chicago. I was the first medical student that chose rehabilitation as a career. Raised a lot of eyebrows and questions in people's mind and we all know what a sexy career it is. So I went to Northwestern in 1987 where I was a resident and I graduated in 90. And at the Rehabilitation Institute of Chicago I was offered the opportunity to stay on as an attending physician. My passion at that time was neurological disability. I liked working with the whole neuro access brain injuries, spinal cord injuries, strokes. I've worked a lot with neuromuscular disease, ribopause, spina bifida. So I did that for several years and became increasingly interested in reproductive health care issues for disabled women. And had the opportunity to found and be the medical director for a disabled women's center for a number of years. And it was really through those first formative years of practice that I began to see ethics everywhere. So I'd been in Mark's class as a medical student. And I was feeling a bit at a loss that the kinds of issues I was seeing and experiencing in rehabilitation medicine were issues I felt particularly well equipped to articulate and to think through. So I did come to University of Chicago in 94-95, completed my fellowship and decided I really wanted to spend time trying to map the landscape of what I was calling disability ethics. I was fortunate to be given an endowed chair when I came back to the Rehab Institute which helped support my work in both ethics and women's work. And held that chair up until I left RAC in 2009. I had incredible support and resources through the years. Not just Mark, but Dr. Betz, Strom Donnelly, a number of people who really helped me through that period of time and to have opportunities to do some very interesting and energizing work. But as I was moving through the years, we'd been doing disability ethics for about 15 years, I was taking a step back and thinking about what was my perception now of the most pressing issues? Where were the greatest needs, the most pressing issues, and what I was beginning to think of as translational bioethics? How was I going to take this from the realm of theoretical to actually trying to have an impact? So this gives you a sense of why I did move to the Laundale community. For those of you who don't live in Chicago, the Magnificent Mile is a beautiful area along Michigan Avenue and the lakefront. It's a wealthy community. The average household income is about $129,000. It's predominantly white, educated, employed. There's a low crime rate there and there's just beautiful abundant parks and shopping and restaurants in the area. The Laundale community is a community on the west side and its average household income is about a third less. Predominantly black and Hispanic. It's a large blue-collar population and there's a high unemployment rate. There's also a very high crime rate in Laundale and it's one of those areas we've learned to call food deserts. Not a lot of grocery stores, few shops, not many public places and spaces for children to play. So this slide just gives you a sense of where I'm talking about the geography. We're about six miles southwest of the Gold Coast. So these are some side-by-side pictures. Ralph Lauren on the Michigan Avenue close to the Rehab Institute in Northwestern Memorial Hospital. The shop on the right is one of the shops that I pass as I'm driving to Laundale. One of the things I miss in the Laundale neighborhood are the wonderful coffee shops and places to run and get a great cup of tea. This is an example of Argo Tea. We have abundant restaurants and coffee shops in the Northwestern campus. This is an example again of the sorts of food deserts we see in Laundale. A small grocery store that accepts link cards. So these are the hospitals. And I am wanting to emphasize that a lot of what I've begun to think about these issues have to do with the differences of missions of types of hospitals. So the Rehabilitation Institute of Chicago is on the left. The hospital I'm currently working at is on the right, Schwab Rehabilitation Hospital. There are only three freestanding rehab hospitals in the Chicago area. And Schwab is a hospital that I've known about for years. Many of the doctors are trained at the Rehabilitation Institute. When you look at the differences between the hospital, RIC is a very prominent hospital. It's been judged the number one rehab hospital for 20 years by US News and World Report. It's a tertiary care academic medical center. We're embedded in the Northwestern University Medical Center with Northwestern Memorial Hospital right next door. We're one of the largest physical medicine and rehabilitation residency programs. And the main hospital is 150 beds. There are also 30 sites of care outside of that main hospital. It provides a wide array of rehabilitation services. So we're talking about what I call core services, stroke, traumatic brain injury, spinal cord injury, amputations. But it also has a lot of specialty care services like rehabilitation for pelvic floor weakness and continence after pregnancy and childbirth. Or cancer rehab and chronic pain and musculoskeletal and sports rehab. So a lot of depth in terms of specialty rehab. Schwab, on the other hand, is also a tertiary care, embedded in a tertiary care medical center, but it's not affiliated with the large university. It does have a residency. It's about a third the size of the rehab institute. And it's got an affiliation with the University of Chicago. It's about half the size in terms of the number of beds. It does have both acute and subacute, which RIC does not have a subacute unit. And there are two other sites of care. They're both trauma centers, which I think is also important to point out. Trauma centers in Chicago number four, we've got Northwestern, Sinai Health Systems, Cook County and Christ Hospital. So in terms of the demographics of the hospital, Schwab is predominantly African American. The rehab institute has predominantly white patients. In terms of the breakdown of insurance, the major difference here is between the Medicaid patients. We have many more Medicaid patients at Schwab than the rehab institute of Chicago. And that number is even elevated a bit here because of the number of Medicare patients that we have on the subacute unit. But for