Maternal and Child Health Leadership Conference (Chicago: April 27-29, 2003)

Joan Kennelly: Thanks, Arden, and I guess I’m the fourth one to welcome everyone, so welcome. It is indeed my pleasure today to introduce our keynote session as well as our speakers. Oh, I guess one detail before I forget: a coat has been abandoned in the Steppenwolf B, whoever attended the “Methods for Evaluating Research Articles,” and the coat is outside at the desk in the hallway. So if the person's not here but you know of somebody who did, that’s where the coat is. Okay. Well, building on the theme, as Arden said, of translating research into public health practice, our keynote session has been organized today to foster a discussion around some of the key determinants of health, such as scientific knowledge, the way a society is structured, technological capacity, and the relationship of those factors on the development of public health strategies for eliminating health disparities. The keynote is titled, “Human Variation, Health Disparities, and Race: What We Know, and What We Do Not Know.” We’re really honored to have two very accomplished and creative public health leaders with us today: Dr. Barbara Ferrer and Dr. Richard Cooper. I’ll let you know that I’m going to introduce both of them at this time. They will each speak for about 30 minutes. We’d like you to hold your questions and comments until the end so that we can have a dialogue and have discussion with both of the speakers. As Arden said, this is webcast, so when we get to the question period, please come to the center and use the microphone, and then we will also repeat the question from up front here. I will begin with introducing our guest from the state of Massachusetts and the city of Boston, Dr. Barbara Ferrer. Dr. Ferrer was born in Puerto Rico. She graduated from the University of California, Santa Cruz with a degree in Community Studies. She then went on and received her MPH from Boston University, and her PhD from Brandeis, where she was a *Pew Doctoral Fellow in Health Policy. Dr. Ferrer has served and advocated for women, families, and communities, particularly the Latino community and other vulnerable groups, for over 25 years. Notably, she was the founder of the Massachusetts Coalition for the Homeless. While Barbara’s community projects are really too numerous to mention here today, I will tell you that she currently serves on the Community Advisory Board for Harvard’s Prevention Research Center, and she is also on the board of the Massachusetts Public Health Association. Barbara’s leadership has been recognized with such awards as Humanist of the Year by the Ethical Society of Boston, the Governor’s Citation for Outstanding Advocacy, and the*Margaret E.*Rich Memorial for Distinguished Leadership from the Family Service Association of America. Dr. Ferrer’s professional experience also demonstrates her long-standing commitment to community, health in its broadest sense, and prevention. At the Institute for Health Policy at Brandeis, as a senior research associate, she was involved in establishing a consumer health policy center, as well as developing initiatives for examining the health status of women of color. From Brandeis, Barbara joined the Massachusetts Department of Public Health and became the Director of Health Promotion and Chronic Disease Prevention. Increasing her focus on women and children, Dr. Ferrer then went to serve as Director for Maternal and Child Health and Family Health at the Massachusetts Department of Health from ’95 to ’98. Since 1998, Dr. Ferrer has held the position of Deputy Director for the Boston Public Health Commission, where along with the Executive Director, she is responsible for public health programming to ensure that the Commission is responsive to the health needs of the residents of Boston. Barbara also wears an academic hat as an adjunct professor at Boston University’s School of Social Work. Welcome, Dr. Ferrer. Dr. Ferrer’s co-presenter is Dr. Richard Cooper. Dr. Cooper was born and raised in Little Rock, Arkansas. He was in junior high school, actually, at the time of the school integration/segregation crisis, depending on your point of view, and thus became sensitized at an early age to the social contradictions involving race. These contradictions actually influenced both his personal and professional development over the years. After graduating from the University of Pennsylvania with a degree in English, Dr. Cooper received his medical degree from the University of Arkansas’ Medical School in Little Rock. During his medical training, Richard was struck by the lack of health care for a large segment of Little Rock’s population, the black community. As a medical student, he organized and established a free clinic in Little Rock’s east end, and he was very creative in getting fellow students as well as faculty to donate their time, including, actually, our past Surgeon General, Joycelyn Elders, who was a Pediatric Faculty at the medical school at the time. Interestingly, I’ll tell you that I was recently in Little Rock visiting the new University of Arkansas’ School of Public Health, and it was very obvious to me that Dr. Cooper is still remembered at the medical school as the founder of the free clinic. The clinic remains in the same location, but has since been expanded and has actually been transformed into a federally qualified health center. From medical school, Richard went on to complete his medical training in social and internal medicine, as well as a fellowship in noninvasive cardiology at Montefiore Hospital in the Bronx. He moved to Chicago to complete another fellowship in preventive medicine and epidemiology, and to work with Dr. Jeremiah Stamler at Northwestern University. After his fellowship at Northwestern, he became Assistant Chair of Cardiology and Head of Clinical Epidemiology at Cook County Hospital, as well as faculty UIC Medical School. Since 1990, Richard has been chair of Preventive Medicine and Epidemiology at Loyola University’s medical school. His English degree seems to have served him well, as was evidenced in looking at the C.V. of more than 300 peer-reviewed publications, and he recently has been promoting dialogue on race, genetics, and public health with invited commentary from the “New England Journal of Medicine,” as well as “The International Journal of Epidemiology.” Dr. Cooper has received numerous awards in his professional career, most notable that of a merit award from the National Institutes of Health for his outstanding accomplishments and leadership. His research interests mainly involve hypertension and the evolution of the cardiovascular disease epidemic among populations of the African Diaspora. Welcome, Dr. Cooper. Without further ado, why don’t we begin the dialogue, and I’ll just move this back because he’s going to control his own slides.

