00:00:04:16 - 00:04:05:24
Thomas LaVeist: Good afternoon, everyone. I'd like to welcome you to the Tulane University School of Public Health and Tropical Medicine. And also welcome to New Orleans for those of you that are here with us today. To both those attending it in person and those joining us virtually.
My name is Thomas LeVeist, Dean and Weatherhead Presidential Chair in Health Equity and Principal Investigator of the Partners for Advancing Health Equity or P4HE for short. Along with our esteemed colleagues at Evidence for Action, we are co-hosting the Ways of Knowing Symposia Series throughout the year 2024, with the support of the Robert Wood Johnson Foundation.
As we get started, I wanted to ground us in the work that we're here to address today. New Orleans is situated in the American Gulf South, historically and presently, the epicenter for inequities in our nation. Whether that be adverse health outcomes, inequalities in life expectancy, social service and safety-net gaps for vulnerable populations. Many of the outcomes we aim to improve in the health sciences can be found here in the Gulf South.
If we are to make our country a more equitable one, we must include and center the practices and communities subjected to the largest inequities, in part because the solutions we seek live in these communities. Often the solutions are within the communities. We are fortunate at Tulane and P4HE to work alongside these communities of innovation. New Orleans holds its own cultural wisdom, passing knowledge from generation to generation, boosting customs and traditions unlike any other place in the country.
This culture of resilience and solidarity is rooted in the history of the interactions between Indigenous Peoples that call this land Bulbancha, or the land of many tongues, who care for the land and are still at the forefront of the fight against active extractivism and whose communities often bear the brunt of climate change. Also African diaspora of which knowledge and culture are iconic to the city and still carry the weight of an inequity borne out of racism and segregation.
Also, refugees from Asia, the Middle East, Central Africa, and Arcadia, migrant workers from Central America and Mexico, as well as indentured servants from Europe and the Jewish community, all whose unique ways of knowing have contributed to building the culture of this city. We often hear about the resilience and perseverance of communities, but hear less so about the structural powers dictating the necessity for resilience and perseverance.
Resilience is often venerated in public health. That is not necessarily a bad thing. But why do some communities have to be so resilient? Over the next year, we will be seeking solutions from communities with differing experiences, customs, and knowledge to the world, from Montana to North Carolina, from Washington, D.C., to Saint Louis. This symposium series aims to address national barriers to achieving more equitable health outcomes, starting with the upstream systems that dictate best practices and research methodologies.
I want to thank all of you for joining us today and thank you for your interest in transforming these systems together. Now, I'll pass it on to one of our P4HE staff to introduce our event for today.
00:04:05:24 - 00:09:22:06
Greta Cappelmann: Thank you, Thom. And welcome, everyone, in-person and online, to the kickoff for the Ways of Knowing Symposia. This series is hosted by Evidence for Action and Partners for Advancing Health Equity, two programs of the Robert Wood Johnson Foundation. And as we're about to learn more about here, today, reflects the Foundation's priority to transform the health science knowledge system.
Many who do this work recognize that the current system of accepted scientific knowledge is too narrow in scope, valuing experimental knowledge and rigor over others. We know that knowledge, what we know and believe to be true, is derived from a variety of sources. And through this series in 2024, we seek to work with those who are already well versed in various ways of knowing to interrupt scientific practices that have been exclusionary and harmful and lift up a shared understanding of scientific rigor that is more accurate, equitable, and inclusive.
My name is Greta Cappelmann, and together with my colleague Natalie DiRocco, we will be emceeing the five different discussions during the event today to give our audience a broad understanding of the upcoming series. Before we get started, I want to go over just a couple of items with our audience in-person and online today. When we registered for this event, we all acknowledged our agreed upon community guidelines for this series written by Cleo Wade, an artist and poet from New Orleans, and with her permission, repurposed for our use during the symposia.
I wanted to take a moment to uplift just a few of her words. Number one, we view these gatherings as a way to build community. Number two, we believe in compassionate listening. And number three, we offer suggestions based on our lived wisdom and experience when it's asked for. Throughout the discussions today, we will be presenting many audience engagement prompts.
