ABOUT THIS EPISODE
[00:00:33] Thomas LaVeist: Welcome everyone. Thank you for joining us We have a panel of speakers from across a spectrum of sectors shaping health equity. The panel will feature Sinsi Hernández-Cancio, Cara James and Al Richmond who will offer their perspectives on how they think about and address health equity. Sharelle Barber is Director of The Ubuntu Center for Racism, Global Movements and Population Health Equity at Drexel University. Sinsi Hernández-Cancio, Vice President for Health Justice at the National Partnership for Women and Families
[00:00:52] Cara James is president and CEO at Grantmakers in Health, and Al Richmond is Executive Director at the Community-Campus Partnerships for Health. Welcome all to this conversation. I’d like to make this a free-flowing discussion. So please feel free to chime in with your comments and insights. research, and advocacy to promote equity.
[00:01:12] For most of its history has focused on proving what people already know through their lived experience, that their discrimination that services aren’t available or affordable, communities are being polluted or schools don’t have resources just to name a few. Where do you think research in the past has failed?
[00:01:28] Cara James: First of all, thank you, Tom and Tulane for hosting this conversation, I’m excited to be joined by such illustrious panelists for this conversation. And I think, one, there’s been a lot of work on health equity and health inequities, over decades and lots of people have been responsible for this work, including yourself.
[00:01:46] I don’t want to say that the work has failed so much as I think one of the places that we have maybe relied a little too much on is the moral suasion argument. That if we show these inequities that we would get the change that we need. And I think that is clearly not happened. So I think there may be the premise of what it takes to our theory of change is one of the things that we may need to focus on and I would say that where we need to do more work is, again, thinking about a paper that you have. 2009, looking at that economic cost, tying this to the money, to the things and the outcomes that people with the money care about, and how we make that business case for health equity or some of the places where I think we need to focus more of our attention and look less maybe for that moral suasion argument.
[00:02:32] Sinsi Hernández-Cancio: I would a hundred percent agree with, care the assessment. It’s very, when I don’t agree with Cara, just to be honest. thank you so much. Dr. LaVeist for inviting me to this panel, and to be in community with, so many excellent, leaders in this field. I think the other place that, I don’t want to say it’s a failure, but I think it’s, surely an area of growth is, that we have gone from. Thinking about inequities and disparities, from black, white to black, white, and other. And I think that a lot of the work that people are really leaning into now more is dis-aggregating it out, right? and getting rid of that horrible other category, because in addition to it being dehumanizing, it’s simply not helpful, from an analytical perspective.
I think that one of the biggest challenges, from the model of healthcare, having to be, a wealth generating activity, as opposed to the health generating activity, is the fact that we just don’t have solid data, that will not only allow us to target resources and interventions in ways, that are most needed, but also.
[00:03:42] Sinsi Hernández-Cancio: That promote the kind of accountability that we really need to hold. the political and economic systems accountable, one, we have to measure what we treasure, and we don’t measure right. Another way of thinking about this as you don’t count unless you’re counted and that’s something that I think we all need to lean into more, and we have an opportunity now with the way that COVID has elevated, how particular communities are doing, to build on that momentum, hopefully, so that we can get to better data systems that are more transparent and equitable.
[00:04:14] Thomas LaVeist: Yeah, thank you for that. And since he please just call me Thomas, Al you looked like you wanted to weigh in.
Al Richmond: Yeah, I think there’s some consensus among all of us around some of shortcomings of research. And actually, I would just weigh in by saying, I think there’s been an over-reliance on research quite frankly. And, what comes to mind is, this whole idea, that knowledge production in and of itself actually validates. inequities when it’s really, to me, the lived experiences, people have been saying this for years. How much more research do we really need? and how many more dollars do we need to spend in the area of research at the federal local level to really, bring home the case that there are inequities, they are real, and they are systemic in nature.
And some of my concerns as a project out of Chicago, I’m going to paraphrase a title as a, why am I always being researched where, African Americans in particular, Chicago are saying, why are you always researching me? what good does this research do? we know that there are problems I think it’s the shortcoming of over-reliance on research. Sharelle what do you think we’ve talked a lot about these issues. I would love to know what you’re thinking there.
[00:05:20] Sharrelle Barber: Yeah, no, I think that’s a actually right on, and I think that it’s also been on a lot of research on the problems and not on the solutions.
So we have focused, and it was necessary, right. To, document the inequities. But I think that one. Almost over relied on looking at the pain and that appreciating the power of communities that have been harmed by these systems and structures of oppression. and also, not recognize the ways in which communities who have been most harmed have come up with solutions, pretty powerful ones in the face of this great harm. And the pandemic is a prime example of that. You saw at the very onset of the pandemic when local state and national government failed communities. It was communities who came to the aid, to help with food and here in Philadelphia, we had the black doctors COVID consortium who was testing and, providing vaccinations, and off of little funding, but they saw a need they developed a solution. They executed that solution, and it is a story of how you can look at the inequities, but then act not just sit on the data, sit on the quote, unquote knowledge production. So, I do agree out that this idea of, communities are tired of being researched. They’re ready to get to the solutions. And I think in fact, those who have been most harmed by these systems and structures. Our prime to be some of those solution generators
[00:06:47] Al Richmond: I was just going to say, I think that, as I listen to Sharelle, it’s like there’s almost a paternalistic, attitude around research, right? It’s like we know best, and we’re going to tell you what’s best and our research is going to document it. And we’re going to tell you the way forward. And so, for me, I just been thinking about how much more research do we need around. I remember some of these projects that have gotten funded around, increasing physical activity among African American women without even looking at what are some of the challenges and barriers that women may face every day.
