Fernando de Maio, PhD: [00:31] Thanks to the whole team for the invitation and we're thrilled to be spending a little bit of time with you this morning talking about language and narrative and concepts around health equity. I'm sure Philip shares my enthusiasm to be with you today for this work.
[00:45] This is really rooted in this document that we're sharing called Advancing Health Equity, which we published just over a year ago, I think it was October of 2021. It's probably one of the most impactful things that we have published, and certainly one of the major things that we have co-published between the AMA and the AAMC.
[01:06] For us this work means a lot and I've appreciated, Philip, our year-long commitment afterwards and ongoing commitment to talk about this guide in different venues to different groups. Because it's work that continues to evolve and continues to have a lot of currency and a lot of meaning for us.
[01:26] I also want to emphasize that we come to this with great humility, even before I share some slides I just want to frame this, that we come to this with great humility, that there are national experts on narratives and narrative change, and we are not them.
[01:37] We are social epidemiologists, we're coming from public health and sociology from our respective roles at the AMA at the AAMC, and we definitely come to this knowing that we don't have the right answers or all the right answers. Indeed, the idea, the particular idea, that we want to advance is: There is no such thing as a right answer to many of the questions that we're exploring.
[01:58] The idea is that we can all benefit from pausing to reflect on language, on the narratives that our language choices uphold and perpetuate. The idea is that we all have the capacity to grow, that we all make mistakes in this area, but we all have the capacity to grow and the opportunity to challenge our institutions, whether you're in a health system, or AAMC or the AMA, we have the obligation to challenge our systems when they are perpetuating harm through the narratives and language that they utilize.
[02:27] But coming back to this idea of the "right or wrong word," we have heard this a lot. People are hungry for that, and they want that kind of guidance. We've heard it many times: "Tell me what to say, how to say it, how to get it right, so I don't make a mistake." But it's not our place to do that, and, of course, language evolves, the context always matters.
[02:46] What won't change, though, is the power of narratives, and that's really the heart of this work. Indeed, the power of dominant narratives to uphold the status quo, and through all manner of ways, perpetuate the inequities that we see in U.S. health care, and that's really the heart of this work.
[03:03] We're going to show you some slides, give you a sense of what the document has and how it lives in the context of the AAMC Center for Health Justice and the AMA, and then hopefully have a lot of time for discussion, and hopefully make this relevant and helpful to you in your work. Great.
[03:19] We're really exploring this with around three learning objectives, which I hope will have utility for you: to understand the importance of language and narrative to achieving health and health care equity, to distinguish different components of the "narrative ecosystem"—a really important term—and how words can reflect deeper values and systems have meanings that we all carry with us, and, importantly, explore ways of challenging dominant narratives in health care.
[03:45] I think to do this—and Tan mentioned this in the in her introduction of my work—I really invite you to think about language and narratives through the concept of structural violence. Many of us came to that concept through the great work of Paul Farmer, the late Paul Farmer, popularized the concept and defined that as the political and economic arrangements that harm populations embedded in our society and causing unnecessary and avoidable suffering for marginalized groups.
[04:11] But as you might know, Farmer's conceptualization of structural violence was really rooted in the work of Johan Galtung from the 1960s who argued that structural violence is the taken for granted. It is not the crashing waves or the tsunami, it is the undercurrents that are invisible.
[04:30] He further defined structural violence as natural as the air around us, and that's the same with dominant narratives: they are as natural as the air around us. They are taken for granted, they are normalized, and they are unquestioned. We see this all the time in health care. We often hear descriptions of peoples and communities as being "vulnerable" and that carries particular meaning and health care, right?
[04:55] It places the places the vulnerability in people, in their beliefs or biology, in their in their behavior—and most often it excludes any discussion about the sources, the drivers of that vulnerability. What makes people, what makes communities vulnerable in the first place? It's often pushed aside in our utilization of the term "vulnerable."
[05:20] Or the words "minority" or "minorities," you don't have to look in our medical journal survey long before we come across an article that that uses these terms. Many find them harmful, insulting, and less-than, and it says something particularly important about the lens that we are using and that we uphold.
[05:39] Well, very importantly, we want to emphasize the idea that language and dominant narratives live in words, but they live in communication, they live in relationships, they live in symbols, and larger systems of meaning—we're going to come back to that under the idea of the narrative ecosystem.
