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AHLA's Speaking of Health Law
AHLA Convener on Racial Disparities in Health Care, Part 5: Civic Engagement and Making an Impact
AHLA hosted a one-day virtual convener on April 12, 2021 where participants discussed all aspects of health disparities and equity in health care, social determinants of health, the impact of law on these issues, and what can be done to address these issues now and in the future.
In Part 5, Dawn Hunter, Deputy Director, Network for Public Health Law, moderates this discussion about how community engagement can make an impact on racial disparities in health care, and how an organization can go from declaring an anti-racism policy to making an impact.
Watch the full conversation here. Access full video and audio recordings of the proceedings at americanhealthlaw.org/racialdisparitiesinhealthcare.
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On April 12th, 2021, a H L A, hosted a one day virtual convenor, where a panel of distinguished participants discussed important aspects of racial disparities in equity, in healthcare, social determinants of health, the impact of law on these issues, and what can be done to address these critical issues. This five part series presents each recorded session of the convener full video and audio of the proceedings are available@americanhealthlaw.org slash racial disparities in healthcare.
Speaker 2:Yes, thank you to everyone for such a rich discussion. I wish we could talk about this all day, frankly. Um, but we are gonna start to roll into our next panel on our last, very short, but I promise you very dynamic conversation on civic engagement. Uh, joining us, our Sarah Dilla, ed Ellinger, and Heather Walter McCabe, and anyone else who's on the panel who wants to contribute to this discussion. And I'm just gonna kick us off by saying, you know, we've heard throughout the day about communities, lady leading and being at the table. Um, we had high levels of engagement and voter turnout and the general election, uh, we saw, in particular, we saw healthcare organizations, physicians, nurses, et cetera, promoting voter registration as a way to help shape, um, health policy more broadly. And so I wanna start off this last panel by asking why is civic and community engagement so essential to addressing racial health disparities? And actually, ed, I'm gonna ask you to start us off.
Speaker 3:All right. So I'm, I work in the field of maternal and child health, and I argue that the greatest public health achievements of the 20th century was the 19th Amendment and the Voting Rights Act of 1965, because from when half of the population got women got the right to vote in 1920, the maternal mortality rate dropped nearly 100%. And the programs that got started in state health departments focusing on women and children actually came to fruition. Infant mortality also dropped tremendously. When women got the right to vote, they had an impact. And the next time when we really had a real decrease in infant mortality and maternal mortality was after the Voting Rights Act was passed, there's a huge impact of just having people's voices heard that has direct impact on health outcomes. We also know that this whole sense of belonging, a sense of feeling part of a community is a big determinant of health. And one of the ways, you know, it all relates around to the whole idea of, of social cohesion and having your voice recognized and being, uh, that you, you have a way to share your voice with your community, gives you a sense of belonging, and that's what really makes health grow in a community. And if you don't have that sense of belonging, you're not as healthy. We just see that where, where people who are engaged, particularly like people who, who filled out the census, the communities that filled out the census are healthier than the people who didn't fill out the census. Cuz they, they had a sense of belonging, they had a sense of connection. So civic engagement is, is crucial. It is one of the biggest public health indicators that we have.
Speaker 2:Heather or Sarah, do you wanna jump in on that? I will say really quickly, uh, you know, I appreciate every time I hear you talk about, um, the Voting Rights Act, and there's a lot of research about sixties era, um, civil rights legislation also re significantly reducing infant mortality rates during that same time period. Um, and, you know, it was so significant. And the next time we see a big drop like that is with, uh, Obamacare, a Medicaid expansion. Um, and that, and yet at the same time, infant mortality rates are still unacceptable for black, uh, Latino and American Indian infants, right? And so somebody might say, well, what, we had all this progress, why is it still a problem? And and that's something I wanna post to y'all. You know, this, we have, we have progress. Um, but why do we keep, need to keep, you know, working on this and why do we keep need to stay engaged?