Dr. Richard Cooper: Thank you very much. I appreciate the opportunity to be here at this important conference, and I’ll try to make this a useful half-hour for you. I’m going to talk about some of the ideas that we use to think about the problem of race, and my premise, as you may have guessed, is that some of it is misguided and much of it is simply wrong, and that all of us in the health field need to struggle to think through for ourselves a better way to approach how we set a framework and how we think about this. There’s no off-the-shelf method, if you were; there’s no prepared answer in the culture around us that I think really is adequate, and I want to use examples from public health to try to explore that. Well, of course we’re starting from this issue of health statistics and we now have data in this country on at least four, and sometimes five, racial or ethnic groups, and the striking thing is the consistency of the excess mortality risk or disease risk in the Black population, which is not to say that other groups don’t have specific and significant problems, say diabetes and so on. However, if you look over this as a whole, what is striking is that excess for Black Americans. I did it this way just to give you an idea of putting it in a single graph. The blue line there is infant mortality, which is on the axis on the right side, and you can see clearly that excess is concentrated for a whole variety of conditions. So it’s from this background that we ask the question, “To what extent are genetic factors likely to shape this pattern?” So these are a whole series of diseases, which, in terms of their causal process and their pathophysiology, are often quite different. Of course, the first question you would ask if you looked at those data is, “How likely is it that there’s a pattern of genetic factors that causes this?” Now, when you look at a little more detail in data, which I’m sure most of the people know more about than I do, this is simply infant mortality. Here, we have data on American Indians, who are somewhere in between, and the Asian infant mortality, of course, is lower than that of Whites, and for low birth weight, again, it mirrors the same thing, and here we have the data for Hispanics, which has been consistently quite similar to that of Whites. For other things that have to do with health of developing children, like lead poisoning, of course, we have the same substantial disadvantage for the African American population. Well, let’s think a little bit about how we approach the problem. Now, these are some data which are from a classic study in hypertension. These were people who were screened to take part in one of the original trials on the effectiveness of treating high blood pressure, and in the data people began to look at the combination of what is called social class or socioeconomic status and risk of the disease. So what you see, of course, is a consistent pattern of lower prevalence rates of hypertension in people of higher education, and that gradient is similar among Blacks and Whites. These data, as I’ll show you, are reproduced for a whole variety of conditions. But at each category, you see a large difference, right? That’s the framework that people have used to approach the analysis of what might be the causal process that lies behind here. So this is from a recent paper in "Jama," and they use the NHANES III data, looking at cardiovascular outcomes, again, and they compared Mexican-American, White, and Black women in this case, and they did this process of controlling for education, just using a simple statistical technique. Then they looked at how much was left over after you controlled for the difference in average education in the groups, and they found that there was still a substantial difference in disease risk after you control for education. So this was an interpretation given to it that appeared in the "JAMA" a couple of weeks after that, which I used because it is a nice, sort of standard reproduction of the way people think about it. So as you can see on the bottom paragraph, even after adjusting for years of education, there were indications that race itself played a role, which led the researchers, in this case, to infer that genetics might play a role. The original article was pretty light on the issue of genetic interpretation, but they did leave that open. As usual in a lot of this literature, people say, “It could be this, could be that,” and play the game down the middle of the road. So let me use a couple slides here to try to give you some sort of a logical approach to how this works. Well, we know on the bottom axis that there are differences in power, wealth, and privilege that have to do with SES, and we know that there are different distributions of those between the Black and the White population. Then that line that slants that says, “SES versus the death rate” looks at the relationship between those social factors and disease risk. Then, if we summarize the average relationship for each of the groups, and then adjust it and use it to measure the aggregate outcome, you see this death rate on the right-hand side for Blacks and Whites. Of course, you could use that for low birth weight, infant mortality, any outcome that you would like. So the idea in this analysis is simply to set the X-axis the same: to simply slide it over, as if you had two laboratory tests and you adjusted them to a single standard. Once you’ve done that, then your expectation would be that if that were the sole or the total cause of the disparities, then on the Y-axis on the right, things would even out. So that’s the logic that people use when they’re doing this analysis. Of course, what you’ve got is that you don’t actually put those two distributions in the same place when you adjust for education. I think any of us stops and thinks about it a little bit, educational attainment does not have the same purchasing power in different populations; Blacks with a college education make about the same amount of money as Whites with a high school education. So even if you measured in dollar amounts, it’s not very similar. You have something left over; you still have a difference, or a gap, in the rate, which that previous slide commented on. So the question becomes, “What inferences can you make about the gap that’s left over?” I call this the subtraction method. So you’re subtracting off what you think is the environmental effect. You have something left over, and now you want to make an inference about that. Well, if you stop and think about it for a while, since you can’t really adjust for the social dimension, you have no basis, whatsoever, for making an inference about the content of what’s left over. We know that there are many, many social experiences in life that are different for people who are immigrants, who speak a different language, or who are Black in this country, other than just education. There’s a whole panoply of things that happen to people, in terms of the neighborhood they live in and so on. So you really have no logical basis, whatsoever, for inferring that what’s left over might be genetic or might not be genetic, and it’s strange to me that this method has been embraced as a useful tool, and is, in fact, the most common, standard way in which people do this analysis. It is completely without a logical basis. So if there’s anything that you remember that I talk about, the next time you see somebody make a conclusion that they adjusted for education and there was something left over and that might be genetic, maybe a little light will go on in your head and say, “There was some guy in Chicago who told me that that was silly and ridiculous and wrong-headed, and simply a way of stating a belief,” and what I would call, “biological determinism,” that race has an important biological effect. This is simply a technical ritual that we use to explain something we already believe ahead of time. That’s what--use analogy of the military news; it’s sort of a contradiction in terms. In other words, we have an explanation about why something happens; we’re just trying to find a way to explain something that actually already happened, and independent of any other reason. So let’s look at these examples here. I apologize; some of this doesn’t show up too well, but I can show you (inaudible). So these are birth weight data, which, somebody pointed out to me, are old, if not ancient, from the state of Georgia. You see if you separate them by education and put Blacks and Whites, you still get this same characteristic pattern. Well, let’s stratify on another measure, which is marital status. So all right, technology is going to kill me yet. So if we put unmarried and married among the blacks, we see the same pattern. Of course, you would see the same thing if you do it for Whites. So there’s clearly something left over. I mean most people would not immediately leap to the inference that marital status is a genetic trait. So there’s what epidemiologists call “residual confounding.” There’s still an effect that has to do with social conditions that hasn’t been captured by the variable that you’re using. Well, let me then move a little bit to another issue related to epidemiology, I think makes the same sort of argument. We’ve all heard that Black Americans are genetically predisposed to hypertension. This has been drilled into the head of almost everybody on the planet, and it’s based on observations that compare Black Americans to White Americans, and assumes that much of the excess must be genetic. Well, a study that I’m involved in is looking at populations from West Africa. This is Nigeria and Cameroon at the bottom, and the Caribbean, Jamaica, St. Lucia, and Barbados, and then in the suburb of Chicago, and you can see that across that range, the risk of hypertension changes dramatically, and it’s perfectly linear with the industrial lifestyle here captured by a proxy of body mass index, which is a measure of obesity. So whatever else you can say, it’s clearly driven by changes in the environmental setting. But what about the racial comparisons? Well, this is from a study that we did that’s coming out in "JAMA" in a couple of weeks, comparing hypertension in the United States and in Europe, and the bottom two lines, which overlap there, this kind of light blue color, are the data from the United States and Canada. Those are the prevalence rates at those ages of hypertension in people who live in the United States and Canada. They’re virtually identical, and all the lines above that are from Europe. The very top line, which is kind of an off yellow, is Germany. So you can see that there’s very marked difference in the prevalence rates of hypertension in North America and in Europe. Here’s what it looks like if you line up these prevalences. The bottom purple lines are Nigeria and Jamaica. That third bar is the U.S. White population. Then it’s Sweden, Italy, England, the U.S. Blacks are the next purple, and then Spain, Finland, and Germany. So you can see Northern and actually Eastern Europe have much higher prevalence rates of hypertension than do Black Americans, a phenomenon which has been totally ignored, but might be very interesting in terms of the causal process for hypertension or what we can do to prevent it, and about which nobody’s made an inferences that relate to genetic causes, as far as I know. Well, these arguments have also, of course, been very prevalent in clinical discussions. So this is one that has to do with heart failure, a paper that was in the “New England Journal” looking at data from one of the drug trials for heart failure, and the bottom line here shows you that the drug was apparently quite effective among Blacks, this is a placebo group, this is the ace inhibitor treated group, was effective among Whites, but not Blacks, and when the endpoint was hospitalization. So this received a lot of press and was interpreted to show that the basis was probably a genetic factor. I keep leaning on this device. I apologize. We get this kind of an inference, that heart failure is a unique malady and that certain genetic polymorphisms might exist to explain this difference. Well, we reanalyze these same data from this same study. Many of the Blacks in the study were recruited from Cook County Hospital by me, so I find it particularly irritating when somebody arrives at this conclusion. These are now public use data sets, that anybody can write to the NIH and get, *fish-in if you will, and you can see that, in terms of Blacks and Whites, the relative risk, if you use progression of heart failure among those who had a bad left ventricle but did not yet have heart failure, is absolutely identical in the Blacks and Whites. The big study just recently finished called AllHat showed the same thing. So all this stuff about Blacks responding differently to ACE inhibitors is Type 1 error that somebody found when they went fishing for a sub-hypothesis. All right. Well, let me finish with one last example, just to hopefully nail this point down a little tighter. This has to do with incarceration in prisons, a social outcome that we’re also interested in because of the racial differences, and this is a statistic which got a certain amount of play showing that the war on drugs, which is really the war on people who use drugs, ended up with a lot of Black men in prison. So from a biological determinants point of view, we could use this paradigm; in other words, we could say that there is certain genetic factors which influence criminal behavior, and that that leads to an increased risk of incarceration. We might infer that those genotypes, if you will, those genetic variants, were more common in one population than another. Well, the alternative is to say that, yes, there are in fact genetic differences between groups, and we know where the genes for incarceration risk are. They’re actually those that code for skin color, because given a certain skin color, then there are social forces which interact with that, and that results in the increased risk of incarceration. But it’s a social response that’s keyed on to things that we call race that in fact lead to that result. So in a sense, of course, the biological and the social are somewhat intertwined. It’s sort of silly to say there are no group differences. But to go to the next step and say those group differences lead to some important common health outcome is where the problem lies. So you could make the same argument if the outcome was any sort of common health condition, which would include low birth weight, infant mortality, and so on. I would suggest that this is probably much more realistic and much more likely to be useful, and much more consistent with what we actually know about the biological data. All right, well, let me change gears now and talk a little bit about what genetics is bringing to our understanding of this. Well, one thing it’s brought to us is a green bunny. This is Alba, the green bunny. It’s an art intervention made by a friend of ours who actually works at the Art Institute here in Chicago. This bunny has appeared in "The New York Times," among other places, but grew up in the South of France, and is expressing a gene from a jellyfish. His point in doing this was that it’s trying to help us think about the world in a different way. So we now have this capacity to move genes around from one organism to another, and the barrier between what’s natural and what is an artifice, what we make ourselves, is now much more indistinct, and it’s trying to show us that it’s still all part of the natural world, that we can somehow naturalize this process and understand it and use it, just like we’ve domesticated animals, done a whole lot of things over our time here on this planet. So that’s one approach to bringing genetics into sort of the everyday life, normalizing it, and naturalizing it. Another approach, to understanding genetics, I would set at the other extreme, is this cult called the Raelians. As some of you probably heard of the Raelians, okay, named after a French racecar driver, named Rael, and their doctrine is that we were cloned from DNA brought down by a spaceship by aliens, and they are the ones who have run this thing called Clonaid, and claim to have cloned several people themselves, showing that if you are part of the sect, you can act like God and create new people. Now, most of that is, of course, pure fantasy, if not all of it. But it’s that approach that DNA came from outer space, rather than DNA being a product of three billion years of evolution and shaped by the environment which we still live in that I would say is the completely opposite extreme, and the question that we need to think about is, “When you think about the introduction of molecular genetics