 The next panel is entitled Neighborhood Effects on Health. And the three speakers will be Elizabeth LeMont, Milda Saunders, and Stacy Lindow. The first speaker will be Elizabeth LeMont, who is a medical oncologist at the Massachusetts General Hospital, an associate professor of medicine and health care policy at Harvard Medical School, her main academic endeavor is research in clinical epidemiology and health services research in cancer in the elderly. Elizabeth worked with us both in oncology and in ethics some years ago. Today's topic for Elizabeth will be associations between area social factors and health care availability. Thanks so much, Dr. Siegler. And thanks to you for the opportunity to present today. And thanks to the McLean's for the wonderful gift that it has allowed this program to develop so beautifully under Mark's leadership. And also, mercifully, thank you for the 25 minutes between Dr. Winberg's talk in mind, because that would have been very difficult to follow directly. So today I'm going to talk about research that our group has been doing recently regarding the associations between area social factors and area health care availability in the urban US. So by way of motivating this, we know from lots of different types of research areas, including work done by Dr. Winberg's group and the research that that has spawned throughout the world, as well as research in the, quote, neighborhoods and health arena, that where a person live is associated with the health care they receive and or the outcomes they experience. The, quote, neighborhoods and health research area has shown that associations between area socioeconomic deprivation and unfavorable cancer outcomes exist across the full continuum in breast and colorectal cancer. So what folks in this research tradition posit is that area social factors lead to patient outcomes. Another possible explanation or an additional explanation is that area social factors and patient outcome associations are perhaps confounded, at least in part, by area health care availability. So to try to get at this issue, we asked sort of the following question. And as that is, are high amounts of area social deprivation associated with low amounts of health care required for the provision of guideline recommended breast and colorectal cancer care? Now, to do this type of research, we needed to think about two types of geospatial constructs. And those were the social and the health care. And so we defined social areas in a convention that is used in the neighborhoods and health research as the urban zip code tabulation areas. And these are essentially census tracks that have been transformed into spatial units that can be described by US census attributes. So we defined different aspects of these spatial zip code tabulation areas using 2,000 US census data. Then in terms of health care areas, we defined those as fully urban Dartmouth hospital service areas. And this is work from Dr. Weinberg's group that maps determined using empirical data areas containing, on average, one to two hospitals wherein most Medicare residents received their care. We were then able to characterize these health service areas using data from 2000 from the American Hospital Association, American Medical Association, and the Food and Drug Administration. So this is a very crude map that shows the square is a hospital service area. Within that are six or seven zip code tabulation areas. So the zip code tabulation areas are the places where people live. And then the HSA, the bigger black box, is the area in which the health care that's available to them is contained. And for this study, there were approximately 3,000 zip code tabulation areas and 465 HSAs. So the analytic approach here was really very simple. We were asking a simple question. Are attributes of social areas associated with the availability of the type of health care needed to provide guideline recommended cancer care for breast and colorectal patients? So when we think of regression models, I often think of predictions. On the right predicts something on the left. That's really not what this is about. It's looking for purely associations. And so on the left are social attributes at the zip code tabulation area. And on the right, there are health care availability and looking strictly for correlations or associations. So how did we start? I'm a medical oncologist who's practiced in urban settings and have read the literature in social neighborhoods and health research. And so I identified things within the US Census code book that I thought were important. The top item is something we had substantive interest at priori. So the number of individuals below the poverty line was something we were very interested in. And that was definitely going to be one of our so-called outcome variables. Or left-hand side variables. Additionally, percent black in the code tabulation area was something we were affirmatively interested in. And then the other variables are all things that I thought would be potentially important in understanding local social support or lack of in an area that would be relevant to receipt of cancer care or cancer-related care. We had concerns legitimately that there would be correlations between these. And so we did a factor analysis to try to come up with a composite, one or two composite variables that captured some of this. And so as you can see, there was a high factor loading for a number of variables, including patients being below the, or rather, neighborhoods where individuals were below the poverty line, were disabled, where there were a high proportion of female-headed households. High proportion of households were grandparents, were taking care of grandchildren, houses with no telephones, and individuals receiving SSI or unemployed. So we were able to create a factor that we called socioeconomic disadvantage. Similarly, we found that neighborhoods with high amounts of foreign-born individuals and neighborhoods with high amounts of linguistically isolated individuals. And that means no one in the household speaks English. Those were highly correlated. And we created a composite variable that we termed ethnic isolation. So our final four variables, so four models, the outcome variables were poverty, percent poverty, percent black, and then the socioeconomic disadvantage and ethnic isolation. Now, this slide shows the variables that we were interested in priori in terms of the availability of healthcare needed for the provision of guideline recommended breast and colorectal care across the cancer continuum. So we divided this intuitively into breast and colorectal cancer screening, breast and colorectal cancer treatment, and breast and colorectal post-treatment surveillance. And within each of these domains, there are data from different sources that I've mentioned before to try to capture that. And so specifically the gastroenterology MDs, the cancer screening MDs, medical oncologists, radiation oncologists, all of those are from the AMA data. The mammogram facilities are from the FDA and hospital attributes are from the AHA data and that includes general medical surgical hospitals, hospital beds, oncology hospitals and operating rooms. And you can see here the sort of the mean count of these entities per 100,000 residents in an HSA. Okay, so I should have warned you prior to turning this slide on. So these are our results. And what this represents are a series of models. This is the outcome variable, percent poverty for one whole set of models. Percent black is the outcome variable for another set of models here. Socioeconomic deprivation, the third set of models and ethnic isolation in the fourth. And then what we did was systematically look for associations between these social factors and these healthcare availability of healthcare within the HSA. And astoundingly we found almost no association for any of these things. The starred coefficients or measures of association are small in magnitude and if you look closer what you see are essentially U-shaped associations in these areas. So we found that there was a quote significant association between cancer screening MDs and area poverty. Well, if you break area poverty into quintiles what you'll see is that there is not a monotonic relationship between area poverty and decrease in the cancer specialists in the area. Similarly, the chart below that shows area deprivation versus GI MDs and cancer screening MDs. Again, it's not a monotonic decrease as we had predicted or had posited at the time of the study design. So what we can conclude from this is that markers of area social economic deprivation were not associated with the amount of healthcare required for provision of guideline recommended breast and colorectal care. Unfavorable breast and colorectal cancer outcomes among individuals living in impoverished areas may occur despite apparent adequate healthcare supply. There's certainly many caveats to the statement. One is that this is a purely ecological study that compares attributes of one geography to another. There are no patients at all being studied here. It does not address whether individuals are able to access the available care. So maybe the care is in the neighborhood, maybe it's available, but there's no way for them, the patient to get to the hospital. No one to watch these grandchildren. You know, there's vast literature on access to care. It also doesn't address the quality of the available care. I mean, what if they have the same number of oncologists, but the ones in the poor neighborhoods aren't board certified or are frankly not good doctors by whatever metric you use. And then the results are limited to cancer related healthcare supply in the urban US. We decided that it would be wrong to conflate urban and rural and suburban. And so we started with the urban US. And I wanna acknowledge the great team that I have the privilege of working with at HMS, Yulei He and Alan Soslovsky who are faculty statisticians at the Harvard School of Public Health, Subu Subramanian who's a geographer. And I wanted to acknowledge Jeff Blossom from the Harvard GIS group who helped us with geographic data and Lorraine Manitas who's part of our lab, who's a fantastic programmer and person all around. So thank you very much. I appreciate your time. Next speaker, I will be Dr. Milt Moldes-Sonders who's an instructor in medicine in the Department of Medicine at the University of Chicago and faculty member of the McLean Center. Milder is currently studying neighborhood characteristics associated with the time on renal transplant waiting lists and her general research interests concern the social determinants of healthcare disparities. Today Milder will speak to us about geographic variation in dialysis facility quality. Milder. So today I'm gonna talk about geographic variation in dialysis facility quality. So during our time today I'll go over some background, talk about my research questions, methods, results, and then conclusions and next steps. So we know that there are important disparities in in-stage renal disease care. African-Americans are less likely than whites to be rated as appropriate candidates for transplantation and of those deemed appropriate, they're less likely to be referred for evaluation or placed on the transplant waiting list. Additionally, African-Americans with in-stage renal disease