Speaker 4:Sarah, did you wanna go or do you want me to? Okay. I mean, I, I don't know that I have a lot to add without being complete broken record from what I was earlier. Uh, though I do want to, um, specifically, um, mention, um, uh, following Professor Arby's, um, uh, conation earlier, um, not to, um, forget about the role of a stigma which is either made better or exacerbated by policy. Um, a lot of my work is done in the, pardon me, dogs joining me, um, the L G B T Q spaces, um, and, um, particularly, um, a lot in, um, folks who are transgender, um, and, and anywhere within that community. Um, and I think that it's really important to note how some of the dynamics that we're seeing impact, uh, multiple different communities right now are really playing out for the, um, transgender communities. Um, it's, it's, and thinking about the direct health impacts with the anti-trans bills, um, making it so that a youth cannot get the medically appropriate care, uh, recommended by WPATH and others. Um, th that's very direct. But also even looking at the athletic bills or other bills, um, you know, that formally the bathroom bills that, that now don't exist, but continue to be brought forth in 16 states or so a year. Um, what, just even having these bills introduced, let alone passed, which is happening this year, can be doing to a whole group of people and all the people who love them. Um, and so I think that, that, I use that as an example, not that they're alone, but they're pretty visibly getting, uh, hit this year. Um, but for all of these spaces, thinking about not simply the specific tangible health impact, but the impact of just living with these kinds of bills or policies or just discrimination, that, that may not still be in policy, but that's still taking place can have on persons. And the mental health impact that we see in all L G B T Q communities is pretty substantial and, um, should give us pause. Um, and, and, and I know that that community is not an alone, it's just a community where I have a lot of my work. So, uh, stigma is, is something to also consider as we're thinking about policy.
Speaker 5:Yeah, just, just to build, I, I agree with, um, Heather and add, and, and just to add on that, I, I think there's, there's obviously a disconnect between who our policy makers are and who our communities are often, right? And particularly those communities who have faced decades and centuries of disinvestment, disenfranchisement, the system was set up for a particular group to benefit, and we have just continued to see that perpetuate generation after generation. So I think it's important to note that like right off the bat is that, you know, there's a policy is sort of protecting its status quo in some ways. And I think we had been making some amazing strides. Um, we've been seeing at the local level, uh, in particular people of color being, um, uh, elected to sit on school boards and then making their way up to local councils and making their way up like through the state legislatures. Um, you know, and then we started to see these attacks on, um, re through redistricting, through voter suppression laws, right? And so it's all connected. And I think, um, I, I don't necessarily think that people, um, every day sort of see how these systems connect to each other, but I know that they're feeling the effects, right? Um, I think there's a, again, this sort of bias that be if you're a policy maker or if you're a lawyer, if you're a doctor, that you are an expert, let's say, let's agree like you've gone to school, you know, we all have degrees, but that doesn't necessarily make us an expert in all the particular areas or in all the ways that, you know, people have been affecting lives. Community members themselves are also experts. And I think there's a, um, this sort of notion that like, well, they're not really speaking about in a professional or in a particular way, and that we just, we really need to get over that. And I think we need to really embrace community as the experts within their communities. They know the walking paths, they know the childcare centers, they know the schools, they know the challenges as well, well as the potential solutions. And so I think our role could actually be leveraged as being maybe the translators for some of those, you know, how do we look at and really listen to community and then help to broker or negotiate or understand, um, and how to translate that into policy. And I also think that there's, um, we need to kind of invest in capacity building also for local, um, and state policy makers to understand how to facilitate meetings, how to engage with community, um, how to make sure that they can really sit and listen and hear and understand what's happening. And I think more and more there are frameworks and tools to help each other talk, just like across different sectors. So Sam, talking to your sister who's in the, who's in transportation, we speak different languages across different sectors. We need translators across different sectors. We also sometimes need translators as we're listening to community. Um, so I, I think those are some, there are some opportunities there. And I think we just really need to embrace community as experts and really make room for them at the table to help us in planning policies.