into public health and medicine, which of those extremes are we going to balance on?” Are we going to talk about these sort of fantasy things *of making kids with high IQ, or are we going to talk about practical, important uses that grow out of our understanding of biology that already exists, rather than inventing something from outer space? Well, the challenge, of course, to geneticists now is to try to figure out a way to use these new tools for common health problems. In the past, of course, genetics was restricted to rare conditions, birth defects, and so on, and they realize now that if it’s going to be big science and really have an impact, it has to say something about common illness. Public health has a long history of incorporating technology into its mainstream. There are many examples that we could cite where things have been developed as pure technology, than incorporated in a very practical way and had an important use. That is a challenge now with molecular genetics. These are some of the ways in which molecular genetics could have an impact. Clearly, it could improve prenatal screening, and I’ll give you an example of that. There are claims that gene therapy is feasible and useful for at least a small set of conditions. That hasn’t yet been demonstrated to be effective and safe, but it might be. There is an interest in using it to define susceptibility factors to common disease, and of course, corporations, drug companies are investing enormous amounts of money, hoping this will be a pathway to drug discovery, and then finally, there’s some interest in whether it could explain health differentials. Well, here’s I think one of the clearest examples of how molecular genetics has helped--and you don’t necessarily have to go this far, but this is as a prenatal screening test. So people have a DNA test and find out if they have the gene for beta-thalassaemia, a severe form of anemia that protected people against malaria, and then they make certain decisions about pregnancy and about who they’re going to marry, and so on, and in the Mediterranean countries you can see there’s been a very substantial drop in the rate of birth from thalassaemia, and this has been a very important and useful application. So much more sensitive and powerful diagnostic testing is clearly an important application of molecular genetics. Well, let me turn now to the more general discussion about, “What do we mean by this idea of race,” which is ambiguous, although on the other hand, all of us all sort of assume we know what it means and it has many different dimensions to it. Well, if it means anything, it means that there’s some kind of structure in the genome. By structure, we mean that if you take the distribution of global populations, that one population in comparison to another population has a different set of genes. That’s the hypothesis, and that, of course, has its precedent in nonhuman populations where local or regional populations diverge from others. Well, there are two basic questions, I think, that need to be addressed. First of all, in terms of the population genetics, is it a valid category? I don’t just mean are people different from others in some way, because that is a given; however, the real question is: can we construct a valid, quantifiable, scientific category using population genetics? That’s the first question that (inaudible) still wrestling with. Of course, beyond that, we want to know: does it have any relevance for medicine or public health? When we talk about race, to avoid some of the confusion we have to be very clear that in this context, we’re talking about what people call continental race. This is Black, White, Asian, so on. Now, there are many uses (inaudible) Nordic, Alpine, you can break it down, obviously, on many different scales. But for this particular discussion and, of course, within public health in the United States, by race we mean continental race. All right, because if we can do that, then it may be possible to put it to a variety of uses, including these. Well, much of this discussion was reignited, if you will, or at least heated up by an article by a population geneticist from Stanford, who used some of the new molecular data that’s being published and came to these conclusions. First of all, in the first line, what they’re basically saying is that it is a valid category, in terms of population genetics, saying that molecular genetics has recapitulated or demonstrated that these groups that we’ve called races are in fact categories. They said that genetic differentiation is greatest when we look on a continental basis, that that should be the unit we should be interested in, and that for chronic disease, we know that there are a lot of differences in susceptibility and progression of disease among groups. I disagree with all of those statements, and I’ve done so in print in this article that Joan was talking about. But it’s a good starting point. All right. Well, first, let’s ask the question about whether or not it would be useful as a guide to drug therapy, because that parts back to the Ace example, which says that there are differences in these genetic variants between groups that make them respond differently to drugs. Well, this is one of the important analyses, looking at an enzyme that is in the liver that metabolizes drugs. Now, you can do a simple statistical test on this and show that by race, across those populations at the top--the A, B, C, D--there are significant differences; there are statistically significant differences. However, if somebody walks through your door and happens to be Race D, as compared to Race B, you’re going to have a very hard time telling whether they have one or the other variant. Do you follow me? Because they’re only small differences: 10, 20 percent. So this difference of information is absolutely of no value from a clinical point of view. You think about predictive value of a test, or sensitivity and specificity, how much precision you need before you make a decision for a given individual. This is of no use whatsoever. You have to have one variant that’s in 10 percent or less of the population that’s Race A, and 90 percent or more in Race B to be in any kind of useful range where it helps you make a decision. So there are yet no data which suggests that any enzymes related to drugs that I’m aware of that are common, just perhaps some rare mutation, that allow you to use race as a proxy. Race cannot be a proxy for the genetic variant. If you want to know what the variant is, you have to do the test. So therefore, race doesn’t help you very much. It can help if you want to reduce the number who you screen for some genetic disease. If the disease doesn’t occur in a population, then there’s no point in screening them for it. However, that’s not the issue that’s being discussed (inaudible) drug therapy. All right. So these are the points that I made before on that basis, it’s not helpful at all. So let’s look at this next issue, which is, “Does population genetics create a valid category that we could call race?” The way that’s done is with cluster analysis, the standard methods of cluster analysis. All right. So I’m going to spend a couple of minutes on these pretty little slides here. This is not actually a work of art. This is a paper in science, and what they did was use these population samples from all around the world, so across the bottom axis is the name of the populations. So these were collected by anthropologists who were interested in these isolated or somewhat unusual populations, and we have about 10 to 20 people from each of those groups. They then did 400 of these so-called microsatellite markers, the kind that are used for DNA fingerprinting. Then they ask this computer program to put people in different groups. So they first told the computer, “Put all of these people into one of two groups.” That’s that first line, where it says, “K equals two.” Then they told the computer to put them into three groups, and you can see they go down until they get six groups. All right? So they shuffle the people randomly; in other words, they didn’t label what population they were from. So they want to see whether people who were from China, and this group over here represents mainly people from Asia and China, if they were put in a different group than the people from Europe, who are on the other side. All right? Does everybody follow me? So each little line, which you can’t see, is one individual, and whether that person is blue or yellow is depicting whether they should be in Group A or Group B. All right. So they did this computer exercise to see if it would correctly classify, or recreate, the groups that we call races. So when K equals two, all the people who were yellow are in one group, and I can tell you the very far side over here are Africans, these are Europeans, these people are from India, then it’s China, this is Pacific Islanders, and these are Native Americans. So then, as you walk down to into the second group, you can see the Africans in K3, the Africans become a separate group, all right? And all the people who are blue are the Europeans and people from South Asia, India, and Pakistan. Then, as you walk down to four, you can see that the pink are Asians, Chinese, primarily, and the last are Native Americans, Brazilian Indians. When you come to five, you get a green group, who are the Asian Pacific Islanders, all right? So if you stop at five, guess what? You will end up with the *OMD classification of five groups. You end up with Africans, Europeans, Asians, Pacific Islanders, and Native Americans, and this was a conclusion that led them to say that molecular genetics has recapitulated race. Well, we could spend a lot of time about this particular technical issue. I think it’s important for people to confront the fact that yes, there has been some history of the human population. There has been some ongoing evolution, if you will, some differentiation, and that if you collect enough information, you can tell whether somebody is from China or Sweden. You can also tell that by asking them their last name, but if you get 400 microsatellite markers, you can classify them without asking their last name. Now, the real question is, “Is that a valid picture of the global distribution?” One of the things you notice is that everybody in Europe and India and Pakistan is in the same group. So it may be news to them that they’re in Europe, but, hey, it’s molecular evidence, what you can tell, they speak an Indo-European language. Then in number six, K equals six, the others group here, the one on the border between Afghanistan and Pakistan, they’re a separate race, and you know that could only cause trouble if you told them, but what about K equals seven? In other words, you stop at K equals five, it’s somewhat artificial. If you tell the computer to find five groups, it will find five groups. Does that mean that those are somehow naturally occurring groups? The other problem is that it doesn’t really follow the migratory pattern of people. In other words, the usual assumption is that there’s a gradient, sort of what you see in that first slide here in the middle. I mean the expectation would be this, that there would be this gradient across, that people would not be primarily in one group or the other, and that’s, of course, what you see if you look across the Middle East, that as you go across a geographic area, there tends to be a mixture of populations. So cluster analysis does not really satisfy the question of whether or not there are independent races. What we really want to know is: does it summarize information that has some sort of medical relevance? So there are really two issues here. First of all, when you think about the rare diseases that are caused by a mutation in the single gene, and the other is common illnesses like diabetes, hypertension, low birth weight, that are different between groups. So for the single gene disorders, continental race is not really the category that you’re interested in. Tay-Sachs occurs only in Ashkenazi Jews, and Ashkenazi Jews are not a race, and Ashkenazi-land is not a continent. So there’s no match between that and Europeans. For sickle cell, it involves people in the Middle East, India, all across the malaria zone. For common disease, we don’t really have any idea what the genetic factors area, so we don’t really have any idea whether they’re distributed differently in population groups, but given the worldwide susceptibility to these things, it’s not very likely that they are. Within race, of course, as I pointed out, we see this huge variation within race. It’s actually bigger than you see between races. So that doesn’t support the argument very well. So when you think about it, you can think that if you have the effect of a single gene that’s very large, those tend to be rare. Tay-Sachs is a rare condition. It’s a mutation that is not spread very far, and it’s a fairly recent mutation. However, those that have a small effect and are common, tend to be old, and they tend to be shared. So there are two ways you could think about common disease, which are the ones that are obviously of much more public health importance. Either there are common variants or mutations, or there are many rare variants or mutations, and if you ask, “Well, let’s examine whether or not a common mutation happens to be more frequent in one population than the other.” Well, this is a look at some of the distribution of different segments of the genome, and what it says, simply, is there aren’t very many varieties. In other words, if you take pieces of chromosome, we all tend to share a small number of those pieces. They’re shuffled differently, but we tend to share them, and they’re also shared in different population groups, given our recent ancestral history. So if there are common mutations, they have to be spread in all population groups, perhaps not equally, but to some degree. All right. Well, the last thing, then, is just to look quickly at a picture of a couple of genes. I’ll do this quickly. On the Y-axis are individuals. So each row is a person, right? Each of those little dots is a place across this whole long stretch of DNA where people have something that varies. Otherwise, we’re all the same in between. In the top half of this slide are Black Americans, and the bottom half are White Americans, and you don’t really see a big difference in the pattern there; you can’t really distinguish. However, for this slide, you can begin to see that in the top half, particularly on the left side, there are more red dots. There are more variants and so if this were the more common pattern and those things were important, then you might begin to argue that there’s some differentiation among groups. However, that’s not usually the case. Why is that not the case? Because we all have a recent common evolutionary history, originating in the African population--and let’s suppress that one, that’s good--and there hasn’t been sufficient time for regional differentiation, except for some things for which there have been very strong selective pressure, like malaria, and that’s unique. So for the diseases for which there hasn’t been selective pressure, we’re probably not that different. All right. Then I want to just give you a couple of images. This is sort of a take-away to think about how we incorporate the information from molecular genetics, or genomics, into public health, and I think that images are a very good way of kind of summarizing the information for us to think about. This is what I would consider the standard, up until now, approach. I call it the Jeffersonian genome, which says we’re all created equal, except for the people that do the work down on my farm, and they’re different, and it says that on this axis we have the genome is project straight onto what we observe, the trait, without being filtered through some social or environmental process. So this is sort of the traditional way we thought about genetics, that it makes something directly and that the shift in distribution of what we observe is driven by the difference in the genes. Another way of thinking about it is this diagram of a tree, which allows you to place people in relation to each other, in terms of some sort of historical or migratory pattern. Again, this emphasizes differentiation. This wants to give you the greatest precision on how you place people in relation to others. An alternative would be to think about it in the image of the sun, which is a single entity, it has this fringe around the outside, some differentiation; however, it’s something that’s common and shared and can’t be divided into parts. Thank you very much. For some reason we lost the picture on the screen here. Maybe it’s (inaudible).