have on average a lower hemodialysis dose and worse anemia management. Now these disparities are important because they translate into important differences in morbidity, mortality, and quality of life. So the question is, are these racial disparities explained in part by differences in dialysis facility quality and is that determined by location? So we know from the social science literature the neighborhood plays an important role in education, employment, and income outcomes. However, recent studies have shown important health outcomes are affected by neighborhood above and beyond individual characteristics. So what do we know about in-stage renal disease care? So we do know that individual differences are important. They're important differences in biology, in patient preferences, and in patient behavior. However, even when you take these things into account, we know that there are state and regional variation in dialysis adequacy, that neighborhood poverty and increasing African-American population in a neighborhood is associated with a longer time to transplant wait list, and in unadjusted analyses, facilities that have in predominantly African-American communities have worse mortality outcomes. So this is important because in the US, location is socially mediated. That is who you are determines where you live. On the yellow map, we can see that African-Americans are largely concentrated in urban areas and in the South. And just to locate you, the darker colors indicate counties with higher density of African-Americans. And the map, the white map, shows that even within these communities, African-Americans and whites live separately. As you look at the larger pink dots, those indicate larger areas of racial segregation. So these geographic differences may lead to important differences in access to care and the quality of care. And here, we spoke specifically on dialysis facilities because dialysis facilities are an important unit of analysis and site of intervention for patients with insagerinal disease because most patients have both their care and their access to care and access to health information at these dialysis facilities. So the research question is, what is the association between dialysis facility, community or neighborhood, regional level factors, and dialysis facility quality? And we'll look at facility characteristics, neighborhood characteristics, and region. So for data, we use the Center for Medicare and Medicaid Services Dialysis Facility Compare file, which contained information from 2009 on all CMS certified dialysis facilities, almost 6,000. And we link those using zip code to 2,000 US Census data for the demographic information. So the three main outcomes were anemia management, that is the percentage of Medicare patients whose anemia was controlled. And that was defined as an hemoglobin between 10 and 12. The proportion of patients who had appropriate dialysis, which is defined as a urea reduction rate of greater than 65. And then expected mortality. So the facilities expected patient survival compared to actual patient survival after adjusting for individual characteristics. The variables were facility variables, profit status, the size, and whether it was a chain or not. The neighborhood characteristics that were important were the proportion of African-Americans and the proportion below poverty, which are related but separate dimensions. And region, there are 18 US renal disease networks, and they were collapsed into four geographic regions, South, Northeast, Midwest, and West. This is the same variables in an equation. And so these are the basic results, looking at the universe of dialysis facilities. So we can see that fully of all takers, 72% of patients who receive dialysis have a good hemoglobin. That is within 10 to 12. Almost 95% of patients who receive dialysis have adequate dialysis. And the survival was normed. So 10% have a worse than expected survival in dialysis facilities. And this is the result of ongoing measures, ongoing efforts to improve quality in dialysis facilities. So for the analysis, it's unfortunate that we don't have great spread, but it's beneficial for the patients that most patients have good outcomes. So this, you don't need to, I just put this up here to prove that the analysis is done, but we'll actually digest this. So we can see that there are certain things that are important in the analysis. So when looking at anemia management, chain size, chain, sorry, the size of the dialysis facility, the percentage of African-Americans and Southern region were important. So overall for anemia management, we know that having an increased proportion of African-Americans in the neighborhood is associated with worse anemia management, but neighborhood poverty did not significantly affect facility anemia outcomes. And facilities in the South have worse anemia management. Looking at a similar table, except for dialysis adequacy, we can see that there are similar results that are significant. So profit status, chain, size, and the percent African-Americans as well as the region is also important. And so we also conclude that having an increased proportion of African-Americans in the neighborhood is associated with worse dialysis adequacy and that the impact is greater for lower quality facilities, but that neighborhood poverty did not significantly increase facility outcomes for dialysis adequacy. But then other variables such as profit status, chain were also important and that we're also important. And then our final analysis looked at the outcome of mortality. And we can see similarly that profit status, chain size, proportion of African-Americans, percent poverty, and then region, so South being the worst, were important. And so we see that compared to facilities in the South, facilities in all other regions in the West, the Midwest and Northeast were less likely to report that patient survival was worse than expected. And then also for each one percentage increase in African-Americans in the neighborhood, facilities were 3.2 times more likely to report that patient survival was worse. And then also for each one percentage increase in the proportion of the population below poverty, facilities were eight times more likely to report that patient survival was worse than expected. So we conclude from our analysis that location plays an important role in dialysis facility quality. Dialysis facilities in the South are more likely to have higher than expected mortality and worse anemia management. Facilities located in neighborhoods with a higher proportion of African-Americans were worse on all outcomes. So they had higher mortality, lower dialysis adequacy, and worse anemia management. And location and also characteristic specific quality initiatives can play an important role in decreasing racial disparities and end stage renal disease quality. So this work has some limitations. So in this particular analysis, we were unable to control for individual characteristics. And we also use zip code, specifically zip code tabulation areas, were used as a proxy for neighborhood with the thought that people dialized close to where they live and that this was a reasonable approximation of access. So our next step, so future work will link individuals within dialysis centers so that we can control for the individual characteristics as well as facility and area and will determine the relative importance of these various levels, individual, facility, neighborhood, and region. And so I wanna acknowledge my research and mentorship team, and then I find me. Thanks. Thank you so much, Mulder. The third speaker on the panel will be Stacey Lindow, an associate professor of obstetrics and gynecology and geriatrics at the University of Chicago, affiliated with the McLean Center as a faculty member. Stacey's focus of research is on patient care, education and advocacy relating to the health of older women and underserved populations. Dr. Lindow is the director of the program in integrative sexual medicine, a clinic that addresses and studies sexual concerns, problems, and dysfunction for women, many of whom have sexual health concerns caused by cancer or the treatment of cancer today, Stacey will be speaking to us about empirically defining the intersectoral health system in a high poverty urban area. Stacey Lindow. Good morning, south side of Chicago. Yes, thank you. Good morning. Mark, thank you. The McLean Center has been a tremendous intellectual stimulant and home for me throughout my experience at the University of Chicago. I wanna thank the McLean's as well for their very generous and ongoing support. And it's an honor to participate in the conference today. I always feel I learn much more than I can contribute when I participate, but with the prior speakers and the comments of Dr. Wenberg and others, I'm gonna put a little bit of a different spin, I think both on the notion of health reform and on this new conversation here about how the social environment and the neighborhood environment relates to health. So I'll start with an example from my clinical practice, which Mark mentioned. You know, imagine a woman in her 60s who has been diagnosed with breast cancer. She's had mastectomy. She's been treated with roma taste inhibitors to reduce her likelihood of having a breast cancer recurrence. She comes to see me because she's having difficulty having sexual intercourse, a symptom that nobody ever mentioned when she was diagnosed or initiated on treatments for her breast cancer. She feels depressed. Her relationship is in distress. She's worried her spouse is going to leave her and if he did, she'd be left really with no income. She needs things like vaginal lubricants to make her sexual functioning better. She probably needs a psychologist, maybe with special expertise in sex therapy to address her sexual relationship. She would benefit from support from a cancer wellness center. She might need vaginal dilators. She might need job training if her relationship is going to come to an end. And the first many years of my career here at the University of Chicago have been spent studying sexuality and how it relates to health and health outcomes. The clinic where we treat sexual problems in women and girls with cancer was an opportunity to translate the knowledge we discovered by studying sexuality in older ages and in the context of disease. And so finally, an opportunity to give back to patients what we've learned through research to improve their health outcomes. And of course the story I'm telling you begs the question now that I've been able to perhaps in the clinical setting address the sexuality concerns, explain to the patient why she's having the problem and even tell her what I think she might be able to do. Now we're left with the challenge of where on earth is she gonna go to get these services? So the abbreviated title of the talk is What Health System? And it's the question that really my work in sexuality has led me to. And through the institution of the Urban Health Initiative at the University of Chicago and some resources that came my way to get involved with the Urban Health Initiative, I've both been able to and have felt a responsibility to begin to work on this particular question. So the work I'm gonna talk about today happens within the auspices of something called the South Side Health and Vitality Studies. And