Speaker 3:Don, you had, you had mentioned, you know, the war on poverty back in the sixties, and what that was, was a health and all policies approach with community at the focus. It was really about community building. It was shifting power to the communities. And actually it got undermined because the communities got too powerful. And so<laugh>, so the, the, the conservative right wing kind of undercut it, but we have an opportunity right now, and, and that occurred in the sixties because of the people that they put into power, the through voting. We have the same opportunity now we're seeing with the, the Rescue Act investment in communities like we've not seen in a long and a huge amount of money. So this is our opportunity to actually have an impact. Similar to what happened in the sixties when we actually did reduce poverty. We induced community civic engagement, reduced health disparities. It didn't persist. Uh, and I have to add, mention the fact that when we shifted from, uh, investing in communities to investing in medical care in the eighties, that's when our disparities started to increasing. It's almost as if the more money we put into medical care, the worse our health gets and the worse our disparities get. So we really have to continue to focus back on the community.
Speaker 2:I really appreciate that. You know, we heard Andre's talk earlier about community conversations, and I was in a meeting, uh, recently where somebody said, well, we wanna, we want the community to have conversations. Who, who should do that? And I said, well, the community should. And he said, yeah, but who should lead them? And I said, the community members. Um, and he said, well, who will train them? And he said, you're going to<laugh>. It's your job is to equip the community leaders and the community experts to have these conversations. You know, your, your job is to help support the experts in the community in that process. Um, so, you know, with that in mind, I wanna ask you for the audience, what's one kind of takeaway takeaway, um, for how we can help support and promote community leadership on community identified needs and issues?
Speaker 5:I'll jump in just cuz I also have to jump off in just a few minutes. But, um, c community engagement is not just about checking a box, it's, it really, you need to have a thoughtful process and we need to understand what are the outcomes. You can't just go to community with an agenda. You have to build the community, the agenda with the community. And so that the br you know, community, going back to what is community, um, I think you, it's, if, if you can start, you can start with like local leaders, right? Folks who are influencers, um, members of churches or members of com, local community-based organizations, local service providers, those are all, many of those individuals are actually community leaders and you and can help you kind of start to translate that information. But, um, it's really essential and important to think about the process, um, to have a space where people can engage in multiple different ways because some people aren't comfortable engaging in a Zoom conversation like this. So we have to have different types of ways. Language translation and interpretation services are really, really important. Not just for individuals who don't speak, um, English as their first language, but also for those who are maybe hearing impaired or visual impaired. So just really being as sort of inclusive, right? Um, thinking about the most sort of vulnerable person who is not gonna be comfortable in all spaces. How do we plan a process? Is that is going to allow for their voices to be heard and is equally important way as ours are here today. Um, and then really important that crafting of the agenda, because the crafting of the agenda will help people sort of see what are the parameters that we're talking about today? What is the process to engage? And then where issues come up that you can't address in a five hour meeting, or even in a one or two hour meeting is having a place where those issues can go to for the next meeting and the next conversation. And the last thing I would say is follow up. You know, you can't just let the, the conversation end. You have to go back and continue to engage in that conversation because that is a way to build trust and to build relationship over time. It's not gonna happen overnight. It is a journey. Um, and so we have to be invested in one meeting. Not all the problems are gonna be solved, not even in two or three. It's gonna take years, it's gonna take time. And you really have to build those relationships and that trust over time. So those are just a couple of examples I think if people really want to engage and have a meaningful process to engage community.
Speaker 4:Yeah, and I, I talk a lot about it in interprofessional education, how we can't just throw people in a room together and expect them to be able to do the work. That there's actually some skill to that. And I think that, that one of the things building on what Sarah just said is we may need to recognize that we have some work to do on learning the skills needed to do these kind of meetings. Um, and there are folks at social work, not all of them, but the social workers who do community organizing or we've been in the community, they have a lot of those skills. There are other professions, public health workers or community health workers who've been in the field for years. Um, they also may have those skills. And so recognizing that we then need to be willing to learn some new skills if we're going to do this kind of work. Um, and oftentimes it's not the community who needs to learn the skills, it's us. Um, I would purport, um, others may disagree with me or maybe it's both, I don't know. But, but I do think that it's something that's really important for us to bring to the table is we may need to come op open to learning ways of doing this. Um, even things like when do you have your meeting? Well, if you're used to having an eight to five Monday through Friday and people are doing shift work, good luck because they may lose their job or they may not be able to feed their family this week if they come to your meeting. So there's just lots of things to learn in this and um, I'm excited to see people continuing to talk about it, um, and hope that we, we do that work.