me, the biggest reason why I ended up moving has to do with the missions of the medical centers. So RIC is just a phenomenal facility, and it has incredible research and training experiences for physicians. But its mission is really to focus on the high-tech end of rehabilitation to advance human ability through science and research. And you see the picture here at the bottom of a man who's been in the news a lot over the last few years for the bionic arm. So it was at the Rehab Institute of Chicago that they figured out how to connect a prosthesis to nerves in the chest wall and to be able to activate thoughts that could control a prosthesis. So it was a very exciting sorts of work. In the community I moved to, we are part of the Sinai Health System, and their mission is really to be the national model for the delivery of urban health care. Schwab itself specifically says, well, because life doesn't stop for disability. So if you compare the research foci of both of the institutions on the magnificent mile again, we were working on the bionic arm, we've got lots of virtual reality work going on, locomats. We've now got a study doing stem cell research, phase one stem cell research for spinal cord injury. Lots of work on different kinds of robotic therapies, particularly in stroke, and a lot of rehabilitation outcomes research. In Laundale a lot of the research is just focused around what's called the extended care services. So a disability resource center to help people with housing, transportation, employment. The community tech center is a center that's wheelchair accessible, that teaches people with disabilities how to use computers and tries to get them prepared for vocational services. The peer mentoring program is an extraordinary program there. Every patient with a spinal cord injury and traumatic brain injury is assigned a person who's a peer mentor, they are employed by the hospital, and they follow patients throughout the hospital stay, and they also in the spinal cord injury program will continue to maintain contact for six months. So they're there to be sort of the guides to help people through the rehabilitation process as well as what life is like on the other side. In My Shoes is a violence prevention program. It's young men with spinal cord injuries from gunshot wounds who go out into the schools and the surrounding communities and talk about their lives and try to be a force for preventing gang violence. HIV prevention and then death access. This is one of the sort of secrets about the Sinai healthcare system. It has the most incredible communication programs of any hospitals I've ever seen. It's got the largest death access program with three sign language interpreters, and staff as well as three signing physicians, and they've got 12 video relay network programs. About 30% of the patients don't speak English as the primary language, so they have a very rich array of translation services. The other area of research within the system is the Sinai Urban Health Institute, and I just want to tell you a bit about this because this program was something that was really very interesting to me. I was hearing little pieces about it over the last 10 years before I moved to this community, but they have built a program of 32 staff members from the public health world, epidemiologists, research assistants, a large network of clinical educators. They were doing community-based research, I think before we really knew that kind of buzzword and statisticians, and they've been looking at, they did door-to-door neighborhood mapping of the health issues in six neighborhoods in the Chicago area that varied quite dramatically by income and by racial makeup. They identified what some of the most pressing health care issues were, and they've been doing projects for the last 10 years, really working on these. So things like asthma, breast cancer, HIV, diabetes, and obesity work. And so what kind of work has come out of this? What kind of results? Well, they found, for instance, that if you're an African-American man in North Laundale, your life expectancy is about seven years less than average men in Chicago. African-American women with breast cancer are about 117% more likely to die of their breast cancer than white women. About a quarter of the children in North Laundale have asthma, and there's a lot less access to drugs and many more ER visits in the racial minority groups and lower SES levels. And they found a very high percentage of Puerto Ricans in Chicago have diabetes. So I'm hearing about this research, and I'm thinking about, what am I reading and learning and experiencing in my own work around people with disabilities? What are those issues that were becoming much more prominent in my attention? Well, people with disabilities I've always known are more likely to live in poverty. There's some very dramatic data about the income levels of people with disabilities. They're also disproportionately represented in racial and ethnic minority groups. They're more likely to have publicly funded insurance. So issues of Medicare, Medicaid coverage really matter when you're working with people with disabilities. They're also very high users of the healthcare system, and they're less satisfied overall with their healthcare experiences. And we know that the numbers are growing as we have an ever-aging population, and we have technological advances in care for people who are surviving who previously would have died. So what about now when I take the intersection of disability, race, and ethnicity, and I look at what sorts of issues are we learning? Well, we're learning that there are higher rates of arthritis disability in older blacks and Hispanic patients, that that black patients, this study was about two months ago, and it's quite shocking to me, black patients with muscular dystrophies die 10 years younger than their white counterparts. And you look at these ages, 23 versus 33 years, that's a third of their lives. Blacks have more than twice the average specific death rates from stroke that whites aged less than 75 years. This has really been hitting me home since I've made the move. I've written a piece that's in the current issue of the Hastings Center report about one city, two worlds, where I talk about the number of patients I'm seeing who