it is an important research component of the Urban Health Initiative, although it's only one piece of research that's going on in the context of that initiative. The research takes a community engaged approach and so a slide is not big enough truly to identify all the players who've been involved in doing this work, but this lists many of the really active collaborators at this point. And they include collaborators and consultants from other campuses, including my friend and good colleague John Skinner from Dartmouth and Mitch Katz who's now the heads LA County Health in California. So the charter's been invoked over the last couple of days and this is the piece of the charter that interests me with respect to this work, the principle of social justice. The medical profession must promote justice in the healthcare system, including the fair distribution of healthcare resources. Physicians should work actively to eliminate discrimination in healthcare, whether based on race, gender, socioeconomic status, ethnicity, religion, or any other social category. And I would argue that place, neighborhood, community is perhaps another social category, which relates to these other factors, but isn't clearly stated here. And the Institute of Medicine and the World Health Organization over the last several years, but most recently reiterated at the end of last year, are talking about not a public health system, but a health system, not a healthcare system, but a health system and this concept of intersectoral system, which is just a mouthful and doesn't resonate well in the community, but it's been repeated. The intersectoral health system comprises the government public health agencies and various partners, including communities, the clinical care delivery system, employers and business, the mass media and academe. This is the new concept from the perspective of the Institute of Medicine and others of the health system. And it is the collective influence and responsibility that all sectors have for creating and sustaining the necessary conditions for health. So it goes beyond the patient-physician interaction, beyond our clinical systems of care and into this much broader societal responsibility for health. So here's one way of looking at what is the health system on the south side of Chicago. I would argue there's never been a health system on the south side of Chicago and this is probably true for most communities. When you really ask the question, what is the health system? You know, it's mind-boggling that we don't even really know. The South Side Health Care Collaborative is a system that actually has been proactively built through the Urban Health Initiative. The work started with now First Lady Michelle Obama and it's grown into a network of, I hope my mentor, Marshall Chin, isn't leaving because he's disappointed with me. I'll be a Marshall. It's a network of, he'll get me back for that for sure, a network now of 35 health centers, federally qualified health centers, free clinics, hospitals, functioning on the south side of Chicago. One private physician's office, last I heard, sitting around the table regularly to figure out who does what best, how can we work together, how do we best distribute limited resources? And this is a really good start. There's a long way to go but maybe that's an answer to what's the health system. When we look at the city of Chicago by its 77 community areas stratifying by the distribution of income in the region, we see with the darkest shading being places where 48 to 65% of households using imputed 2008 data are living at or below an income of $25,000 a year. That's about the federal poverty line for a family of four. And you see quickly that the University of Chicago, like many other urban academic institutions, is surrounded by poverty and therefore one might argue has an interest in, if not a responsibility to be thinking about how those social conditions relate to the population from which it hires, the population it treats, the population that is our neighbors. Here's a street, a typical street I would say in a business district on the south side of Chicago. This comes from a Google satellite image and it's 79th street on the border between South Shore and South Chicago. And if you look quickly at this picture, you know, it's daytime. We see a woman walking alone, talking on her cell phone. We see four businesses to the very edge of the picture. You might start to see an empty lot. You see litter on the ground. You don't see any cars parked along the street. You know, what does this say to us? What does this really tell us about place? And if we go deeper into some of the data we've been collecting around the community, we can see that there are four kinds of businesses here. A cab company that has a street presence on a business district street, but doesn't serve people walking up and down the street necessarily, pay less submarines, which is closed with a prison-like gate. Balloons Plus, which is open, and a professional hair braiding place, which is arguably, you know, maybe of these four, the place that, given the choice that somebody might walk into. There are many deficit-based models of looking at the way in which community relates to health. Social disorganization theory has its birth. We can claim its birth as the great work of the Chicago School of Economics and has been very, very influential. We're taking maybe, what was the term, an unrealistic optimist view or just a dispositional optimist view of urban life and health on the south side of Chicago. And we've been starting to conceptualize how it is that place, the built assets, the places that offer goods and services in the community might relate to health. There may be some basic survival functions that our urban places provide. Safety features just by virtue of being present and open, being a destination, providing services like access to the internet that can give people information for their management of their life and perhaps safety. And then these other humanities sort of features like history, culture, aesthetic, social interaction that are important for people feeling that they belong. And if you remember Abraham Maslow's basic needs, these belonging, solidarity, safety and basic survival are the three base levels in that pyramid of basic needs and that's the lens through which we see how place relates to potentially urban health. So I'm going to just very briefly show you some pictures of the methods we've been using to quantify to directly observe the places and assets in the community to triangulate against secondary data sets like Dunn and Bradstreet, like Google or Yelp, like data sets we could get from FDA about where places and services are that relate specifically to health, with the colleagues at Computation Institute here. We've developed a web-based mapping application Eugene Sadu really worked on this that allows people to walk up and down the streets and capture information about assets into a smartphone that goes to an internet website. Our scientists are high school students hired from the communities where we're doing this data collection. There's a whole interesting dimension to that but you can imagine the many good things that come from engaging in the community in this way. And we can start to look at what kinds of services, what places are really there and we can ask whether the data we have available about places are, how accurate they are and if they're not accurate, what does that mean for the kinds of analyses that we're doing relating the built environment to health outcomes. So we just, I'm interested in geriatrics. We queried senior housing in the community of Grand Boulevard, Chicago. We get a Google map. We see one or two, we get the whole picture of the greater Chicagoland area and we see one place that is a senior housing facility. We go to Yelp, do the same query. We get a similar picture, one place. And when we look at the data on a website called SouthSideHealth.org created by this work from data collected by high school students working under our training and supervision, we find 12 or 15 places that appear to be places where seniors might go for housing. So if we use the Google or Yelp data for our analyses about whether senior housing relates to other characteristics of the community, we might get a different result than if we use data directly observed from the community. So let's think quickly about how, what the features are of a health system. Remember this intersectoral health system that could help prevent diabetes in our community. Again, using the data we're collecting through this on the street, feed on the street mapping method. Here are all the clinics in the 12 communities. We've now mapped 13, but this shows you data from 12. Fitness centers, looks pretty good, maybe. Remember the degree of poverty in these communities. Couple weight loss centers, some grocery stores. And now let's look at a health system that could help people manage diabetes. And to me, this is very analogous to the way Elizabeth presented data about screening for cancer, treatment of cancer. We could plug in cancer here. So there are pharmacies or some communities where it's pretty hard to get to a pharmacy, especially if you're an older person, limited mobility. If you need glasses in West Englewood, Englewood, Greater Auburn Gresham, you've got a long way to go. Likewise with podiatrists, dentists, there are a few more of those. Few dialysis centers and some alternative medicine centers. So that is the lived experience of people in our communities. God forbid, let's say you drink the Kool-Aid and you're ready to prevent diabetes. Good luck finding the places that are gonna help you be healthy after you try to sort through the fast food restaurants. So in that same Institute of Medicine report, the comment was made that it is what we do as a society to create the conditions in which people can be healthy that will determine the future of the health of our population. And here's another way of looking at the data I just presented to you. Select diabetes related assets per 10,000 population in 11 communities. We have more fast food restaurants per 10,000 population than we do all those other things combined. This is obviously just a select set of assets that might be relevant. And I wanna point out the sad reality that it appears we have more dialysis centers per 10,000 population than we do weight loss facilities. And that's a problem given the amount of fast food. This is so simplistic, it's embarrassing, but it does really enlighten us to what our patients in our population is seeing. We can look, because we're tracking data over time, it gains and losses by sector in the population. This is just over one year. Now, it's a little deceiving that the x-axis there is between minus 10% and plus 10% change. We see loss of about four social services centers, loss of four and gain of two outpatient health clinics and a predominant gain in the fast food industry despite the terrible economy during this timeframe. So we are, I really just shared with you the rationale and the methodology for how we're going about empirically defining the health system on the south side of Chicago, hopefully in a way that translates to other communities where we wanna understand what are the assets, how do these places and services relate to health of people