Arden Handler: We'll now hear from Dr. Barbara Ferrer.

Dr. Barbara Ferrer: Thank you. Hi. Can everyone hear me? Great. I thought that was excellent, Richard. Thank you so much. I think it’s actually a good segue into what I wanted to talk about today. But before I get started, you know a lot more about me than I know about you at this point, and I thought it would be good for me to know a little bit more about who’s in the room with me. So I just have a couple of questions I wanted to ask, and it also might be a nice opportunity for people to stand up, as you want to answer these. How many folks in the room are working in a health department? If you could stand up, it would actually be easier. Great. How many people are working in hospitals or clinics or health centers? Great. How many folks are in academic institutions or centers? Some of you, I know, you’re going to be standing up more than once. That’s fine. A lot of people, okay. Great. How many folks are in non-health centers, either social service agency or community-based organization that wouldn’t necessarily be delivering health services? Great. Did anybody not stand up at all?

Unidentified Speaker: State.

Dr. Barbara Ferrer: For the state. A state health department?

Unidentified Speaker: No, state education.

Dr. Barbara Ferrer: State education. Okay, great. Anybody else that I missed? Okay, great. Also, how many folks in the room deal directly with clients? You come in to contact with folks every day. You’re either delivering services because you’re a clinician or a social worker. Anybody? Folks stand up who are working directly with clients every day. The rest of you, I’m assuming you’re in management positions, administration positions, educational positions, teaching. Am I right? I miss anything? Anybody else doing anything else? Okay, great. How many folks are originally from, born and raised in the Midwest? Is that what we call this area? The Midwest. I’m not from here. You could just stand up. Let me see. A lot of people. Okay, the Midwest. How about people from the East Coast? West Coast? Anybody? A couple, whoa, hardly anyone. How about people born outside of mainland United States: Hawaii, Puerto Rico? Any international folks? Okay, well great. That just helps me know a little bit, so thank you. The last question I wanted to ask, and I actually don’t need people to answer it by standing up, but just to think about it, is how many of you think about the color of your skin every single day? Because I’m going to do a presentation today that’s a little different from what I usually do. I usually have this overhead read something like, “Taking action: The Boston Public Health’s Commissioned Efforts to Eliminate Racial Disparities in Health,” and I changed it because I don’t really want to focus on all of the different dimensions that at this point come into play when you talk about eliminating racial disparities in health. I actually just want to talk about efforts to deal with racism, and I’m going to talk about what I call undoing racism. I’m hoping in the presentation that I’ll cover two major areas. The first is, I’m going to talk a little bit about what is racism and what I think its relationship is to health status and disparities in health outcomes. Then I want to close with a framework, a set of strategies, a set of activities that I think health departments, health institutions, health care institutions, clinics, educational systems can use if they’re serious about wanting to eliminate racial disparities in health. I don’t know how well you can see this, but this data comes from Boston. I actually don’t think it’s much different than the data you would find in a lot of urban centers, particularly the East Coast. We looked at 20 health outcomes that we normally track on, in terms of the Black population in the city and the White population in the city, and in 15 of the health outcomes, we found that Black people did far worse than White people. What’s even more amazing about this is if you do this going back in time, the data didn’t really change. There’s always been a tremendous gap, and I think Richard’s data from the national level showed the same thing, between health outcomes for Black folks and White folks. The issue for us was we’ve done a lot in the city of Boston, or we thought we had done a lot, to deal with the issue of health disparities in outcomes, particularly our work in infant mortality. If you look on here, you’ll see that in--this is data from the year 2000--that Black babies in the city of Boston died at five times the rate of White babies. In the year 2000 in a city like Boston, we have 26 community health centers, we have seven teaching hospitals, where all of Boston residents give birth, and all those teaching hospitals have NICUs. We have universal health coverage for low-income pregnant women, and yet Black babies died at five times the rate of White babies. Not only do Black babies die at five times the rate of White babies, but their death rate, which is about 14 deaths per 1,000 live births, was greater in the year 2000 than it was in 1980 for White babies in the city of Boston. Now, that’s before Surfactant, that’s before Level III NICUs, that’s before incredible technology; White babies lived more in the year 1980 than Black babies lived, in a city like Boston, in the year 2000. My data isn’t so different than a lot of other cities. But looking at this, it became clear to us that we’re missing the boat, and I know there’s a lot of debate about what’s race, what does race stand for, what’s social inequities and what’s their contribution, socioeconomic status and their contribution. But for us, I think we came to the realization with the help of our community that one of the issues that we need to deal with, and for us we think the most critical issue, is actually the issue of racism. We’re pretty clear that racism is real and that racism exists and the racism, in fact, can account for some of the disparity that we’re seeing, and yet none of our initiatives in the city were directly confronting the issue of racism. There are lots of different definitions of racism, and I think they all stem from a concept that race is a political or a social construct, much more than it’s a biological construct. Again, I think Richard’s data would support that notion, and if you look at the history of how racial groups were defined, that too would support the notion that race is more of a social and political construct than it is anything else. Racism is in fact the acts by individuals or institutions, either intentional or unintentional, acts of commission as well as acts of omission, that oppress a group of people based on the color of their skin. There’s a group of folks called “The People’s Institute for Survival and Beyond.” They’re based out of New Orleans. This is their definition of racism. They call it “Race, prejudice plus power,” and they talk about prejudice as really being a preconceived notion, or an unjustified negative attitude that’s often based on a person’s group membership. I like that definition. There are lots of other definitions, but I think it captures the fact that it’s not just about prejudice; it’s about having the power to actually act on that prejudice. Dr. Camara Jones, who is now over at CDC, has talked about three levels of racism, and I want to quickly mention what they are, because again I think it may help inform the kinds of strategies we need to think about if we want to address issues of racial inequities. She talks about institutional racism, and institutional racism is a differential access to goods and services, based on race, and there are lots of examples of this. I’ll just list off a couple. The banking industry redlining, not giving mortgages; to this day, if you look at studies that are done at the national level, you’ll see that Black people are much less likely to get loans than White people, even when you control for all sorts of confounding variables. Housing segregation, patterns of where people live, patterns of who rents to who, patterns of how people are afforded access to basic goods and services, depending on where live, huge differences. Public educational systems: our public education system is essentially based on local taxes. Local taxes are again based on who’s living where, and I certainly know that if you live in the city of Boston, there’s about $6,000 spent per year for a child who’s educated in the Boston public schools, and if you live in Wellesley, a very wealthy community, there’s about $11,000 per year that’s spent to educate by those young children. Differences--there’s also--something happened here, but personally mediated is another level of--something happened to my overhead, I apologize for that--is another level of racism that Dr. Jones talks about. Here, what she’s talking about is what we call individual acts of discrimination. This is when Black people go into the store are much more likely to get followed by a detective, when a Black person goes to a doctor for an upper respiratory infection and the first or second question that they’re asked is have they had an HIV test. I’ve gone in for upper respiratory infections and I’ve never been asked that question. Internalized racism, and this again important to distinguish, this is the acceptance by members of the stigmatized race about their own inferiority, and here those of us know that the difference between light skinned and darker skinned, big issue in communities of color. I’m Puerto Rican. Some of my family is quite dark, some of my family looks like me, and from the time I was little, I was told not to go in the sun because I didn’t want to look like Tio Roberto and get darker. So again, this is internalized racism.