They may not be exercising simply because they’re working from 8:00 AM to 11:00 PM at night. and so, what are they going to exercise? yeah, again, it’s this paternalistic attitude around research and it’s not real until the research says that it’s real.
[00:07:28] Cara James: And what I want to tease out a little of a dichotomy that I think we’re talking about, there’s the, how we do the research and there’s the actual research. One of the things, so for eight years, I sat at the director of the office of minority health at the centers for Medicare and Medicaid services, the research is critical because we can’t make policy on antidote. And even though we know there are problems and I would say health equity research in particular has a higher bar for action in part because people use that as a way to not do things. So we need the evidence and as much as it’s, in a frustrating, in terms of documenting, we still need that national health care disparities report to show that 20 years later, 95% of the disparities have largely remained unchanged because without that evidence, we can’t move forward.
But I think what Sharelle and Al you guys are talking about really is the, how we do the research, what we’re focusing on and what’s needed to move it because the evidence alone doesn’t make for action. But I think there’s still that kind of conversation of there are some who still are not believing that there are disparities or believe that they are the result of, whatever over there, and that’s not what we need, but to your point, as well as thinking about this from an asset driven perspective, rather than a deficit model is really important, but we need the research focusing on the solution so we can see how to expand those, to move forward.
[00:08:52] Sinsi Hernández-Cancio: Yeah. And I want to add to that because. It’s not a question I believe we need the research, on solutions like people have said, we need to hold, those, that fund research in general, especially health systems research and medical research, straight up, more accountable for actually, focusing on equity right in my opinion, there should be no program out of the federal government or out of any university that is allowed to report without desegregated data, right? Because we don’t care just about the average outcomes, the distribution of outcomes matters. And as long as we don’t hone in on that, we’re not going to make progress. But the other thing is. I think that it’s true that for many things that are completely inappropriate, we’re tired of being researched, but there’s also things that we are not researching.
Like I as a Puerto Rican woman who almost died giving birth, am really frustrated the last time, maternal health outcomes, where research in any particular way, knowing that these inequities exist, what’s 15 years ago. lumping us in with the rest of the Latinas doesn’t work because. Our experiences of the community, which we know exist when you look at Boston or when you look at New York city or, some specific areas get completely diluted out when you lump us into everyone else.
And let’s not even talk about the huge differences in the API communities and the fact that small sample size is constantly gets in the way when we try to look at indigenous communities. So, I’m a believer of research. I do believe that research is not the only thing though. You need to have as an advocate, because more than anything, I’m not a researcher.
[00:10:23] I’m an advocate. We need to have the one, two punch of the facts and the story. The egghead stuff, the wonky stuff, and the heartstrings, what it means to real people stuff. And that’s how we win. and the last thing I’ll say, because I’m getting a little bit animated here because the things animate me, is that we already know that, there’s been a lot of work in the last several years, trying to get more diverse, people in research, right in medical research, which has been a challenge for very good reasons. we don’t have, we like to talk about evidence-based medicine, but you know what medicine, first of all is 50% art and not science. And that’s what the national academy of medicine says. I’m not making that up. and number two, it was generated on whose body then whose experiences not on mine. and we take it on faith that whatever works for a white man is going to work the same way for everyone else. sometimes that’s true. Sometimes it’s not, but we don’t know. We are mostly guessing, and we need to do better than that. We need to be transparent about that.
[00:12:23] Thomas LaVeist: Let me push you a little bit on that. So doesn’t that create a mixed message. On the one hand, we’re saying there’s enough research. We don’t need more research as a group in Chicago saying they don’t want to be resourced anymore. On the other hand, you’re pointing out that much of what we do in the health sciences is the result of research done on white males that were extrapolate to everyone else.
[00:11:42] Sinsi Hernández-Cancio: So my answer is that it depends again on how the research is constructed and who, and what you’re researching. I don’t think we need to research anymore as much on identifying problems because we know they are other than what Cara was saying, where we need to continue to document to build the evidence because I’m a lawyer by training. So, I do think about evidence, to building the evidence base, for continued action.
Not that a problem exists, but the why of the problem is what we really need. we need people to understand that it’s not because we make crappy choices. I’m sorry. I should not speak with that kind of language that, we make bad choices, but it’s about what is out there? What are the choices to be made and research like what happens with weathering and the links that you were telling me, yours, and all of that is really compelling. but at the same time, even though we know, for example, the asthma albuterol does not work very well for black and Puerto Rican people. I want to know where the research is developing drugs that are going to be better for black and Puerto Rican people.