[05:57] One way that dominant narratives show up in this amazing work by Park et al and JAMA Network Open, is that shows up in medical notes. There's a narrative that's been perpetuated, reinforced, carried on in this medical note, when the physician wrote, "she is adamant that she cannot perform any kind of exercise due to pain and will not change her diet."
de Maio (continued): [06:18] There's a narrative that's being upheld in this medical note. Her entire course has been difficult: non-adherence to clinic visits and prescribed treatment. There's frustration, but there's also a narrative that's being perpetuated. There's a... stream of amazing resources that's coming out— the Park et al paper, this paper by Sun et al and Health Affairs—that's analyzing the language that's embedded in the everyday practice of health care, and the racial inequities and other inequities that they perpetuate.
[06:48] In this study that you may have seen in Health Affairs, "Negative Patient Descriptors," that the group analyzed over 40000 medical notes in a large medical center in Chicago, and you may or may not be surprised that compared to white patients, black patients had a far greater likelihood of having at least one negative description embedded within their history and physical notes. The same with Hispanic and Latino patients, and the same with patients on Medicaid.
[07:15] Sun et al concluded that these findings raise concerns about stigmatizing language in the EHR, and its potential to exacerbate racial and ethnic health care disparities. Providers may be unable to change their language without self-awareness and training on potential biases, and that's really where our conversation is rooted: What kind of resources, what kind of conversations can we have and develop to raise the self-awareness, to raise the consciousness of what we take for granted, and for what might be possible.
Phillip Alberti, PhD: [07:50] Thank you, Fernando, and thanks to the AMA for this opportunity, and I want to echo all the things and all the humility that Fernando mentioned at the outset. Fernando started us today already thinking about the salience of language and narrative in health care settings and provider notes, and in your inter-organizational dialogue and conversations.
[08:11] I'm going to take a step back and also show the applicability of language and narrative to the broader issue in a population health and health equity in coalitions of which your organizations are a part. I'll also introduce the AMC a little bit, and the Center for Health Justice along the way.
[08:29] In 2019, our then-new president and CEO launched a Strategic Action Plan, the outgrowth of which were these 10 plans that you see before you. Many of them are explicitly focused on issues of diversity, equity, inclusion, belonging, as well as health equity and health justice. Even the ones that are not putting that work forward, it is embedded across all 10 of these plans. Next slide, please.
[08:57] Not in the least of which through another 2019 output of the AAMC, which was our own thinking and plan around eliminating racism at all levels—from not only ourselves through reflection and our own organization by becoming an antiracist equitable and inclusive organization at the AMC—working, of course, with our member organizations that are medical schools, teaching hospitals, the VA health system, and academic societies to ensure that the kinds of authentic community collaborations that are required to do this work, this anti-racist health and health care equity work, are indeed genuine and authentic.
[09:38] Of course, speaking out as we can in our national platforms, as often as possible about systemic racism and the work and the policy work that needs to be undertaken to undo that racism. Next slide, please.
[09:51] You might have noticed that one of those Strategic Action Plans was Action Plan 9, or the AAMC Center for Health Justice, which is really an effort—there's so much work across the AAMC and our incredible colleagues in equity, diversity and inclusion, that are focusing on the work of our institutions at becoming more equitable, diverse, and inclusive.
[10:13] This really focuses on our organizations within their communities, being a part of collaborations and coalitions that are seeking to improve the health of populations, whether those populations are defined geographically or socio-demographically.
[10:27] At the Center for Health Justice—next slide, please, Fernando—our mantra is that health equity is our goal, and health justice is the path, is the framework that we've decided gets us there. Before, we discussed the salience of language and narrative to health equity and health justice. I wanted to unpack each of these sentences with one further slide. Next slide.
[10:51] We've defined health equity as a state where every community has access to the basic vital conditions we all need to thrive. Medical care is one of those basic vital conditions, but there are so many others that you're all aware of: humane housing, reliable transportation, freedom from racism and discrimination, meaningful work, etc. We're trying to make it clear that in this work, medicine—leadership—is partnership, and that's one of the main the main kind of characteristics of our of our efforts.