Unidentified Speaker: (Inaudible).

Dr. Barbara Ferrer: Yeah, I don’t know how that happened, because I went through and looked at them before, but all right. I think racism actually affects health status in three ways. One way was obviously on the other slide, but the first has to do with sort of what I want to call differences in socioeconomic status. This issue about the relationship of poverty, this issue about the relationship of educational levels: these are real, and they definitely affect people’s health status, but I think racism contributes to these differences. I want to focus for a second on this issue of stress. There’s a lot of work being done, some of it actually out of the University of Chicago, on this issue of stress and the stress of racism. We all know about Type A personalities and how they’re more stressed, and because they’re more stressed, there’s more stress biologically on their systems. Their hormones are revved up, and their responses are revved up. Well, I would postulate that racism is a major stress. It’s a chronic stress, and it’s an intergenerational stress, and it too wears down people’s bodies. So I don’t want to mitigate against this issue of stress because I think it actually is very important. If you stress people out over long periods of time, chronic stress every single day, it is bound to have an effect on their health status. I would say that being treated in a discriminatory fashion day in and day out, little events and big events, is bound to, again, have an effect on someone’s health status. Differences in access to health care services: I think it’s affected by racism. Who’s uninsured: I think it’s affected by racism. Where health centers are built, where hospitals are built, where resources are put, where grocery stores are, again I think all affects people’s ultimate health status. The last one is sort of the differences in health care quality and treatment. I’m going to quickly run through some data just to show that those three areas that I highlighted, there’s actually a lot of data to support differences by racial groups. One is certainly neighborhood segregation. The city of Boston, you can see that in the city of Boston, Black people primarily live in four communities, really three: Dorchester, both South and North Dorchester, Roxbury, and Mattapan, and there are very few Black people who live in some of the other neighborhoods. Again, Black people and Latino people earn much less, on average, than White people. If we look at socioeconomic indicators for Boston, we found--and this is when you compare Boston overall to Boston residents. It’s not a White/Black comparison, and Boston overall has about 50 percent of the population being people of color. Nonetheless, Black residents look worse. They’re less likely to graduate from high school, they’re more likely to live in poverty, and their median income is significantly reduced. Insurance: people of color much less likely to have private insurance, much more likely to be uninsured, and for Latinos and African-Americans and Native Americans, much more likely to get their insurance, if they have it, through public insurance. Access to specialty care: again, big variations by the color of your skin, with people of color somewhere between two and three times less likely to have access to specialty care. These are the percent of people who reported having trouble getting access to specialty care. This tried to control for the issue of insurance status, so it looked at groups of people who were uninsured, who had Medicaid, and who had private coverage, and it looked at adults who reported being in either fair or poor health. So these were adults that you would assume would be likely to need some medical care during the year. As you can see, overall people of color were much more likely to have had no doctor visit during the past year when compared to White people, irregardless of their insurance status. The only difference that you’ll see there is for uninsured men, where both White and Black uninsured men have relatively similar rates. Again, the data on treatment is also pretty conclusive that there are differences in what folks are offered once they get in to see a doctor. These were folks with HIV infection, and there, again, you’ll see different patterns of care based on the color of their skin. The issue of health access is also important because it often does address the fact of when you don’t have health insurance, what’s the likelihood that you’re getting some common screenings? I looked at some data just from Massachusetts, and pretty much across the board, people of color were less likely to have health insurance, especially for Blacks and Latinos. They were therefore much more likely not to have some routine screenings that were done. I think it’s also important to note that there’s big differences in how people perceive the health care system based on race, where African-Americans and Latinos, we used other studies that have information about Latinos, clearly feel like they are not only not as well off as White people, in terms of access to health care, but that they worry much more about being treated fairly when they do have access to health care. Last year, the Institute of Medicine released a report called “Unequal Treatment,” and I want to just highlight a few pieces of information from this report, because again, I really want to work from a place where there’s, at this point, an overwhelming amount of evidence that suggests that (inaudible) all of the studies, and that they were always associated with higher mortality (inaudible).