Speaker 3:Yeah, and very briefly, I think we need to change the narrative about voting. We really need to recognize that voting is not just for politicians. It's not just for people engaged in politics, not just for the rich, not just for the white, not just for the urban. It's everybody's responsibility and that it has an impact on the, the lives of people. So we change the narrative about what creates health, what creates thriving communities, and change the narrative about what, who, who votes. It's everybody's responsibility.
Speaker 2:That's an excellent way to end this, um, particular session. Great discussion and thank you Sarah, Heather, and Ed for, for engaging in this conversation with me. And, uh, I have the honor of transitioning us into our very last question of the day. I don't wanna start by saying thank you to everyone for being here for the whole day, for participating in the various panels. It really has been just such a rich discussion. And um, and I think, you know, what I wanna pose is a question that I think all the audience will wanna know, which is, how do we turn all of this into action? How does an organization go from declaring an anti-racism policy to making an impact? And this is open to everyone who's been participating throughout the day. Any order you wanna go in, um, I'm actually gonna throw it to Sarah first cuz I know she has to leave us. I wanna make sure that she has a chance to talk. And then the rest of, uh, of the group, please be thinking about your, your response to how do we turn today's thoughts and ideas into action.
Speaker 5:Thanks Don, and thanks, um, to the American Health Law Association for having this discussion today. Um, I think to answer the, to begin to answer your question, because I will say I think it's gonna be different for every community. Um, and I think that, um, there are a couple of like immediate steps that folks can take. I think one, it's just really assessing, like, where are you on this journey? What is your relationship with community? What is your understanding of what the local needs are? Have you done your equity assessment and analysis? Do you know the history of discrimination or racism or other policies within your local community that could have contributed to what is happening today? So doing that under, under doing that homework, understanding, really getting to know the community, I think is a first step. And from there, being able to build on, you know, do you have a health and all policies task force within your local community? Are your sectors starting to talk together or do you need to kind of create a defi a a glossary or common definition of terms so that you can start to begin each other's language? Um, and then from there, I think really assessing, are we, do we have a positive rights framework or do we have a negative rights framework, right? Are we thinking about how do we make education? How do we make civic engagement? How do we make healthcare available to all? Or are we thinking these are only, you know, certain policies that apply to certain populations. So kind of thinking about that mindset and shift and going back to the conversation around narrative. Um, I think understanding what is the narrative within your community or your state and how do, what is the work that we need to do in order to get there? But I think there are already assets. Every community has positive assets. What are those positive assets that you can start and leverage in order to build on, um, understanding where you are in your journey, and then how do you really, um, identify sort of what are those next steps for you and your community in order to understand? And I will just say on the last point, again, going back to what is the data, um, and what are your laws and policies and how do you really center those laws and policies that are going to help you either dismantle some of those systems that are in place or that can help you get to a place of creating more opportunities, um, for all in your community.
Speaker 2:Thank you Sarah. A lot to unpack there. And again, you know, kind of tying together the themes we've heard today about how we really interact with Engage uplift community voices. Um, who wants to, who wants to go next? Um, this is open, open discussion here. What's one recommendation that you would have leaving here for how we can turn, turn ideas into action?
Speaker 3:I've always asked the question, you know, what's the one thing to do? Well, there's multiple, everything needs to be done. So what's the opportunity that you have? What's the opportunity? You're all in leadership positions, what you have a bully pulpit of some sort? How are you using that bully pulpit? How are you getting the message out to change the narrative? And who are you inviting in? Who are you forming partnerships with? We're, if you're, and again, again, I think it's also mal public health malpractice, if that everything we do is not building community capacity. And so how are you using your bully pulpit? What message are you giving and how are you building partnerships that'll actually build community capacity, build power in community? Mm-hmm.