Because we have disparities in death rates. And there’s no good reason other than that, we haven’t done a good job in creating solutions and for people in this country to be dying of asthma. So that’s a lot more nuanced than don’t research me or I’m tired of the research. It’s who, what, and for what purpose? And are we looking for problems? Are we just that we know already exist, and wasting money and resources that way? Or are we looking for solutions? and what solutions actually work with whom?
[00:12:59] Thomas LaVeist So, Sharelle, would you like to respond to that.
[00:13:03] Sharrelle Barber: one of the things that I actually really appreciated your point about the, how these inequities came to be, because I do think there’s a lack of work that has really, fully engaged the complexity of these issues. say, you all talked about this idea that, health is produced because of these intersecting inequities, these intersecting systems of oppression.
And we have not done. I think the extensive work to think about how this, historically this plays out. How these, structures and institutions connect to one another and reproduce and create the inequities that we do. See. That’s actually something that I don’t think we’ve done enough of fact, if we can understand how we got here, it may produce evidence that it’s helpful for thinking about how we undo these things.
So we’ve built this system, this nation, this world that we currently live in that has produced the, staggering inequities on so many different health outcomes. And so how do we rebuild it? We don’t know how to rebuild it unless you understand how we got here.
And I think this pandemic has been an inflection point that really showed that interconnectedness, for example, we could have done all the testing, et cetera, early on in a pandemic. But if you didn’t think about workers, if you didn’t think about essential workers, if you didn’t think about what that meant for transportation, especially when folks were staying home.
If we didn’t think about, all of these policies, they were disparate policies, but that were coming into focus. During a public health crisis, and so to focus only on one aspect of the problem actually did not solve or didn’t, mitigate inequities. And so that’s where I think a really a good, nice, sweet spot is, to understand the complexity and really deal seriously with the complexity of these issues.
[00:14:39] Thomas LaVeist: So Cara, I want to follow up with something you said earlier that I thought was really interesting. You alluded to the work that, I had done some years ago on the economic burden of health inequities. I should say it, this is a little plug that we are coming out with a new and updated report this year. So we’ll have new numbers later this year yeah, I’ll send you a percentage of my zero that I get for that study. but you made a comment. You said that we need a new theory of change. And I thought that really resonated with me because it was early 1960s when the surgeon general, indicated that smoking was a carcinogen.
And now here we are nearly 60 years later and people are still smoking. So one thing that has been abundantly clear is that simply informing people. of things is not going to lead to change. And you said that we need a new theory of change. Say more about that? what do you think would be the components of this new theory of change if just informing people’s is not enough.
[00:15:30] Cara James: Yeah, I think it’s a great question. So, I think that the theory of change that I think we have had for many years in health equity, is that again, if we showed the inequities. People would work to address them. I think that is false. we are in a space now where more people clearly are committed to addressing these issues, but we do have a lot of folks who are not and are really just what I would say biding their time before we move on to the next bright, shiny object and go back to the way things were.
So, I think that part of what we need in this theory of change. Thinking about, and I like to say that we, for all of the things that Sharrelle just said, we need to be looking at the intersection of all of these issues for too long, we have thought about these in silos. Healthcare is in this silo. Education is in this silo, income. As in that silo, they clearly have been linked all along. We all knew, but I will say some others have recently woken up to that and that we need to have more of that intersectionality in our approach. And the way that we’re going to address the disparities, no one sector, academia, business education, healthcare is going to fix these.
So we all have to work together and strengthen the partnerships, many of which are already happening in community. But have these partnerships happen at a higher level, which means when we think about. What moves people? I think about a project that was looking at readmissions and a collaboration between the health system and the community development corporation up in Pennsylvania.
And they showed that they reduced hospital readmissions, ed visits for those. Who had frequent visits, but that wasn’t the outcome that the community development corporation needed to be able to show success. So how do we get more bilingual and multilingual to talk to business, to talk to education, to show outcomes in the ways that help them, continue investments or strengthened investments to move forward given this intersection. I think the other piece, and I’m going to the intersectionality. We do have data gaps. we do not have great data for a lot of those root causes that we think about. We don’t have great data on a culturation. We don’t have great data linking immigration and other pieces.
[00:17:42] And we have, as Sharrelle mentioned, we need to make some of those linkages clear between how do you get from. and the example, I will use Medicaid policy and payment to inequities and access and quality and disparities that we see because, it’s very clear. Medicaid pays a doctor less than Medicare who pays doctors less than commercial for the same thing. I think we all can agree. That is an inequity, a structural inequity that is in our system. And because of the other intersections that we have with income, disproportionately affects people of color. so how do we get better data and linkages to make that conversation more relevant and present to people are some of the things that I think we need.
And I think again, Sinsi says, she shouldn’t say crap, I’m going to use the reference, biggie. It’s all about the Benjamins baby. You’ve got to get to the money because that’s what people are focusing on and caring about for those who are holding the purse strings for the big programs.
And we need to be thinking about how we build equity into our policy programs for sustainability. So, we don’t need a special initiative or a special grant or some charismatic leader at the top. Who’s driving it.