[11:24] Even in this simple sentence—where I think we're up-ending and addressing two dominant narratives that we'll get to in a bit: Health equity work is about community. It's not that dominant narrative of individualism. Fernando said it really well: There's a reason that individuals or communities are "vulnerable." There are these community-large societal factors, the onus isn't on the individual.
[11:47] I also think we're up ending that zero-sum game. This isn't about taking opportunity and access from one community and giving it to another—this isn't Robin Hood with social justice. This is ensuring that all communities have equal access to these resources we need to thrive. That's the goal that we have set for ourselves. Next slide, please.
[12:09] Health justice is how we think we get there. The way that we operationalize health justice in the Center, is to say that we keep one foot in community wisdom and multi-sector partnership, and we'll talk a little bit about that. The other foot is in a research to policy action imperative, and that's taking the lived experience, the most important expertise of our community partners, to either inform our research question, develop our interventions, and more importantly, once we've developed solutions, to really embed those community-grounded solutions in policies at all levels: organizational, local, state, and federal.
[12:49] Then we're using both of those feet to walk towards health equity in a very explicit, anti-racist, and anti-discriminatory way, and I think that's the last animation on this slide. That really comes into play—we don't do that after the fact, let's stratify by a variable. This is really the process of being anti-racist, the partners that we seek out, the ways in which we build our work together and collaborate.
Alberti (continued): [13:14] I'm going to take just a moment to get into each of these feet in one slide and then we'll talk about the connection between health justice and language and narrative.
[13:23] I wanted to stress the point that when we talk about community wisdom and the community engagement that is required for that, what we're not talking about is Philip or the team coming up with some great ideas and then going once or twice a year to a convening community advisory board and saying, "What do you think of our great ideas? Aren't my great ideas fantastic? Can we get a universal thumbs up on my great ideas? Check the box, community engaged." That is absolutely not where our foot lives. Next slide.
[13:53] We have really adopted this model from the National Academies—you might have seen it was released in February of this year—that really centers some core principles of authentic and of meaningful community engagement. Let's check out some of those words. It is a co-equal partnership, the work is co-created in an equitable way.
[14:13] It is ongoing, it is not in service of a grant or a project or a program. There is explicitly shared governance. One of the words that we're going to focus on in my last two or three minutes is that word "trust," that it is grounded in kind of bi-directional or multi-directional trust between all parties, when all of those other core principles are realized.
[14:34] We won't talk about those four pedals, but those are kind of the the outputs and the outcomes of true meaningful, authentic community engagement. That's that first foot of community wisdom and partnership, next slide please.
[14:47] On the other foot—the only thing I'll say about the research-to-policy action. I like Fernando and the social epidemiologists. This is an incredible framework that I've loved for a long time about generations of health equity science, that go from descriptive epidemiology: "Where are the inequities? Which populations? How big are they?" To analytic epidemiology: "Why do they exist? Why are they maintained?"
[15:10] Personally, I'm done with first and second generation health equity science and scholarship. I bet all of you can speak to both the why, the who, and the what. I think what we are missing right now is that science of solutions, so in our Center for Health Justice, that's the commitment: to really prioritize community wisdom, to develop a science of solution to health inequity that's really only achievable through a law and policy agenda that can shift entire communities towards health equity with the stroke of a policy pen. Next slide.
[15:43] We apply this work across our four main portfolios of work: Trustworthiness, where we'll spend most of our time in my last three minutes, data for health equity, maternal health equity, and then that last line that "All-in for health equity." One of the ways that we tap into community wisdom and multi-sector perspective is through our multi-sector partner group, won't say any more words about them. They and we co-determined... that our fourth area of focus going forward will be environmental justice, so more on that in 2023.
[16:15] Now let's spend some time on narrative and trustworthiness and the centrality of language and narrative to trust, which is, of course at the core of community engagement in a health justice paradigm. One of the other ways that we hold ourselves accountable at the center for that community wisdom is through our Collaborative for Health Equity, which is AAMC CHARGE. It's nearing 1300 participants from across the country, only about half of which—may be a little bit more— are from an academic health center. The other 45-50% are from public health departments, local businesses, CBOs and FBOs with whom our members work. They are truly action- and policy-focused and they are our conduit to that local community wisdom across the country.