Speaker 6:<affirmative>,
Speaker 7:Um, I'll hop in here. Um, for those of you who may not know, th this probably won't surprise you, but, um, I do it by challenging assumptions everywhere I go and not just other people's, my own assumptions about what is appropriate and what is professional and what is leadership and doing it regularly in order to make sure that I am being as curious as I'm asking other people to be. Um, it's my way of reminding myself moment to moment that this is just as much my work as it is anyone else's. And in doing that, it allows me sort of like Ed said to, it gives me a bully pulpit. It li gives me an opportunity to maybe introduce ideas in places they wouldn't have been if I hadn't bothered to open my mouth. And it may not always be the most, uh, politically expedient or a professionally expedient thing to do, but it's the thing I feel called to do because I'm committed to this work. And so that's how I'm choosing to show it up.
Speaker 2:Melanie, what about you? I don't wanna put you on the spot, but I know that you have some thoughts on, on this
Speaker 8:<laugh>. I always have thoughts. Um, but one, one I love what everyone has said. Um, one area where I'll take it a little bit differently is also making sure that, um, I'm not the only one in the room or that's gonna have seats at the table. So leveraging my leadership position to invite others to be inclusive of other voices, and then building the pipeline of those coming behind me so that they can also continue to carry, you know, I don't wanna say the mantle, but to continue to, to be advocates and, and voices in this space. I think, you know, we so often just think about our role, but you know, the organizations that we're sitting on, um, as professionals, you know, professional organizations and our own companies and the, like, you know, what are we doing to ensure that we're increasing the diversity within the food and drug law bar? What are we doing to ensure that we're cre creating d diverse, increasing diversity within the public health field? And how are we then leveraging those diverse perspectives in the work that we're doing? So to create a sustainable model. Um, so that's not one and done. So that's just one idea.
Speaker 2:I really like that. And you make me think about the importance of, uh, normalizing conversations and that, you know, even just having this conversation, putting these ideas out there using the words systemic racism and social determinants of health and diversity, equity and inclusion, that they're not, they're not just, you know, random words. I mean, they, they have substance, right? And they have meaning. And the only way that we're gonna get to a point where people are comfortable with them is that we keep having these conversations. Um, and sometimes we might have to make adjustments to, to have these conversations with people who are a little bit more resistant, but we've, we've gotta keep doing it. And so I think that is one thing I would say as a takeaway is if you're in that spot where you can speak to this and you, and, and it's, um, it's something you're comfortable doing, keep doing it. Um, and, and that's the only way that we're gonna start to have a more normal national conversation on how we address racism in healthcare. And who do we still have on, um, with us? Sam, are you still here?
Speaker 9:Um, I've been thinking a lot about, um, you know, everyone's comments. One of the things that we think about a lot, um, within the public health law program is how do we build capacity for people working in public health, but also working in legal settings. It's one of the reasons why I focused on those areas so much. Um, uh, and that means like, you know, thinking about how, um, and helping to, um, you know, expand the use of language that helps people to make the connections between law and health and, and law and health and equity. Um, and you know, that idea of sort of capacity building, building the capacity of people working in professional context, but also working outside of professional contexts is something, you know, I think about a lot. And I, and it is, um, I think it's an important, um, area of focus, right? Like where, um, should we be making sort of intellectual and, um, conceptual and, um, practical investments in people and in their understanding about how they, they do this work and how they engage with these ideas, right? That's how we make change. We, um, we, we, um, invite people into conversations, but we also, um, build their capacity to then start conversations elsewhere and to make changes within their institutions. Um, and so from, from our perspective, it's what we do, um, within public health practice, but you can imagine that, um, being important in lots of other sectors as we, you know, continue to have larger conversations about equity.
Speaker 2:I wanna ask, uh, my fellow organizers, Aon Ruka, drew Myra, you know, when, when we were, when we started this out and when, as we've gone through the planning process, what is it that you hoped people would take away from today?<laugh>, I see, I see the wheels spinning there. Fun<laugh>,
Speaker 10:I would say, uh, I'll hop in real quick. Uh, that what I wanted is to bring in a diverse group of people to begin to talk about these issues, um, in ways that, um, that raise the voices of community. Um, but just from different perspectives, right? And so we've had people from government, people who, uh, work within hospital systems, govern hospital systems, um, people who work for the government and just talk about the ways that, uh, racism, discrimination shows up and the things that we need to do to address it. Um, and for me, I think the last point was just to ensure that as we talked about race, that we also would bring in other issues, right? That other issues around disability, about sexual orientation and gender identity, uh, because those intersections, right? So black trans women, black disabled, are never discussed in these, um, discussions about racism or lack of access to health. And so that's why I wanted to bring in the people that we did to begin to think about it and move past where we are right now, which is just beginning to identify structural racism and systemic racism from the perspective of maybe a black man and a black woman, um, but not going beyond right to where we need to go to get true equity. So I'll stop there.