have their strokes late 40s, 50s, who did not have health insurance and they're diagnosed at the time of their stroke with their hypertension and their diabetes. And then we start looking at ways to get them into the health care system. So oftentimes we'll start the process of getting them public aid. It can take three months or longer to get them public aid approved. And so then we're trying to get them health care for their stroke during a window of time, which is particularly important in terms of care. It's a very difficult problem. We know that African Americans and Hispanics also have a lower age at death when they do have strokes. The issue of the spinal cord injury is a very interesting one. And remember again I said both medical centers are trauma centers. Sinai sees a very large number of patients who have gunshot wounds from gang violence. And if you look nationally at the percentage of African American and Hispanics with spinal cord injury, that number is increasing and they're much more likely to have acquired their injuries from violence. So compared 46% of African Americans versus 43% Hispanics, 7% for whites. Those are very dramatic numbers. So when I think about again sort of what visually occurs to me as I look at these two environments, one of the areas of the Gold Coast that most inspired me was the Chagall. And if you're ever down on the Northwestern campus or by the Rehabilitation Institute of Chicago, do walk into the lobby. There is a gorgeous Chagall tapestry. It was Chagall's last work. It hangs from the center of the ceiling in the lobby of the Rehabilitation Institute. It's the story of Job. It is absolutely gorgeous and it was meant to capture the suffering that many people who experience disabilities might be feeling when they first come to a rehabilitation setting. The picture on your right is a picture I pass every day as I'm going to Schwab. And it's extraordinarily poignant. It's a mural that says RIP, Rest in Peace, Little John. It's obviously a memorial for a young man who was killed. And when I think about the Lawndale community and the patients we care for, I think that the issue of what's happening with African American men in our society felt to me before I moved there to be an urgent issue. Now it feels almost like an emergency. You know, when you look at education, you look at employment, you look at the rates of imprisonment, you look at the rates of violence, and you look at the health care status, I think it's an egregious situation. But there's also beauty, lots of beauty in both places. And I couldn't show you a lot of pictures of the interior of the hospital. It's got an old wing and a new wing in Lawndale. And even though it has a lot fewer resources, it's quite a beautiful facility. On the left is what a patient would see from the window on the Gold Coast, looking out at the lake, a beautiful view. On the right, they built a rooftop garden on the new wing of Schwab, which has flowers, koi fish, a wheelchair accessible basketball court. It's absolutely gorgeous. And it's a place that people love to go, patients, family, staff. It's an urban oasis within what can at times be a fairly difficult community and environment. So for me, this has been a move because as I've looked over my career and I've thought a lot about ethics and what really matters in terms of the care of people with disabilities, I've come to think of the issues of self-determination or autonomy, which we talk a lot about in ethics, as being absolutely contingent upon social justice issues. You can't talk about self-determination and autonomy if you don't have reasonable choices, if you don't have opportunities. So for me, this move is to really focus more on the social determinants and to look at health care access and try to figure out how we can go further upstream in terms of even preventing disability. These patients who are having strokes, these patients who are having amputations, we need to be intervening earlier to try to prevent that. So that's one big piece of why I moved. And I'm also still working at Northwestern Medical Humanities and Bioethics because the other thing that I feel quite passionate about is a need to do a lot more on disability curriculum and health care service training. I think across the board where we're talking about physicians, nurses, allied health professionals, we need to be doing a lot more to teach about disability and health care issues. So that's my new life and I hope at some point in the future I'll have some more information to share about concretely the work we're doing right now. We're working on developing an institute on health disparities and disability over in the Lawndale community. Thank you. Those groups have a lot of social determinants in terms of where people live that's socially and socioeconomically segregated, access to care. But I think as we listen to the presentations, one big issue that African-Americans don't face is being able to have a provider who speaks their same language. Now, there may be problems with communication and understanding but it is not at root having them fundamentally speak the same language. I will just add to that. There's trust issues. Both, again, you have Hispanic, African-American minorities and as we heard yesterday, we have primarily majority health care providers who may or may not speak their language have been socialized in medical ease and so may have their own biases, even if they don't probably be the patient. So there's been great work both in the African-American community and in the Hispanic community of just breaking down the trust issues that, or as my family says, no, I am never going to sign an organ donation because they will kill me for my orders. Trust. Now, this is not necessarily a negative because this is something that always comes up. If the patient no longer meets themselves, it's because they receive a dance plan. I'm sorry? That's one much chair. That's one much chair than you feel. I mean, I wouldn't be so cynical and sometimes cynical as to think that that is the reason that people are not referring their patients. I do think that people who work in underserved communities as primary care physicians that we follow as social workers really do want the best for their patients. But that is one medium that's been built.