[16:58] Flashback to the February and March of 2020 and we heard a lot of experts talking about trust—we were thinking about clinical trials at the time for vaccines that weren't yet existing—and the experts that we heard—these were clinical experts, public health experts, scientific experts, no community experts, but a lot of kind of doctored experts—talking about trust in this way:
[17:24] "They're focused on the past, they're focused on Tuskegee and Henrietta Lacks and J. Marion Sims, and if only we had this magical pamphlet that had the right language and the right pictures with words that made sense to your local community, we could disseminate this propaganda across all of our communities and all of this mistrust and distrust, were just magically disappear."
[17:46] We in the Center thought that was patronizing, incorrect, offensive, and kind of wrong in all those ways, and we're hyper aware that we did not hear from community voices themselves, what it would really mean not for communities to somehow get over their mistrust or distrust, but what it would mean for organizations of power and privilege like all of yours, like all of ours, to actually demonstrate that they are worthy of that community trust.
[18:13] Here's what we did: we worked with nine CHARGE collaborators in seven different geographies across the U.S. We co-developed this entire process to do some community-engaged scholarship socially distanced, that required some innovations of IRBs and payments and all that. What we ended up doing was each of those nine CHARGE collaborators went to their local communities virtually, interviewed between three and five local community members on that topic: What would it mean for health care and public health to demonstrate that they're worthy of trust across their research mission, their clinical mission, their education mission, whatever that might be. Then that full cohort of folks: the Center team, the nine CHARGE collaborators, and all 30-plus community members developed—next slide:
[19:01] These are our... Principles of Trustworthiness Toolkit. We had 20 hours of video footage—that whole collaborative—narrowed down to an incredible 11-minute video that's available on our website—I'll drop it into the chat after.
[19:21] We extracted, collaboratively, we coded all of the video transcripts and extracted 10 Principles of Trustworthiness, and also develop action guides that multisector community partner groups of people in a place could actually develop very specific actions that demonstrate that institutions and organizations are walking the talk on these principles.
[19:47] The first principle is the one that came up the most and is by far the most relevant to this conversation about language and narrative—next slide. It is this: The community is already educated, and that's why it doesn't trust you. This is about respect and responsibility. Understanding your history and your present and your responsibility for inequities that exist, and also, again, the language that we use. All of the framing of the work over the pandemic was: Let's just educate the community.
What message is that sending to our communities, that they need to be educated by us? It very squarely locates the knowledge that we value in the academy, not outside in our communities. And it makes it seem as if there isn't the education and the knowledge that could potentially be contributory to our solutions that will address health and health care.
[20:44] When Fernando and team reached out to us in the center for this collaboration, it was an absolute immediate "Yes," given the salience of language and narrative in the health justice framework and for Community Engagement more broadly. Thank you. Fernando, over to you.
De Miao: [21:00] Thanks, Phillip. It really has been a remarkable collaboration between the two organizations and the teams. When we launched this this document in October of last year, it was coupled with releases from President Harmon on the AMA side, and Phillip wrote a parallel piece from the AAMC... exploring the idea of why words matter.
[21:24] But then the document also was very clear that this is not just about words, and this is where this narrative ecosystem comes in, and this is really, really important: This is really about narratives and the deep narratives that are embedded within US health care, embedded in society in general. The taking for granted, the baked-in assumptions about how the world works, what's possible.
[21:45] At the very lowest level, we have messages with particular words or images, we have stories that those words build, and then the narratives and deep narratives that that they perpetuate over time. Maybe the best way of emphasizing this and really bringing home this document is this one photo that I'd like to show you. I've shown it in many different audiences over time and I'd be interested in in your gut reaction to it.
[22:11] It was a well-intentioned, but hugely problematic public health campaign in 2015—so this was before COVID—from our Chicago Department of Public Health. I was driving from my office on the north side of DePaul to visit a colleague at Rush and I saw this billboard on the side of the road, relatively high up: "I am an outbreak," beside the photo of a black baby.
[22:33] I drove around the city a lot in that time period and there was no billboard with a white baby. It was only with a black baby: "I'm an outbreak." [ambulance noises] What really caught me, though, was not the billboard itself—I'm almost embarrassed to say that I probably would have driven by it, I don't know if I would have noticed it. What I noticed was the protest. What I noticed was someone writing "Beautiful" with a can of spray paint on top.