Speaker 7:Anyone else wanna add bond? I'll say that what I wanted, um, out of this was to expand the idea of what health lawyers like myself might think our role is in this work. Um, and to get us, invite us really to think past, you know, solving the stark question, to really engaging in health equity work, and that we actually do have a lot more opportunity to be of greater influence than we may take advantage of. And to learn from people who are in other disciplines or in other parts of the industry about how we might be able to do that so we're less afraid of it and, and more willing to maybe take it on. And so that was what I wanted, um, out of this was to really just introduce the idea to myself and my colleagues that we are more than, um, you know, interpreters of Stark, that we have a much bigger role that we can play if we choose to do so.
Speaker 11:I, I guess I, I, I completely agree with what Vaughn just said, and that was sort of trickling around in the back of my mind. And I also really wanted to hear what I heard today, particularly from Dean Matthews, which is calling out what we know to be true. We know that vaccine hesitancy does not equate to, uh, black people being paralyzed by tales of Tuskegee. We know that we need to face the inequities and the racism in the system today and grapple with people's challenges and limitations today. Um, and for her to label the phenomenon of white people getting access and getting vaccines in numbers outstripping the effect that this horrible, horrible virus has on them and their community. And calling it white supremacy is to me, what will empower these conversations to continue and to go into the future. Because Tiana's point, many of us in our sort of daily laboring, um, are, are so tunneled in our vision, and in fact, we don't need to be tunneled. But this day and hearing from our esteemed panelists has shown us a way in which we can open up the tunnel, open up our vision, and really have, um, an effect on change, not necessarily as leaders, because clearly we don't all have to lead, there have to be some followers as well, but in really understanding different ways of extending our experience, our learning, our connections that we all have, I go to church, I live in a community, all of those things count. And that's what we've heard today.
Speaker 2:So I'm gonna, um, offer up one last opportunity for any closing remarks, and then we're gonna, we're gonna conclude our time together. Anybody else wanna add anything? I think it's been such a, it's been<laugh>, what, what has not been said, right? I mean, we've had such a great discussion, has been really rich. We've heard that a couple of times today. And so I just wanna say thanks again, um, to everyone who's participated, thanks to a H L A for the opportunity to, to do this and to work with such, um, great. In putting this together. And I'm gonna turn it over to David, Kate to close us out.
Speaker 12:So Tahan, I wanna thank you and thank everyone. I think you said, you know what else can be said? Uh, I think a lot more can be said. I, I appreciate the amazing sharing that we engaged in today. And for me, this is another beginning point. Um, another opportunity to open the door and to embrace the comments that have been shared and see how we can amplify the voices that have been shared today and carry this message even farther. Um, to Vaughn's point, uh, those of us who are lawyers or whatever discipline you're in, that is your discipline. And from a lawyer's point of view, I think the takeaway is, as a business partner, we have a greater voice than what to do with a stark problem. I think that that amplifies your point. Um, the interdisciplinary multidisciplinary approach to bringing our voices together in this professional realm, I think will allow us to extend our collective goals beyond this convening and beyond even the next convening. Um, so, so to that non, I would say there's more to do and we're happy to be, uh, a catalyst in the voices that came around today. And we will happily take the reigns of continuing the sharing, um, on beyond today. So I want to thank you all for participating. Um, it's been rich and rewarding, uh, and I hope you all got out of it as much as I did. So I, I applaud all of you for putting this together and for spending the time with us this afternoon. Thank you.
Speaker 1:Thank you for listening. If you enjoy this episode, be sure to subscribe to a H L A speaking of health law wherever you get your podcasts. To learn more about a H L A and the educational resources available to the HUK community, visit American health law.org.