living and moving through our communities? And community members have really asked us to drill down on how digital communication technology, cell phones and internet can be used to either help people get to the assets they need to be healthy or substitute or make up for the fact that they're not there. And I'll end with this work from Russell Groen and colleagues. He's a surgeon with a Commonwealth fellow when he worked on this framework, model of physician responsibility in relation to influences on health. It tells the story of moving from individual patient care, access issues which we know are important in which the Accountable Care Act attempts to address to direct socioeconomic influences. How good is it to give a patient recommendations about where to go if we really have no idea what's available and whether they can access it and then issues of quality, et cetera. I think I am inspired to move into domains of professional aspiration. What are the broad socioeconomic influences and even global health influences? And work is going on by many people in this room in those areas and we should continue to do it. I think it's a struggle to figure out how to get even beyond the doctor-patient relationship. So thank you very much for the opportunity to present. I look forward to your questions and conversation with the panel. I think we have time for a few questions for the panelists. Please go to a microphone and identify yourself. Milda, you showed independent effects of the chain type and for-profit status as well as obviously the percent of black population. Is there also a mediating effect there in this sense? If you were to take the percent black population out of the equation, does the effect of the chain size and type go up? And if so, what is, can you say a little more about what are these differences? Is there certain types of dialysis businesses that tend to sweep into your areas or tend to attract, get started in areas where there's more poverty and so on? Yeah, so we know that the chain size and profit status are important. So if you had a choice, you would want to go to medium size or large size, independent dialysis facility. And so it's not just the chain itself, they're not all bad, but I think that there's a larger number of the larger chains in urban poor areas. And more importantly, they're newer. And so the longer you've been at it, the better you get at it. So also the year of establishment, if you've been there for a long time, then you get your processes down. And so I think as you come into a community in a new way, then that also has an impact. And so a lot of these dialysis centers are not new, they've just been bought and sold by different entities. Thank you. Stacey, thank you for a very thought provoking talk. I have a question for you. I want you to pontificate a little bit about why we have this sort of the fast food restaurants like the last few slides you showed up. Do you think that's related to the choices that people have in terms of valuing health versus other things? So for example, maybe the society or the community would value being able to work two jobs and not have to cook, right? Over having better diabetes outcomes. I know there are multifactorial reasons why we have food deserts and things like that, but what does this say about the values of the society or the community has itself? Has there been work on that, that this is actually we prioritize it this way? And it's not that we just don't understand that this is not good for our health, but there are other things that we do and we prioritize other things. Well, I appreciate the question. I think it's somewhat, I could pontificate, but it's important to be evidence-based, and it's outside the realm of my expertise to fully answer that question at the individual level. Having said that, the market is pretty good at responding to demand. I mean, that's what markets do, and part of the explanation for why there are so many fast food restaurants is because they are sustainable businesses. There's demand and the demand continues. There's a great deal of literature that suggests that the success of fast food restaurants in poor communities relates to costs, the relative, it's cheap to get a meal, it's fast. So time is of essence for people who are managing jobs that are far, far away and have to take slow transportation to get to and have children to manage at the same time. And there's some evidence that there may be some biological preferences created by early life exposure to high salt, high sugar, high fat meals that literally may change the biochemistry of people's sensory function, their taste and their sense of smell and appetite and desire that are influenced by early exposure to these food types. To some degree, I'm interested in how can we create health in spite of people. In other words, and I think that's where the kind of the aesthetic, the humanities view or the humanities angle on how urban areas might be healthier. How do we instill kind of hope and different choices by giving people dignity through the ways they interact with the built environment. If it's a beautiful place, if the food is presented in an appealing way, if it's a socially pleasant place to go and if it meets people's needs, I think there's a better chance of making, if making change at the individual level and certainly pointing fingers or blaming people, I don't think is the way to get there. Thank you. I'm gonna ask the last question. My question is for Milda and Elizabeth. This intense data set that Stacey is gathering here on the Southside, the Southside Health and Vitality Project. In light of the kind of work that you're doing on dialysis and Elizabeth on cancer, would data sets like that from other areas or this area itself contribute to advancing the kind of work that you've presented and would be interested in doing in the future? That's sort of my question. Be doing it, please. So with dialysis facilities, I think it's, you know, I think Stacey's analysis is interesting to compare dialysis facilities compared to other health and wellness entities. I mean, I think that's just an interesting sort of statement in how the communities are created. Luckily for dialysis facilities, because they need to be certified, they don't usually go missing. So they're in the traditional databases, but I think what is often lacking is sort of looking at the entity that you're interested in sort of mapped onto the broader range of people's experiences. And we know that where people go for their healthcare is determined not just by where the facility is in relation to where they live, but what's on the corner. So maybe they can't get to the bus stop to actually get to the dialysis facility because that's just not a safe space. So I do think that those sort of more enriched databases can help us answer questions in a way that we wouldn't be able to. Thank you. Two thoughts to your question, Mark. One is that had I had the time we could have talked more about how to characterize quote neighborhoods and one can do it through administrative data looking where people live in terms of their census tract, their zip code, that sort of thing. And certainly if you like large ends that's a very attractive thing to do. But what Stacey is doing and what others have really pioneered at the University of Chicago are determining neighborhoods based on actually what residents think and what they think their neighborhood is and what the boundaries are. And so that's really DeNovo data collection and mapping of areas that are based probably more socially rather than administratively related to a zip code. So that's one important dichotomy in the neighborhoods in health research. And I think what Stacey is doing is scientifically much more rigorous and that that's the direction hopefully this research will move in. The second is that this whole issue of accessibility of care will hopefully be able to be in part answered through this DeNovo data collection. For example, are there bus stops near elderly housing? Are there public phones that work? I mean, sort of very basic things that have to do with accessibility of care. And so I think, again, characterizing neighborhoods through empirical methods of counting facilities, counting travel options, things like that I think will add immeasurably to our understanding of why it would seem that even in the face of adequate amounts of healthcare, there are these terrible outcomes across the whole cancer continuum. And what is it? Is it access? And if so, what are, I'm sure it's multifactorial, but if it is in part related to access, like exactly what is it and what do we need to do to fix it? Thank you, wonderful panel. Thank you all three very much. Yeah. For those of you who are worrying about us falling a few minutes behind, we'll put lunch off for about 15 minutes. Our next panel is about a book that Jason Carlawish has written called Open Wound. Jason is a professor of medicine and medical ethics and a senior fellow at the Bioethics Center at the University of Pennsylvania. He did his medical studies at Northwestern and trained in internal medicine and geriatrics at Johns Hopkins. His research work has been in bioethics and his clinical practice focuses on the diagnosis and treatment of patients with Alzheimer's disease and related disorders. This book written as a novel is Jason's first novel. It's called Open Wound, The Tragic Obsession of Dr. William Beaumont. And today Jason's talk will be American social and political norms and the concept of professionalism. The two respondents to the talk will be Dan Salmezzi from geriatrician at the University of Chicago and the McLean Center and Allison Winter, professor of history at the University of Chicago. So Jason will lead off and then we'll have our two respondents and a few minutes for a panel. Jason. Yeah, so I did have a few slides that would prove to you that these were real characters at a real time or as the publisher insisted that the novel say based on a true story. And I'll talk a bit more about that issue, you know why a novel and why not a history. And I do, I wanna thank Mark Siegler, Dr. Siegler for inviting me here. And I wanna thank the McLean Center as well for not just supporting this conference, but for supporting me. In fact, I don't think I'd be here if it wasn't for the McLean Center. And I don't mean that here talking, but doing what I did in my career. It was a key moment at a key time that allowed me to pursue some interests that I had. And I frankly think that without it, I'm not sure what I'd be doing, but I don't think I'd be up. I don't know. What ifs that I'd rather not engage in anymore? Three years ago, I was, I went to Grand Rounds in the University of Pennsylvania, Department of Medicine, Grand Rounds. And I was deep into trying to finish this novel, kind of caught in some ruts. And the Grand Rounds speaker that day was sort of helped me finish the book. And the speaker was Jim Wilson, who is a physician and researcher at Penn. And he has had a longstanding research interest in studying how you can manipulate genes to treat diseases that have a genetic basis. And at his, you may recognize his name because Wilson was the lead investigator of cutting edge research to test of whether you could insert a virus with a gene into a human who had a very rare genetic disease. And if that virus