[22:57] I've shown this photo several times and Philip and I discussed it with our great colleagues Malika Fair and David Ansell on a recent show, Prioritizing Equity, which you can find on YouTube. I want to show you just a little bit of the quote from Dr Ansell, which I found so, so insightful. He talks about the normalization of deviance, we can all be shocked by this. But he pointed out that the really important thing is how many people were not shocked by this. Not only the making of it, but how many people drove by this—and this was a really heavily trafficked commuting avenue, tens of thousands of people, if not more, would have seen this within a one week period.
[23:36] David said that our normal life state is deviant. And it's so deviant that this can be produced in good faith. The dominant narrative of "outbreak" next to a black child. In many ways the most fear-based racist manifestation in the world is black being dangerous. People hardly say it anymore, but they think it. So the idea that you can juxtapose "outbreak" and a black child, that reflects our dominant narratives. The unconscious being brought to the conscious by these well-meaning people.
[24:02] This was the most important part, that the act of protest is the only thing that allow people to begin to see the deviance in this. And I think that is true. It was the "beautiful" tag that really caught my interest and caught my attention. I think I would have driven by it as did tens of thousands of people in that time. I think a lot of the work that we're doing and this document that we're sharing with you today, in many ways, is an act of protest around the language and narratives that we use in health care.
[24:33] It's split up into three parts: Part one of the document—it's relatively brief, I think around 5000 words—unpacks the CDC's... we thought, very good guidance for unbiased inclusive communication, which laid out these five principles and we'll kind of walk through some examples of that.
[24:52] Avoiding the use or being very careful about adjectives such as "vulnerable" and "high risk," because they limit the frame under which we analyze and consider possibilities. To avoid dehumanizing language, use first-person language instead—and I'll walk through an example of that in a minute. To remember there are many types of subpopulations and we perpetuate great harm in gross overgeneralizations. To avoid violent language when not necessary: "targeting," "tackle," "combating," it's ubiquitous, it's all around us. Perhaps most importantly, to avoid unintentional blaming... the almost reflex-like approach where we look at behaviors, beliefs, and biology instead of structures, history, and policies.
[25:41] Part Two was the longer part of the document: Why narratives matter. This is probably the tougher read but, we think, a really important read, where we define and unpack what we mean by dominant narratives, malignant narratives, their effect is to obscure drivers, insights, and responsibility.
[26:01] There are many narratives, as we explore in the guide, but some of them—we'll admit—are more glorified than others, because some... voices are far more valued than others in our in our country in our society. Following the work of Camara Jones, we explore particular narratives around individualism, around our ahistorical perspective of health care, around the myth of meritocracy, the myth of the zero sum game that Phillip mentioned, our limited future orientation, the myth of American exceptionalism, and the perhaps the most powerful underlying dominant narrative in the United States: that of white supremacy.
[26:38] Part three of the document is a relatively large glossary—I think over 140 key terms—that many people, most people are not taught in medical school, from "ableism" to "whiteness." And in all cases, we tried to introduce a short, accessible definition, open up—when it existed—debates around that definition, and some suggestions for further reading. But that's the also the bulk of the of the document: 140 key terms, which took a great deal of time and effort to develop.
[27:10] Very importantly, we want to frame this document, and we frame this document as following our race and approach. It's focusing on anti-racism, but never at the exclusion of examining other "-isms" of oppression, other axes of oppression. We recognize that it's important to address sexism, class oppression, homophobia, xenophobia, ableism, and all other systems that perpetuate harm and prioritize advantage for some and disadvantaged for others.
[27:38] We recognize that conversations around race, collectively, we have an opportunity and obligation to overcome these fissures and create spaces for understanding and healing. We really hope that this document is an example of approaching that.
[27:57] We've talked quite a lot, and I hope through our presentation and through the document—if you've had a chance to read it or if you read it later—you'll have a sense of what we're trying to advance in terms of challenging and disrupting dominant narratives.
[28:11] We have a little bit of time, we'd love to open up for any feedback or questions, or perhaps grounded in these examples, we can examine dominant narratives as they live in your institution. Perhaps the dominant narratives have led to an equity related harm event, or perhaps some conversation around how we could challenge and disrupt those dominant narratives and all the institutions in which we work.
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