They also in their sum--(inaudible) I think disparities in health care have to be thought about in the context of historic and contemporary social and economic inequality. I think this one of the most critical parts of their entire report because I think in this country we like to be ahistorical about a lot of things, like we’d completely like to forget about our history. We’d like to forget about what we’ve done before, what’s come before us, what’s been tried before, and how we dealt with issues, and particularly around the issue of social and economic inequities. We frankly like to pretend they didn’t exist, and I’m talking about the legacy of slavery, which in this country has never been fully dealt with. So I thought it was important that they noted that you need to think about disparities in health care among the different races in this broader context, because I think it helps those of us who are practitioners figure out where our work has to go. Again, I want to quote from The People’s Institute. Sometimes when I talk about this, particularly when I’m working with students, and I talk about the fact that we really need to deal with racism, quickly people will say to me, “That’s overwhelming.” It’s overwhelming to think about dealing with racism. Racism is everywhere, and what could we possibly do about it, particularly us in public health or us in a small group here. What can we possibly do? It’s been with us forever, and how do you deal with something that’s been around forever? I think this is really helpful to keep in mind: racism was constructed; it was made up, and something that was made up can be taken down if people understand it and have the willpower to think about taking it down. If you assume that it’s there because it always has been there, you create for yourself a big problem in trying to figure out where to go next. If you understand it was constructed and it was constructed for political reasons, it’s much easier to figure out what we can do about it. We at the Commission developed some principles. The Commission, by the way, is the city’s health department, and we developed some principles of antiracism work that I’m going to put up here, because it’s a useful place for, I think, health institutions, academic institutions, to think about starting. One is, we talk about race as being a political construct, and we talk about the fact that it establishes and maintains White privilege. There are two sides to racism: there’s the oppression of people of color, and there’s the maintenance of unearned White privilege, and you have to think about both when you want to deal with racism. There’s a need to develop a common set of definitions. We need to be able to talk about racism. If we don’t talk about it, it’s as if it doesn’t exist. But in order to talk about it, we have to come up with a common set of definitions. To undo it, we actually are going to have to change our decision making structures, that at its heart, racism flourishes in the kinds of decision making structures that have been set up, and if we really want to deal with it, we’re going to have to face that fact and think about really moving decision making power out of our hands and allowing for it to be in the hands of the people we’re serving, and the people we’re serving is the community. That’s who I like to think about, and people who have a hard time defining the community, I don’t think it’s so hard. The community is the people you’re providing services to, or you’re supposed to be providing services to. There are the standard three public health core functions, and I think you can understand the work that needs to get done around dealing with racism when you look at the three core functions. Assessment: how is racism at play here? That’s a really important question to ask everywhere we are. Policy development: what kind of policies are here that allow for racism to exist, and what kind of policies do I need to put in place that would dismantle, particularly institutional racism? Assurance: what organizing strategies would be effective in bringing about change? None of this is easy because we’re public health practitioners by training. We’re neither community organizers, nor are we folks who have grounded our work in, for many of us, in policy and policy development. Those three areas I talked to, where you see the effect of racism in the health outcomes, are places to start thinking about the kinds of activities you may want to focus on, and these are really sort of national activities that people can think about. If you want to think about how you’re going to deal with the fact that there are huge differences in people’s access to care, one thing is to consistently remember to support and fund neighborhood-based providers. Many of those neighborhood-based providers are in fact in communities of color. They’ve been there for a long time. They tend to be institutions that support communities of color as well, by providing jobs, places of employment, and career ladders for people who live in the neighborhoods. You need to reduce barriers to health care utilization, and to work to protect the few publicly funded programs that are still left. Differences in treatment: think about antiracism training. I’m not going to call it cultural competency training anymore because I think that term is getting misused, and I think it really needs to be antiracism training now. We need to have more medical interpreters. We need to be able to review provider practice patterns. There are quality assurance projects all over the place, but one of them should be about looking at people’s practice patterns and seeing if, in fact, there are differences in treatment based on people’s race and ethnicity. If you don’t know where the problem is, you can’t really figure out how you’re going to fix it. We need to do the same thing about our institutional policies. We need to work closer with the community. People have talked about setting up community review boards, almost on the model of an IRB, and we need to identify what our best practice is. A lot of times, when you look at the Institute of Medicine report, one thing that jumps out at you is how much discretion there is in clinical practice, and some of that discretion is always going to be necessary, but some of it is just because we haven’t taken the time to write down best practices and to put them out there and to give them to folks to help it guide their practice. In terms of dealing with sort of differences in socioeconomic conditions, here I think one of the most important things we need to do is really talk about racism, have forums where we as community get together and talk about the issue of racism, and we also need to get back to this notion of doing community mapping and stop talking about individuals at high-risk, and start understanding that the environment in which people live is what’s placing them at highest risk. We developed a framework at the health department where I work that allowed us to really get very specific about the work we wanted to do, and we basically said that there were two areas we needed to do our work in. One was we needed to do some political work, and to really address head-on the issue of racism. But the other was that there were actually quality improvement projects that could happen within the health care system itself that would address racism and that would address inequities that would get us further down the road, and that both these tasks needed to happen at the same time. We came up with three strategies to guide our work. The first is that we wanted to build and support community partnerships, and that was really getting at this notion that we need to be better about both hearing the voice of the community and allowing the community to take leadership. We needed to clean up, internally, our own house. We all work in institutions, and there’s a ton of work that needs to get done at home about creating an antiracist work environment. Then, we needed to look at what we were doing with our external money and our external resources, and align those activities so that they, too, could address racism. I’m going to put on, quickly, some ideas that we came up with for ways to work in each of these areas. One is we thought that this notion of establishing a community review board is really important, and especially to be able to train folks so that they could have some oversight over research and evaluation activities. I’m sure I’m in the same place many of us are, which is an RFP comes across our desk, and now there are a lot of RFPs that talk about addressing racial disparities in health and that actually want there to be community participation. I look at the RFP. I quickly gather a couple of folks that are in the room, or in the building, we come up with a great idea, we write it out, and then we go find a community group to latch onto that idea. It’s not like the ideas are bad, but they’re not the community’s ideas. We never take that RFP out to the community and sit down at the very beginning and say, “Here’s an RFP. Here’s some money to work on an issue. What do you think it makes sense for us to work on?” These are places where we’re going to have to structurally create some mechanisms in order to force that kind of change. We talked a lot about sponsoring undoing racism training, not just for the staff that work with us or for us, but also for community residents, and that, in fact, undoing racism training allows people to have a fairly safe place to talk about these issues, and to come to some common understandings and common definitions about what racism is and what kind of work we might need to do if we wanted to deal with it. We also talked about needing to be able to have a better sense of how racism manifests itself in our communities, and that we’re going to have to work pretty hard to develop the kinds of questions that you would ask to see how racism is at play. Now, right now we’re kind of using race as a proxy for racism. I mean we don’t really ask people questions about racism. We don’t ask people questions about racism, and we don’t measure the impact of racism on a community. The other thing we thought was that we all needed to participate more in other community-based activity, that our staff need to be out there, listening. We need to hear what people are saying in the community not just when we’re working with them in our jobs, but when they’re together in their own communities doing their own problem-solving. We’ve come up with ideas like allowing people to take staff time, work time to participate in community-based coalitions so that they could do more listening and they could be more in tune with what the issues were in our communities. We have a whole laundry list of work that needs to get done internally, and in fact, we have more ideas here, and that’s probably because most of the people at the commission were very quick to be able to identify places where we could do work internally, both letting us know that we have a lot of work to do, but also letting us know that people are ready for a change. One thing is we have to get a team of folks who are going to guide this work. This can’t be just the executive office, or can’t be delegated to your minority affairs office. This has to be a team. It has to cut across the entire agency. We needed to figure out how to work better together in less of a hierarchical manner as well. Oftentimes, even when we put together teams, it’s the directors and it’s not the line staff, and here, it would be very important to get perspectives from everybody who was working in the agency. We needed to have some sort of safe grievance process where people could actually bring complaints, and the suggestions right now are that it needs to be multiple ways for people to complain about discriminatory behavior within the institution. We did have a list of activities that came out of this work, including having antiracism training for all of our staff. We have about 1,200 people. The training of right now is a two and a half day training. We’ve got about 200 people trained. It’s both a resource issue and a time issue, but we have a commitment to get everybody trained. We think it’s really important. We also think that it’s important ourselves to do some monitoring, both of who works for us, what are their opportunities for moving on and up in the agency, how much do we retain people, and what kind of diversity can be encouraged at all levels of our institution? We thought that it would be good and we’re working on a tool that we could use that actually allows you to do work with both your staff, your consumers, and your board to try to assess “where are you,” in terms of doing work around institutional racism and addressing institutional racism, and then set quality improvement projects based on what you identify as challenges, and then be able to measure your progress as you move along through time. But it was important to note, “where are you,” in terms of being a culturally competent institution, in terms of being an antiracist institution. What are you doing good? Where are your failures? Then, how do you work towards addressing the challenges? We thought, from a policy perspective, that we had to sort of redo our mission statement, which really doesn’t talk about racism at all, and that we’ve got to make it so that fighting against racism becomes a core public health activity because that allows you, then, to set performance measures that will hold you accountable to this work. Some smaller things, we’re looking at things like our sick leave policies, our bereavement policies, all which serve, actually, to perpetuate a racist work environment. We have a sick leave policy that says after eight days of being out, you’ve got to sort of come in with doctor’s notes or it looks like poor performance. The way we got to eight days was that was sort of the threshold at which most of our employees were using their sick leave. Well, when 60 percent of your employees are White, you’re inadvertently penalizing people of color who, the data shows conclusively, are sicker and will need to use more sick time if you set the threshold based on the experience of a predominantly White workforce. The same thing with our bereavement policies: they only recognize a nuclear family. They don’t allow people to take time off for their aunts dying or the grandmothers dying, and many people of color, many immigrant families, their cultural affiliations are very different, and the people who raised them may be different, the expectations of who they’re to honor and spend time with are different, and we need to make sure that we acknowledge that, because again, when people are out a lot, it gets to be a bad mark on their record in terms of job performance. Establish recruitment and retention policies. Again, we have a lot of work to do here. Most importantly, we started working on establishing standards for community inclusion. What does it mean to include the community in the work that you’re doing, and every single program--we have 32 different programs within the health department--need to sort of look at the work they’re doing and figure out how that community’s going to get involved, and we need to set some standards to guide that work. Other things: what does it mean to have culturally competent health education materials? We don’t have standards in our health department that say you always have to translate. Some people translate when they have money, and sometimes people don’t translate. “Oh, I didn’t have enough money, Barbara, we couldn’t translate this.” Well, that’s not really acceptable, to be honest. “I only do it in English.” Well, 30 percent of the people in Boston have as a primary language some other language, so it doesn’t make sense to continue to say you’re only going to do it in English because that’s what you have the resources to do. Maybe you should only do it in the other languages first, and then come back and do it in English, I’m not sure, but there definitely is this sort of “We do it in English first, and then it we have money, we do it in other languages,” and some of that mentality is what I’m talking about. We need to figure out what the standards are and change them. The other thing that was a big issue is we don’t even have a uniform standard for how we collect information on race and ethnicity, nor do we always collect information on ethnicity, which when you talk with the community, becomes critically important. If you look at the census data on Latinos, and you see how Latinos sort of designate themselves by race, you’ll find that the vast majority of Latinos under “race” pick “other,” because for us, “race” means “Puerto Rican,” “Dominican,” “Salvadorian,” it doesn’t mean “Black,” “White,” et cetera, and we’re not capturing that information. We just have them all lumped in “other.” Fully 48 percent of Boston residents who were Latino checked “other.” The vast majority of the rest checked “White,” and only about six percent checked “Black.” That’s not different than it is around the country. So we need to figure out ways of respecting where people are and how they define themselves, and show that in our data. It also allows to target our efforts better. Then, to refocus external activities, one thing is we’re a city agency, and we feel like we need to work with other city departments. Here’s a place where we actually have a sphere of influence. We work with the mayor. We sit in the cabinet. These are places where we can take this work and ask for other city departments to join in the effort. We also think that it’s important to work with your health care institutions, and to talk about both cultural competency training, antiracism training, all along the board for people who are getting trained as clinicians, but also to create a pipeline effort that allows for there to be a more diverse workforce, and we’ve started some programming in that area, as well. We’re doing some undoing racism training for providers. We’re requiring it as part of some of our grants, actually, that we make to community providers, and we are trying to mirror some behavior that we’d like other groups to do, which is to distribute annual health reports that talk about ethnic and racial disparities in health, so that there is, in fact, a track record, and a visible record on what is happening and where the disparities exist. The most controversial thing we’re talking about is actually linking some of our money to fund activities that actually reduce racial and ethnic disparities in health, and one way of doing this is to change the language in some of our contracts and to ask people to do some things in exchange for taking city dollars, to do things like collect client race and ethnicity data, to prepare reports that actually give out information on health outcomes by ethnicity, to develop projects that reduce any of the documented disparities that they find, and to actually have to undertake their own institutional cultural competency assessment every year, every two years, to sort of figure out where they are in their work. We’ve talked to some other folks in other states about whether or not you actually could think about changing some of the licensure requirements for clinicians, so that they’d actually have to have some cultural competency training in order to get licensed, and we’ve actually testified at a couple of legislative hearings in our own state, where we’re promoting that perhaps people go down this route, and again, these are controversial, and lots of big debates about going this route, but we think it’s worth having the conversations about this. I want to just close with what I think it takes to do this work. Obviously, I didn’t come to public health thinking this is what I’d be doing, but I think it’s where public health needs to be. In doing this work over the last couple of years, I’ve realized that there are some prerequisites that you need to put in place if you’re serious about undertaking this kind of work. I think you do have to have a basic commitment to social justice. I think it’s really hard to have this perspective if you don’t have a commitment to social justice, and I think you’ve got to come at this work with that kind of a commitment. I think you do need to be able to collect data, and I think you have to be able to use your data to demonstrate that there are, in fact, racial disparities, because even though the Institute of Medicine has made it clear that they think there are racial disparities every time you make a presentation, people will challenge the information, and you need to have the data. I think you have to ask a lot of questions, and most importantly, I think you have to listen to the answers, and particularly, this is in engaging the community in this work. I think we need better tools to understand and assess how racism is manifested, and here’s where I think there could be much greater partnerships with academic centers on figuring out how to develop those tools. One thing is- I think we as public health practitioners need to stop focusing so much on personal health behaviors. I’m a recipient of a Reach 2010 grant, and I go to all the conferences every year as the principal investigator on that grant, and I have to tell you that out of the 40-some projects that are being funded with this grant to reduce racial and ethnic disparities in health, I would say all 40 of them are concentrating most of their efforts on focusing on individual personal behavior, and we continue to gravitate towards telling people to exercise more and to eat better and to go to the doctor more, and we focus much less on the institutional barriers and the system barriers to allowing people to achieve optimal health. We need to have some leadership from the community on this. I couldn’t do this work if I didn’t have people from the community educating me all the time, and I’m blessed with a community of very strong leaders on this work that both keep me honest and also keep me guided and focused on where I need to be. I think if you don’t have that kind of community leadership, it’s hard to do this, because I don’t have the skills, and there are a lot of other people who did. I think you need to work across issues. This is hard for us in health. We need to work on education. We need to work on housing. We need to work on economic equity issues. This isn’t just one issue, and we can’t just stay in our own little realm and do this work successfully. Probably most importantly, you’ve got to take some money and put it towards this work. The work’s not cheap and it’s not free, and I know this is a hard time for everybody. We’ve all faced slashed budgets, but even with slashed budgets, if you’re serious about eliminating racial disparities in health, you’re going to have to take some money and put it towards antiracism work, because it costs money to do this work, and without it, you’re not going to be able to make the changes, I think, that need to happen. Thank you very much.