was, with the genetic manipulation was up taken, you could almost essentially cure the disease. So if this research worked, Wilson would not simply have cured a uncommon and genetic disorder, but he would have basically opened up a very exciting and promising new field of therapy, namely gene therapy. But the progress of his experiments came to an abrupt halt in 1999. And I think that's why some of you may recognize his name. In September of 1999, Jesse Gelsinger, an 18-year-old man with this rare genetic disease, Wilson was studying, died in a Philadelphia hospital. He was a participant in Wilson's studies. Three days earlier, he'd been injected with a genetically modified virus and to try to correct the cause of his disease and died in a fulminant kind of inflammatory action three days later. The drama created by Jesse Gelsinger's death and the high-tech circumstances of it were soon eclipsed by a larger and even more infrawling story, which was that the nation began to learn how Wilson and his colleagues who were responsible for the study and for Gelsinger's well-being had multiple other commitments than those commitments. They were not simply out to cure people with OTC deficiency, this rare disorder, and advanced gene therapy, but they also had commitments to their careers and to investments in their science. They had patents on the gene viral vector they were testing. They had corporate interests in the inventions that they held. Some accused that they were quite literally banking on their results. In the lecture that Wilson was giving some decade later after the death of Gelsinger was a lecture he periodically gives, it's his reflections on what led up to that failed study, what he's learned from it, and how the experience has changed him. It's a very moving lecture and I was privileged to attend it. During the lecture, Wilson asked himself out loud what motivated me as a physician and what was the impact of this motivation on the decisions I made on a daily basis? It's his effort. And his immediate answer was, well to help people with rare and lethal diseases, but he admitted that that sort of standard answer was really not a complete answer. And he went on to say this. He said, we would be fooling ourselves if that was the only force that motivated us. We are in a tremendously competitive profession. To succeed, you have to do certain things. The academic treadmill, it's hard to get off once you get on. You need to succeed. There's this vague view of recognition and with recognition comes these tangible things such as papers. You need these to compete successfully. The competition plays a major role in how we behave. And then he concluded with this reflection, which I'll read to you. He said, these subjects deserve better, a protocol that's not tainted with conflict of interest and not tainted with our own professional agenda. It was that moment when I heard that quote, that I took that quote and also a quote from DeTuckville that America was a spectacle for which the world had not been prepared by the history of the past to frame the start of open wound the tragic obsession of Dr. William Beaumont. Because I think what Wilson was saying, and I'm sorry that he had to say it with the context that got him to that realization, is that the idea of scientists as dispassionate actors who work only for a decent wage and peer recognition and are out to make the world a better place and cure diseases is an ideal of the modern progressive age, but it is frankly a myth. And the reality is that while cases such as Gelsinger Extreme, fortunately research participants rarely die, that what that case revealed and his reflections on his case is that scientists are in fact all too human. Their professional agenda is all too human. And that's why I wrote this book and why I decided to write it as a novel. So the story of William Beaumont and his tragic obsession begins long ago, June 6, 1822. He, America at the time was more unsettled than settled. The United States reached to about the Mississippi River and many felt especially residents of the East Coast. That says about as far as we need to go. The river's a natural boundary. We can sort of stop there and let the buffalo and the antelope roam the Native Americans who were pushing further westward will be there and we'll just trade with Europe and that'll all be good, so much for that. The story takes place, it really took place on an island that may be familiar to many of you as a hot vacation site and apparently a leading site of the fudge industry, which is Mackinac Island, which is way up on the straits where Lake Huron and Lake Michigan meet. And at the time, this city for example didn't exist. It was a fort and some shacks but Chicago was just a future idea. Beaumont was there as an assistant surgeon in the United States Army. He was the only surgeon on this island that was a major hub of fur trapping trade at the time. And on that morning, on June, the young man, Alexis Sammartin, who was a French Canadian and an indentured servant to the American Fur Company was in the American Fur Company's supply store and the structure is still there. You can go visit it. It's probably much reworked from its original shape. But the American Fur Company at the time in America was like the G.E. Ford Apple or whatever. It was the biggest company in America. And in fact, its owner was John Jacob Astor of the Astor family of New York who gave us the public library and other things. One of the great, by the way, elder abuse scandals of the 20th century, Mrs. Astor's estate being robbed by her children. But Jacob Astor was a self-made man. He used to be a baker in Germany and immigrated to America and the rest is history. He became one of America's first multi-millionaires. Alexis was in the store and someone set down a shotgun loaded for duck and the shotgun, I guess, discharged accidentally and blew his side off right around here. And Alexis, of course, would survive this shooting. Courtesy of the administrations of Dr. Beaumont. Beaumont had been a surgeon in the War of 1812 and frankly had learned to take care of gunshot wounds really well. There's no better training than to take care of sick people and he took care of a lot of gunshot wounds. The wound, which I could show you some slides because it usually gets the crowd kind of a little stirred up. I can often see when I show these slides. But what happened was that Alexis would survive but the hole ultimately that would exist would not never heal over. So that he had the size of an American eagle dollar as Beaumont described it. A hole that if he sort of coughed or strained his stomach, the inner lining of the stomach would bloom out and Beaumont would describe it as a large blooming rose and you could just shove it back in. And if he ate, all the food would come out so you had to keep a lint plug in the hole to keep it from food coming out. And this hole Beaumont realized would become a window to study gastric digestion. And Beaumont over time would transform Alexis into sort of a living physiology laboratory. You could put food in, you could take food out, you put on a little silk string and shove it through the hole, time it, take it out, look what happened, time it, take it out. He figured, he discovered that if you took a rubber tube and shoved it into the hole and sort of moved it around, he would start to stimulate the production of what he didn't realize at the time was gastric acid because he called it gastric juice and that would trickle out into a little jar and he would save it and put food in that and whatnot. And he began over time these studies of gastric digestion and that's the history in a nutshell. And we read it and we, to get the truth, excuse me, to get the facts but I would argue that we read fiction for the truth. So I was, let's give you a, this is a physician who was apprentice trained, worked in the army, never did any research and I imagined how after his patient had recovered from this horrible wound by his very miraculous, very skilled care, I imagined to myself the day that he, that this happened. By early October, three months after the shooting, summer was fast vanishing. Days were shorter but the lights brighter as if the sun were burning more intensely in a feudal gesture to stall the onset of winter. The agents from the American fur company and the American soldiers and their officers prepared Mackinac Island for the interminable months of frozen isolation. The brigades of voyagers and Indians dismantled their tent and lean to village along the lakeshore and embarked in their bateau and canoe and paddled north into Canada or south into Michigan. The white children returned to school. Alexis's days had settled into a routine which began when Beaumont stepped into the infirmary of the Ramshackle Hospital carrying his basket of medical supplies. Good morning, Alexis. He smiled as he watched Alexis yawn and rub the mount of his palms against his eyes. Good evening, Mon Dr. Beaumont, Alexis laughed. Good morning, morning. His accent in English ran hard on the D's while of the R's. Still sore from his wound, Alexis lay flat upon his back, gathered his nightshirt under his armpits, then folded over the thin blanket to reveal his abdomen swaddled with the bandages. Beaumont had applied the previous evening. Beaumont took care to wrap the bandages tightly around Alexis's torso from his chest to his navel. The bandages themselves revealed the progress of the wound's healing. It had been at least four weeks since the outer layer showed the ruddy stain of discharge. As usual, Alexis gazed straight up into the ceiling waiting patiently, blinking. Madam Beaumont, she's well. She's well, quite well. Alexis nodded and smiled. Little Sarah, very well, thank you. They wish you well too, Alexis. Now please, if you could just lie still, still as usual. Beside Alexis's cot, Beaumont placed the simple brown wicker basket that held bandage rolls, a surgeon's pocket kit, and a bottle of diluted acid. He had gathered from the supply room. He sat on the edge of the bed, just inches from Alexis, the bed frame creaked, as it always did. Beaumont took out a surgeon's kit from the basket, unrolled it on the mattress, took up his jackknife, and set to work methodically cutting away the dressings. He folded away the sliced bandages to reveal a wad of carefully packed bandages the size of a tea saucer. The skin around the wound was still inflamed, but no longer grossly purple. He began to peel away the lint bandage, and with that packing now revealed the pink, rugated puckering of the inner lining of the stomach, blooming through the wound like some large rows. Alexis coughed, and the bloom expanded, glistening and covered with lymphid fluid, uniformly spreading over the whole surface and trickling to the edges of the wound. Beaumont gazed upon this display for some moments, then applied three fingers of gentle pressure to the center of the bloom, and it slowly depressed into the blackness of the space that was Alexis' stomach, an amazing sight each time you witnessed it. Beaumont folded a clean lint bandage into a square, soaked this with muriatic acid, and began to wipe the edges of the wound, and the track where Alexis once had a fifth rib. In time, Beaumont thought, all in time, this wound will close, and I will have a case worthy of the medical reporter. Alexis coughed again, a bit of meat chewed, but unmistakably meat popped out from the aperture and onto the bandages, and a slow trickle of gastric juice flowed out from the lower margin of the wound. Beaumont picked up the meat and inspected it. He instructed Alexis, he had instructed Alexis to keep an empty stomach to prevent just such soiling of the wound during morning dressing changes. Now he held in his hand the evidence that Alexis had stolen a meal some time in the early morning hours. Beaumont had seen food in just this state before. There was nothing unique about this morning and this piece of meat. As he held the partly digested piece between his thumb and forefinger and gazed at the wound, two facts came together as one for him. He felt as he had the morning some 10 years passed when he first stepped into his assigned hospital tent at the camp in Platsburg, New York. Or when taking calls as an apprentice to Dr. Chandler, it was the same scents in his guts and rush of blood to his head as when he was a boy jumping from the bar and rafters into a hay pile. For weeks he'd observed that the hole into Alexis' stomach gave off no odor or other evidence of future faction. Perhaps the cavity he thought did not work as it he had been taught, like a barrel to churn and ferment food, but in some other and it seemed more elegant manner. The stomach was perhaps not as he had and many of his colleagues had thought it to be some grinding bag or fermenting vat. It was some manner of chemistry perhaps, like an alchemist trick that made flesh disappear. On this morning, an idea kindled not reasons ordered plans, but desire laid to make the taker mad. Alexis was his patient, of course, but he could be something else too. Beaumont could not conjure the proper word but whatever the word on this morning he realized that this man, this wound, was his window to discovery. Wondrous discoveries, discoveries of the secrets of digestion and diet that would rival the work of the famous Parisian physicians. There wasn't another proper doctor within hundreds of miles, a situation conducive, not only to a steady and good income but now also the discovery of this treasure. It was his and it was simply waiting to be explored and written into a book. It was like the vast western lands that President Jefferson purchased and Captain Lewis and Clark charted and from which the American fur company extracted profits. The unknown was waiting to be known and once known rewards would follow, promotion to surgeons secured, election to medical societies. He would erase the humility of his medical training as an apprentice and the condescension of the medical college graduates. His reputation would be solid and preserved for posthumous time. He shook his head like a drinker and who'd swallowed more than his fill. I'm a doctor, not a scientist, he thought. This was work he had no sense of how to do, of where to begin or how to finish before the wound fully healed and sealed its secrets or how he would convince his wife, Debra, of the worth of the sacrifice of time and money and if it was ever done, whatever it really was, he had no idea how to sell it. The idea was swallowed bait, a folly even. God damn. Alexis grew concerned. What is it? Is there a problem? A type of what you call what you call pains? His smile had vanished. Beaumont tried to calm his patient. He began to quickly wrap the bandages into a wad. Nothing's wrong, Alexis. Nothing at all. You're doing well, truly, all is well. He reached out and embraced Alexis. He smiled as best he could. You are the very model of recovery. Alexis wrinkled his eyebrows, then relaxed and returned as doctors' smile like a moon reflecting the light of its sun but ignorant of the nature of the fire that kindled that illuminating light. He spoke an unusually clear English. No, my Dr. Beaumont. I am your miracle. Well, his miracle would subject himself to hundreds of experiments at the hands of William Beaumont. Repetitive, ultimately, and redundant experiments. And ultimately, Beaumont would write these up as a book called Experiments and Observations of the Gastric Juice and the Physiology of Digestion, a truly winner of a title that the publishers would definitely mark it. At the time that Beaumont practiced medicine and pursued his amateur science, the theories of digestion included that it could be a grinding vat or a fermenting bag. And there was a little bit of hints that maybe it was chemical. And we do give Beaumont credit for discovering and sealing up the science that it's a digestion, how to have a substantial chemical process. Beaumont himself, lacking any training in chemistry and unable to collaborate with anyone because he was fearful of losing his claim to fame and money, was never able to collaborate with a proper chemist to discover that he tried and it always ended in sort of a bad collaborative relationship. But there's no question that Beaumont would, he got kind of obsessional and he would put, he would chronicle all the various foods he would put into Alexis' stomach. Oysters cooked, baked, and raw. And then he would time how long it took to cook oysters cooked, baked, and raw and write that time down. He would put the oysters in a vial of juice under Alexis' arm to reproduce the heat, the caloric qualities of digestion, time that. Of course, he never gave you the weights of any of those things so the whole time to digest issue was sort of not worth the data because he didn't tell you how much it weighed, so you know how much oysters take how long. It was some of those mistakes that even at the time many critics picked up on that this hardworking clinician kind of overstepped his reach, but this hardworking clinician was determined to become a famous physician, well-paid for his book and well-rewarded for it. Open wound is about transformations. From patient to subject to employee to object. From physician to scientist to entrepreneur. It's about how people succeed in making these transformations and also how they fail. At the time that Beaumont lived, the US was just exiting a very rough adolescence. By sheer luck, we managed to get out of the War of 1812 without losing to the British and so we had a sort of a country now that was ours to work on and Europe had no interest in us anymore. They were exhausted by the Napoleonic Wars. Slavery was legal. America was engaged in a relentless westward expansion and was doing so by destroying the native American. We would break treaties even before we could make the treaties and we were destroying the native land of Buffalo and Antelope and other creatures. Open wound, I know therefore, seems like it's set in a time long past. It's sort of the frontier, crazy times, more frontier than settled land, category of who you were could determine what you got in life. If you were a pauper or a slave or a woman, there were various things you just couldn't do. Couldn't vote, couldn't own property, you could be sold. And yet I think that the story of this very ambitious, hardworking guy from Humble Roots, Dr. William Beaumont and his relentless and untiring pluck is really a story of a most modern man. He really wanted to be somebody. Who was William Beaumont? Let's read you this. William Beaumont was a boy. No more than five. An uncle rode in from somewhere out west on a roan horse, outfitted with saddlebags that bore that man's initials hammered in gold. He carried a brace of flintlock pistols whose barrels were etched with mythical sea creatures, their smoky burls of high polished walnut. On the pinky of his right hand, he wore a golden ring set with a green emerald the size of that nail, of the nail of that same digit. And he was dressed in a soft coat that matched that stone. He sat before the fire, steeped in drink, pipe smoke swirling around his head and told his wide-eyed nephews of their ancestor, William Beaumont, who was named Earl of Warwick by William the Conqueror. There would have been land to go with such a tidal lads, land and indentured servants, but centuries later, we descendants, you and me lads, are scattered hither and yon, toiling fellow earth, searching for our fortune. He pointed at each of the boys with their amber stem of his pipe. He licked his dry lips. By the mourn, his father, rich in pride but poor in land and cash, called his brother a fob and a fool and ordered him never to cross his threshold. This brother's name was never again uttered and in time it was forgotten. He told his son William that he was no namesake to any kith or kin, that there's nothing to a name but words. A name's just a name, son, not some titular conveyance of talent or wealth and position. Our lives are as free men in a free nation of democratic laws that rewards industry and virtue. Each man has to make it on his own, make his own name in this republic. Each man has to begin the world anew. Who was William Beaumont? He was a common American man, determined to do something extraordinary and to be rewarded from it. So in these times now, when Jim Wilson, my colleague, myself and my other colleagues in medical research live, our frontier's a bit of a different frontier. It's the bios, the commodification of everyday life, genes, proteins and other biomarkers of disease. Scientists like myself and my colleagues do not simply discover new knowledge but we can actually own it if we wish and our institutions encourage us to do this. Patences, licenses, trade secrets are part of the discovery and translation of scientific knowledge. The academic industrial complex pursues scientific research as a means to generate capital. Plans for the dissemination of grant results include how you're gonna commodify or monetize those results. The template CV at my institution includes a line for peer reviewed papers, chapters, invited talks and also patents. I can put my patents if I had them on my CV as part of my research work. Several major universities reward annually a select group of faculty who have achieved research excellence, major university and the criteria for this award of research excellence is bringing in a million dollars or more of direct costs in grant funding. Research excellence. Did William Bowman have a fault? As I was researching him, going to the archives reading the books about him, I came across a line in one of his notebooks where he condemned novel reading as love stick trash and those who read novels as enjoying, seeking enjoyment beneath the level of a rational being which guarantees that if you were alive today you wouldn't read my book. And the context around his comment is very understandable. Novels were a very recent art form at around the late 17, early 1800s and like most new forms of art tend to be viewed as transgressive and disruptive of the social and moral order. And so books that were very popular at the time included Samuel Richardson's book, Pamela or Virtue Rewarded. And it was one of the bestsellers of the age and it depicted a character as ordinary as Pamela Andrews, a servant girl who struggled to establish a fair and just relationship with her master who was lusting after her. The idea of Virtue Rewarded at that time, did I say to you, man, he wanted to screw her and she wasn't gonna let him screw her and that's what the book's about. And to be sure it's a title and a book that has the softest of soft porn as it's theme but yet I think also it has a more nobling point as well