Joan Kennelly: Barbara, thank you very, very much. I think both of our presenters have really presented us with some stimulating and very thought provoking ideas, and in my opinion, I think they’ve really set the bar a little bit higher, both for our research as well as our practice. So we actually have about 10 minutes now, and we’d like to open it up, and we can even stay a little bit longer. I apologize, again, for our disruptions to your presentation. Are there any questions for either Barbara or Richard, or any comments (inaudible)? I’m sorry. Could you go to the microphone for the webcast? We’ll just pass this microphone back and forth between.

Unidentified Speaker: Thank you for both those presentations. They were really very good and thought provoking. This is a question for Barbara. You had said that you liked using the term “racism”--I can’t remember the term you used, but “racism elimination” as opposed to “competency training.” You did use both in your presentation. I’m wondering if you see those as different things, if you can expand on what you said about the term cultural competency being misused, and what, in your view, does an ideal cultural competency training look like, if you can say that.

Dr. Barbara Ferrer: Yeah, that’s a tough question. They are both in there. One of the reasons why I changed the title is because as I talk and as I go around the country and I talk to different local groups about this, I realize how misused some terms have become over the last year, and “cultural competency,” unfortunately, is one of those, I think. Originally, I think it had as its core a belief in sort of challenging discrimination. I mean I think there was a definite understanding that in order to be culturally competent, you had to have at your heart a basic respect for people, which really flies in the face of racism. I think, unfortunately, if you start looking now at cultural competency curriculums, they really don’t talk about racism any longer, and they don’t talk about sort of what I would call the power analysis behind racism, and it really has become sort of much more “If we understand that people talk different languages and eat different foods and have different patterns of living within their family structures, we can deliver better care,” and in some ways, I don’t think that’s ever what cultural competency was meant to be. I think it really was meant to challenge a notion that people are, in fact, oppressed based on the color of their skin, and that you need to understand that history of oppression and what part you play in that history of oppression in order to be a culturally competent provider, in order to be a culturally competent institution. But when I look at what’s being done now, I see less and less of a focus on that work, and more and more of a focus on sort of what I call the “white bread” part of cultural competency. So I try to now use antiracism training instead, but I haven’t updated all the slides, obviously. But the other thing is the term racism sets off people’s sort of buttons, and people don’t like to talk about it. People don’t like me to talk about it. People don’t like me to put it in a title. I’m constantly getting, “Do you have to like have this in our face? I mean can’t you talk about these topics some other way? Can’t we get to this later? Can’t you close with racism?” Really, people tell me that all the time, that it puts people off. Then people don’t really listen to what I’m saying. They don’t really listen to the information that’s being presented. I’ve come to realize that may, in fact, be true. That may, in fact, be true, that people may not listen, but I’d rather be true to what I’m talking about, I guess, and have people listen, and then at the end have me throw in the word racism. I mean I am talking about racism, and I think it is the biggest issue facing us in the health department, and that I think now it’s important to use the word.