which is the empathy that one feels for a servant girl in an era when servants could be owned like property under an indenture or even as a slave. And I think that's what books do. That she's no longer the other but she's a person just like you and me. So, and so too was William Beaumont in some sense. William Beaumont was a person who told his wife, Deborah. Deborah, I know life here on Mackinac Island is difficult. I know that, it is for me as well and that's precisely why we need to help Alexis. My career has always been only halfway to what I want, to what I deserve. When I first enlisted in the army during the war it was to be as a surgeon or even as an assistant surgeon but they made me a mere surgeon's mate. When the fighting ended I deserved promotion to assistant surgeon and yet despite all my labors and successes they would only offer me the same commission as a mate. At the Battle of York I operated side by side with the surgeons just as one of them. When other doctors fled the army I remained even in the winter along the Niagara frontier. I have a letter signed by General Macom and 17 other officers that testifies to my bravery but eight years later after hard work in private practice when I sought to re-enlist in the army they would not grant me the commission as a surgeon but only as an assistant surgeon. And do you know why I have suffered these repeated indignities upon my talent and my character? She shook her head slowly, no. Because I, a New England farmer's son who sit out in this world with no more than my wits and my ambition I was trained not in a medical college but as an apprentice bound by an indenture much like these voyagers who gather beaver pelts for Ramsay Crooks. That has vexed my career since the days the Third Medical Society of Vermont granted me a license. That training has been my blessing and it has been my curse. But here with this case with Alexis I finally have something to show and to show definitively my talents as a surgeon and a physician. I saved his life, I nurtured him to health and now I can close the wound. I will have managed entirely on my own as an unprecedented case when Dr. Lowell reads this account of the wound he will surely see the rightness of my promotion and when colleagues read the case they will surely grant me the recognition due to me now and forever. The circumstances of my training will be of no consideration in the judgment of my character and the merit of my skill. This is America, not Samaristocracy a man's judge for what he's achieved not from whence he came. He stopped speaking abruptly a sob welled within his chest. Deborah stared at her husband. I had never known of this William. Beaumont composed himself. I know, I always thought I shouldn't burden you with something I felt unable to change because until now, until now because now I can change it. I know what Jim Wilson says, what he means when he says we would be fooling ourselves if helping patients was the only force that motivated us. I applaud his honesty, I truly do. I mean I think of William Beaumont as the guy who like went to the state school because he couldn't have the money to go to the good school. Who maybe even had to do his medical school overseas, whatever, and yet he really wanted to make it. And he did, and I suppose I have to give if I had to give myself and my other ambitious colleagues one bit of advice, it would be this it would be to read a few novels or at least near novels such as Good Biographies or novels based on a true story. Stories about people who you study stories about the lives that are your source of fame and profit and also stories of you and your all too human ways. Thank you, that's my remarks and book. Jason, first for writing Open Wound and second for giving me the opportunity to comment on it. We don't have a lot of time in 10 minutes to say anything. So I'm gonna basically make three points. I'm gonna talk about the novel as a method for doing bioethics. Open Wound as a novel and then some of the ethical issues that I think are raised in the novel. So first about the novel as method for doing bioethics. Well, the first thing to say about it is that it is novel. Not a lot of folks are doing that particularly in the 21st century. I guess it places it within the broader realm of what people have begun to call narrative ethics. The insistence which is true that ethics is not simply about principles but about character, effects, motive, intention, moral psychology and it's ironic but fiction is often the best way of actually getting to understand some of those aspects of ethics. Not abstract but real people and real situations are what ethics is ultimately about. And even the thickest kind of legal description or case description you get in a bioethics textbook won't do that. The question I guess is whether the exploration of character is only done through a story. I would take it as one way, a good way but not the only way and that the way I would look at it is that something like a novel helps us particularly if it's in dialogue with something like virtue ethics which is also exploring some of these issues or philosophical moral psychology which is also exploring some of these issues. But it's very helpful that way in putting flesh and blood on these principles. Second about open wound as a novel. Well, it's actually a highly readable novel and I think it's plausible if you read it particularly as I do as a physician and it's actually written in short chapters for physicians with limited attention spans which is very good. So I read a lot of it precepting in clinic actually between cases, you could do a chapter. It's, he's not the first person to use a novel this way to talk about the ambitions of physicians and scientists. And it's no dishonor to Dr. Carlawish that he's got a sort of match, people like Goethe's Dr. Faustus, Shelley's Dr. Frankenstein, Hawthorne of the birthmark. So that's the, there are precedents for this. But I hope, but it's very good and I hope Dr. Carlawish is flattered to have his name even mentioned in that kind of company. And there are also I think some delightful touches if you get a chance to read it. Things that could only be written by a physician writing a novel. And here's one that really struck me is if you're a clinician, particularly an internist, this is one quote. Her legs, and he's talking about Beaumont examining his pregnant wife who's got edema. Quote, her legs had swollen so that Beaumont could pit his thumb into the soft white flesh about her ankles as if it were dough. You're a clinician, you know that feeling. And almost nobody else in the world does, actually. So that's nice. Sometimes, however, doing it as a novel as telling a story like this is also a little bit frustrating. I'm a physician, I want the facts. I want the historical facts. And while it's based on a true story, I'm always frustrated. What's the true story here historically and what's the novel part? Maybe like Dr. Beaumont, I have my own tendencies to think of it as lovesick trash and want the facts. But I think maybe as Dr. Carlawish said, maybe that's part of his aim is to make us as clinicians who are so intensely interested in the facts read a couple of lovesick novels for our own good. And then third, just about some of the ethical issues that are raised within the novel. And I think there are actually many of them. And you can probably use something like this for teaching in the same way that I think Leon Cass and the president's counsel in their book, Being Human, was a compilation of stories and myths that can help to be a springboard for teaching about various ethical issues. So here are some of the ones that I think I found just jotting them down came through the novel. There's first the ethics of altruism and professional duty, how much risk we're willing to take for our patients in order to help them. Beaumont has to disobey his superiors in order to treat Alexis Saint-Montagne. Second, in particular, in that section of the novel, there are questions about divided loyalties because Dr. Beaumont is a military physician, so he's actually disobeying his superiors in the military rank when he's treating his patient. And there's also a little section in which he's giving testimony against a soldier who's accused of malingering, a very interesting divided loyalty issue for military physicians. A third issue is treatment of the undocumented. Saint-Montagne was a foreigner. He was a French-Canadian trapper and there were questions raised about whether it was permissible for Dr. Beaumont to treat him. Questions raised that become very much part of the conference thus far about the costs of care, who was going to pay for the treatment of Alexis Saint-Montagne, what were the limits of charity within the community in which he lived. Next, fifth, very much part of the novel, I think, is this question of the moral psychology of medical research. How much is about helping humankind? How much is about pure, disinterested intellectual curiosity, whether or not it helps anybody? How much of it is about the lure of prestige? How much of it is about financial gain? Our motives, I think, as Dr. Carlawish suggested, are often mixed, but what's the right balance of those if we are human beings struggling with these that will be best for us as human beings, best for patients, best for human progress? Sixth, some questions about informed consent for research. There's this wonderful contract that actually Saint-Montagne has to sign with evidence of mixed motives on the part of the investigator, and of course the appeal is to the common good when Alexis Saint-Montagne signs his contract. And then last, an issue about paying subjects for research, there's, while Saint-Montagne was, in fact, initially an indentured servant, he almost becomes an indentured servant of Beaumont during this research, and questions are raised about exploitation of research subjects and the role of payment in doing that as well. Now, the last issue is a bigger social one that I think Dr. Carlawish also alluded to, and he has Vice President Martin Van Buren say this on page 210, quote, progress in science as in commerce is essential to the success of our great American experiment. Unquote. I take it that Dr. Carlawish thinks it is a true description of the American ethos. Is it true? How much does it affect us in the various university medical centers where we work? And if it is true, what are we to make of it morally? Well, a good novel brings us to think about such questions. Thank you. It's a real pleasure to have the chance to comment on this book, which I found absolutely fascinating. And I'm especially intrigued as Dan was by the question that hangs over it of what kind of knowledge can come from a work of historical fiction. So the story introduces us to an army doctor on Mackinac Island called to help the victim of a shooting accident. And at first, their relationship is straightforwardly clinical with Beaumont struggling to keep his patient safe and alive. And then Sam Martin improves, but the fistula remains open and Beaumont sees this as an extraordinary opportunity for discovery. The very category of research subject doesn't yet exist. And part of the point I take it is that we can step into the shoes of someone grappling with research ethics questions before those questions have ever been formally articulated. Beaumont