Joan Kennelly: Thank you. Yes?

Unidentified Speaker: I have a, I guess, comment and question for Barbara. I’m a first-year MCH student at the School of Public Health here, and I am taking a class with Dr. Kelly in community assessment and we’re doing a project in Humboldt Park. I like the word racism because too often I think we use the word prejudice, which is a softening, I think, of the whole issue, and we had a speaker when we attended at the Café Parte, and he brought that point up, the difference between prejudice and racism, and I like racism because it really focuses on the issue, and I think I agree with you with about our fears of--do you see that people are afraid to talk about racism because it’s a real self-examination times our own behaviors? I don’t know if you’d agree with that. Also, I had recently read a paper about the Puerto Rican community and the problems being considered the “other underclass,” because their health statistics are much worse than the Black community. For instance, I was reading that in New York City, Blacks own twice as many homes as Puerto Ricans. Here in Chicago, they have the highest rates of asthma out of any ethnic group in the city of Chicago. So I was wondering if you felt that about those issues, too.

Dr. Barbara Ferrer: I’ll start with the last issue a little bit, sort of the paradox of the Latino community. I mean in Chicago, perhaps you’re seeing that they have worse outcomes than Black Americans in your community. In many of our communities, we actually don’t see that. We see them have some worse outcomes. You could look at a handful of places where you’re going to see the Latino community doing worse in terms of health outcomes. But you’re absolutely right. When we look at their socioeconomic status indicators in many of our communities, they do tend to be living in very high rates of poverty, they have much lower levels of educational attainment, and they also have lower levels of home ownership. I think one reason why I started this conversation talking about racism and not race was because this issue of race is complicated, and what’s particularly complicated is how much it hides subpopulation groups; it’s sort of like all Blacks are not the same, all Asians are not the same, all Latinos are not the same. If you disaggregate information, you’ll find tremendous differences. So for example, if you disaggregate information about Blacks in Boston, you’ll find that U.S. born Blacks, and I’ve looked at this mostly around birth outcomes, U.S. born Blacks doing worse than any other group of Blacks, followed by Haitians, followed by Jamaicans, followed by women born in Africa. If you look at Latinos, you’ll find that, in fact, for Latino women, if they’re U.S. born Puerto Ricans, or Puerto Rican-born Puerto Rican moms, their rates of, for example, low birth weight, are almost equal to those of American-born Black women. So they have very high rates. But Central American Latino women have very low rates of, like, low birth weight or infant mortality, and again, some of this you really need to disaggregate. Many of the Central Americans that come to Boston are there as immigrants, so there’s somewhat the healthy immigrant effect. They also come to our country full of hope; this is a land of promise for them. They haven’t lived here long enough yet to be subject to the kinds of discrimination and social policies that many African-Americans have lived under, and many mainland-born Puerto Rican women, for example, have lived under, and that level of oppression may, in fact, account for some of the differences. So I think, again, this is a hard subject because the data is really often aggregated in ways that make it pretty difficult for us to actually understand what’s happening to subpopulations or ethnic groups within the racial categories that may, in fact, help us better understand, for example, the role of racism, the generational effects of slavery, for example, versus what happens to new immigrants in this country. But I hope that answered some of that question on that, and then I do think it’s hard to talk about racism, and I think it’s hard to talk about it if you’re White. If you’re White in this country, you’re part of a group of people who have a lot of unearned privilege, and it’s often hard to talk about what that means, and to talk about it in a way that allows you to take action is also often hard. So I do think it’s a hard term, and I think it makes for a difficult conversation, but it’s a conversation we need to have.

Joan Kennelly: Thank you. Are there any other questions or comments? Please.

Faye Eldar: I’m sorry. This question is also directed at Barbara. I’m a parent who is a volunteer for Family Voices of Illinois and we only do one thing: we share information with other families, and we’re just two mothers at their kitchen table. We deal with challenges in our daily lives, and just, if you’re interested, the other parent who does that is Puerto Rican, and we do provide services that we pay for out of our own pocket to keep a phone line and an email in English and Spanish for parents, but we have benefited from the Maternal Child Health Bureau work in the past 20 years of mandating parent/professional collaboration, and in the world of children with special health care needs, even though it doesn’t happen to a great extent, it is expected, and it’s across the country, and there are small numbers of families in just about every state who are involved in collaborative activities, and the states are ranked, and it has to be in the Block Grant Application. But the thing we have always wondered about is: why is there no parallel in core maternal child health programs? We don’t hear people talking about it. We don’t hear people encouraging it. We don’t hear people budgeting for it that people who are your clients or your constituents should be your partners, and we don’t know what to do about it, and I’d appreciate some comments from you about that.

Dr. Barbara Ferrer: I don’t know what to do about it either, really, to be honest. I mean I think there may be two things. One is, like, the history of how you folks, like with Family Voices, got yourselves together and were able to, in fact, really change legislation, and get a mandate, and sort of the power that you had when you organized, and the credibility that you had at the Federal level, really, I think, made a big difference. I mean I know that we’ve never really been able to accomplish that, particularly when we look at the issues that affect low-income women and their children, and to sort of mandate that the Block Grants, for example, create partnerships. It has seemed to sort of fly in the face of a professional model of care that’s really developed around how we do public health, which is there are those of us who are practitioners, and we provide services to our patients and our clients, and we do it out of the goodness of our heart, and that, therefore, makes what we’re doing really, really good. So I would think you could advise us better about--Faye Eldar: No. I mean the only thing I can tell you is when I speak to groups of parents, I always tell them, “Don’t be intimidated, because if it wasn’t for us, they wouldn’t have jobs.” But it really needs to come from the top down, and then, of course, people sometimes say, (inaudible) we want a parent to talk about this. We want a parent to come to a meeting, and we’re called the--there’s now a pharmacy advocacy group and they’re having a meeting about asthma in June, and could somebody come to that? Of course, we ask, "Do you have funding, at the very least, for travel and childcare?" Everyone says, “We don’t have money.” But it’s, like, you have to think about this when you plan your budget. How are you going to support consumers? The other day I was cleaning my desk. I read something that I wrote 10 years ago about early intervention; about we want parents to testify. We tell them, “Oh, can you go down to the state capitol next week or tomorrow?” Well, you don’t have a credit card, you don’t have childcare, and you can’t take time off from work because you used all of that to take your kid to the doctor. It’s not going to happen. So what can people do to make it happen? I wrote, 10 years ago, "Couldn’t the providers go around when the families are waiting in the waiting room, or they’re on a home visit, with a camcorder and get their testimony and take it with them down to the state capitol?" I don’t know why we’re still talking about it. I don’t know why it’s still an issue.

Dr. Barbara Ferrer: I mean I feel unfortunate that I don’t--I totally agree with you. I mean it’s a sad place to be where we’re still trying to figure out how we’re going to get more involvement from the people we provide services for. You’re absolutely right; our clients are why we have our jobs, and it would be nice if there were a respect in terms of resource allocation to support their being able to give us adequate input, feedback, direction in terms of what we’re doing. We’d probably be making a lot less mistakes as well. I mean I don’t think it’s by chance that we constantly miss the mark in public health on developing a lot of initiatives or programs that are very successful. I think we have a model that doesn’t allow us to get the kind of input we need, and we consistently miss the mark. So I think it’s one of the areas we all need to work harder in, and that’s why I was saying, one of the big things for us is this idea about developing community partnerships and what does that mean, and it does, again, mean you have to have the money there. You have to put some money there. You have to pay people. You can’t ask people to just volunteer their time. They need to get paid and reimbursed for their time, and not just for the childcare and transportation, but for the time. We get paid for our time; they need to get paid for their time. I think these are concepts while not new, they’re certainly not being widely used.

Joan Kennelly: Thank you. No. Yeah. It’s getting to be 5:15, but that’s fine. If people want to stay here, I know--but actually, Barbara needs to catch a plane. So I think we’re going to take one more comment and question. Oh. Well, I think we have to take two, then, because Richard hasn’t had any questions. Okay.

Unidentified Speaker: Yes. In addition to your comments regarding collaboratives involving consumers, probably some of you are aware that the Chicago Department of Public Health currently is implementing a grant called Community Access Program, and I want to invite the consumer that’s present here, because one of the things that is a very strong part of is consumer participation in the workgroups, and what we’re looking at is systems integration and development, and also as far as input in that whole name of family case management and the access to health care delivery system, and this is a result of a CISS project that, for the past two and a half years identified and developed a plan. So just to let people know that that is going on.