was trained by apprenticeship, the norm at this time, though not the course of the elite who would take European tours and learn anatomy by dissection in the great Paris hospitals. There weren't very many American medical schools. In Vermont, the first was founded in 1822, some time after Beaumont left, and University of Michigan founded its medical school in 1850. So this story is not Sinclair Lewis's Aerosmith or A.J. Cronin's The Citadel, novels that famously deal with ethical ambiguities of medical research careers a century later. By then, medicine was science and heavily institutionalized. In these stories, each ethical solution, redemption of a sort, amounts to an individualist departure from an institution. Lewis's Martin Aerosmith retreats to his personal lab in the Vermont woods. Cronin's Andrew Manson retreats to his personal clinic in a provincial town. In early 19th century America, ethical solutions were less one-dimensional. And of course, as you've heard, Beaumont's story is not one of redemption. Rural doctors worked in relative isolation and had little sources of professional support or solidarity, though it is clear that they longed for them. In 1823, the year after Beaumont met San Martell, the Lancet coined the term general practitioner and urged that medicine recognize the value of non-specialists. The next decade, the BMA and then later the AMA were founded, but not by the medical elite in urban centers, but by ordinary workday doctors in the country. In the novel, Beaumont hopes that discovery will be his ticket into the world of elite medical society and the recognition that he couldn't get any other way. Prevailing attitudes about medical knowledge making were on his side. Doctors then subscribed to the idea of rational medicine in which intelligent doctors could trust their own common sense and their own observations to learn from their patients and treat them. And in the experimental sciences, the contribution of some individual significant observation had long been a way to get fellowship in a core group. But in medicine, this thinking had to do with clinical treatment. There didn't yet exist a convention for turning a patient into, well, into something that Beaumont telling Lee has no name for even as he's coming up with the idea. He struggles to define his changing relationship with San Martell, characterizing it variously as master and servant, victor and prize, owner and owned, inventor and machine. When I began reading, I assumed that the tragic obsession in the title was going to be an intellectual one, a monomaniacal need to unlock the secrets of digestion. But the obsession, of course, as you've realized, is with success. Discovery is only a means to an end. In the language of the 19th century, there were those who worked with their heads and others who worked with their hands. Within the professions, there were strata too, and Beaumont wanted to move from a world of mere practice, the hand workers of medicine, to the select world of the discoverers. Now to the broader question on my mind, the tension between the kinds of truths that can be had from fictional exploration and from historical analysis. I'm a historian, I might even be the only historian in the room, and it's in my interest, therefore, to be a bit skeptical of the idea that history only gives us facts, whereas fiction delivers the truth. But it is an appropriate gesture for a book that is clearly searching for a way imaginatively to get at a truth about a life whose documentary remains are fragmentary and a truth that would probably be elusive even if we had a really good paper trail. I think that a remark that Dr. Carlawish makes a little later in his author's note that if there's to be justice in the world, it will be done by people who see the power that fiction gives to empathy really evokes what the book is trying to accomplish, namely to get readers to experience this power. It's a twist on a familiar argument that fiction allows readers vicariously to experience an actor's intention and challenges. One might say fiction makes it possible to reflect more holistically, like Dan was saying, to get at a more encompassing truth. But if so, there are some costs. Fiction is an indirect way to make an argument because the very wholism makes the argument less clear. Should we conclude that Beaumont's professional ambitions trumped his clinical duties? Should we be reflecting on the ethical issues presented by a passive experiment, one that just presented itself to Beaumont? Or is this a case study in the archeology of the research subject? I suspect it's all of these and there may be value in this ambiguity because medical ethics cases come with so many overlapping issues. So when you put flash on the bones, as it were, of a case in the way that you don't get when you have a two-page story, there's more of an opportunity to reflect on these multifaceted issues. If part of the goal is historical to explore decision-making at the dawn of medical modernity, then there are similar costs. Does one try to evoke the differences in how people express themselves? Or do you minimize those differences to help the reader greater identify with the characters? Carlowish, I think, tends to emphasize differences in context and practice and emphasize similarities in motivations and value categories. So for instance, when Beaumont wants Sam Martin to remain with him as he's recovering after he's recovered a bit, a preacher objects that there are appropriate limits to beneficence. This term has an ancient pedigree meaning a kindly act in general, but I bet that most of you have used it if you've ever used it in the specific context of medical ethics issues. The idea that a physician might be guided by beneficence when trying to act in the best interest of his patient, even if this might be done without consultation or overriding the patient's wishes. Medical readers will think of this context, this ethics context, when they read the term on page 57, if you've got the book, particularly because the issue hangs over the whole story of the relationship between Beaumont and Sam Martin. Maybe this tiny example helps tease apart the difference in the truths that one can get from history and fiction. Dr. Carlawish writes that Beaumont is a modern man in his ambitions to leverage discovery, to move up in the world, that he's like the contemporary researchers that he talked about in his presentation. But I wonder if there's more to it than that. Otherwise, why write about a figure from the past or from this particular period if what we learn about it is that in a world where discovery can benefit you, people are going to be ambitious? Is this a special moment when ambition can be realized as never before? This doesn't tally with the grain of the story partly because Beaumont is not really good at it and partly because people have been finding treasures in special qualities of other people and lugging them around the people for centuries. In this sense, the moral of the story is timeless. But I think another answer is that this is supposed to encourage doctors to reflect on behaving wisely and not indulging tragic obsessions, not deceiving themselves about acting according to beneficence when sometimes they're just being self-serving. If so, the value of choosing a case from this specific period when the institutions of modern medical research and practice were just taking shape is that it casts a different kind of ethical light from Aerosmith or the Citadel or their many modern successors. In those novels, the ethics of the relationship between practitioner and institution are center stage. In the 1820s, the ethics of the relationship between practitioner and an emerging category of subject are to the fore because the institutions of research were not yet stable. And the point is that those ethical questions didn't go away historically when the institutions of modern medicine solidified even though they became less conventionally visible. That's one reason that I think it really valuable to look at historical episodes like this one maybe even particularly this one and perhaps to do so through fiction. We journey into the past to get a different perspective on the present. We're gonna take about three or four minutes for a couple of questions. I thought Jason's introduction to the book and the two commentaries were spectacular. I hope that we made available to you because I thought they were deeply insightful. Good, questions. I mean, when the president is sort of rebuking Beaumont, you have him saying, and I just wanted to see if this is true, he cites a Samaritans case to say, assistant surgeon Beaumont is to be especially singled out for making an experiment upon his patient of more than doubtful propriety in the relations of a medical advisor to his patient. That was him's about what he'd done to Griswold, not to assembly. Oh, that was, I got it, okay. But yeah, that's lifted from, that's... But that is true, that's true. Lifted from the archives, yeah. A lot of the letters I just transcribed, the opening preface of the book is a letter that Beaumont wrote to Alexis, begging him to come to him later long after Alexis fled him. And I just transcribed that letter. It's this sort of love letter almost that he wrote. It's really kinky, actually. Ryan Nash from UAB. Thank you all for three excellent presentations. I look forward to reading the book, I haven't read it, but look forward to it. A comment that you made, Jason, in your presentation just made me curious. So this is just a curiosity question. One of the seeming critiques of Beaumont was that this ambition of having a successful book and moving up to a new level of, to the new level of medical elite, possibly led him to overstep his bounds and take advantage of his subject. I wonder, assuming that you're not opposed to making money or being, having prestige from your book, if this parallelism between you and Beaumont Oh, dear. informed the respect that you gave your subject. Yeah, no, if you don't think I see the irony between what I'm doing and what that guy did. But your patient's already dead. Yeah, he's dead. And actually, I tried to find it but I agree with you. I agree with you. And it did humble me. Trust me. This is, it's been a very interesting process of sort of using his story to make a story that I want you all to read. You know, and I agree with you. I completely agree. And I think the fact, I just, I think I'm glad I at least feel that. I really am. I did see if there were any Beaumonts alive that I could trace to the family because I thought, God, could I get sued? And as far as I can tell, they were rags to riches because they became very wealthy in St. Louis. He earned a lot of money as a celebrity physician to rags family. They definitely sort of faded from existence. By contrast, the Griswold family is still alive and well in Connecticut. Oh yeah, yeah, yeah. That's right, yeah. He did come from a famous Connecticut family, Lieutenant Griswold. I traced him down. Well, if there are no more questions, I urge you to look at the book. There are some I think that we may still have on sale out front. Let's try to gather. I know we won't quite make it at 1.30. Follow the crowd to the Green Lounge where box lunches will be available of many different sorts. And again, remember to come to the party tonight. All right?