The first one, which will be up on the screen very shortly, is where does knowledge come from? And we hope you'll add your voice to this by either visiting the website slido.com and entering the code that you can see on the screen, 1676862. Or scanning the QR code that you see. Also after each conversation, we'll have a brief opportunity for the audience to engage with the speakers. In the auditorium, please raise your hand and we'll be bringing the microphone over to you and online we’ll be monitoring the chat and the Q&A to uplift your remarks. Finally, in the words of Cleo Wade, we respect the attention and awareness that others generously offer us. So if you need to take a break, use the facilities, take a stretch, grab some water, please do so.
We'll be recording this event and we'll make it publicly available and we'll send out the recording to all attendees shortly after the event concludes. We also briefly take a moment to highlight the live visual notes that Riley Branson, an artist from Ink Factory, is creating alongside our event today. Riley will be synthesizing our guests’ words into images and text to visually represent the key concepts and themes for this event.
We'll be able to take a look at their progress a little later in the program. Now to our agenda for this afternoon. We'll begin with a preview of the symposia series as a whole, followed by an in-depth conversation with the co-organizers of each topically focused convening taking place throughout 2024. These three, topically focused events were crowdsourced from a public facing survey that over 100 thought partners and colleagues, including many of you joining us here today, responded to. These three topical events are Indigenous Ways of Knowing, Transforming Community-Led Health Research, and Challenging the Norm: Redefining Rigor in Health Research. We'll learn more about each symposia as we move through our program today and more information on each co-organizer creating these symposia can be found on the Ways of Knowing website. With that, I would like to welcome the co-hosts of this event to preview the impetus for this full series.
Joining today for the first conversation is Amani Nuru-Jeter, Director of Evidence for Action and Professor of Community Health Sciences and Epidemiology at the University of California, Berkeley School of Public Health. And Thomas LaVeist, who we met just a few minutes ago, Principal investigator for Partners for Advancing Health Equity and Dean and Weatherhead Presidential Chair in Health Equity here at Tulane University School of Public Health and Tropical Medicine.
Joining us virtually to moderate this discussion is Alonzo Plough, Chief Science Officer and Vice President of Research, Evaluation, and Learning at the Robert Wood Johnson Foundation. Alonzo, are you with us? And can you hear us?
00:09:22:06 - 00:09:35:04
Alonzo Plough: I'm with you. Can you hear me?
Greta: Yes, we can.
Alonzo: And you can see me?
Greta: We can. All right. With that, I'll pass it over to you to officially kick off the ways of knowing symposia.
00:09:35:06 - 00:13:18:04
Alonzo: Well, great. Thank you, Greta. And I'm glad that I can be with you via Zoom, though I wish that I could have been there. This is just a very important and very timely, a very important time in our country to be holding this particular symposium. You know, as the old adage goes, knowledge is power.
And as Frederick Douglass told us long ago, Power concedes nothing without struggle and resistance. And I think what we are going to be talking about today and my two colleagues on the panel, we are confronting the challenge of as Thomas mentioned in his presentation and as Greta mentioned as well, that for too long we've kind of sequestered too much power in defining what we mean by health and well-being in what we can formally talk about as the health science knowledge system.
Those large institutions and funders, medical schools, public health schools, even the Robert Wood Johnson Foundation, I’d have to include us into that, NIH, all of these institutions who over time have replicated the model of knowledge that, again, has value. We're not talking about not valuing it, but it also has limitations in its exclusion of other ways of knowing that are so important for a broader understanding of health and well-being and the changes that are needed in our health and public health care system to be more responsive to community needs and to address the extreme health inequities caused by structural factors like racism across the country.
So I think as we start this conversation, I've done this presentation in a number of places where people will say, how can you be a chief science officer and against science? I say, I'm for better science, a science that is connected to community experience and voice, one that is self-critical and changes and is better able to address the problems of inequity, injustice and improve health and well-being for for all of us with a particular attention to historically marginalized populations.
So with that, as kind of a lead to what I want to be a conversation between the three of us. Let me let me just start off with this with this question. All three of us on this panel work in and are products of what we call this health science knowledge system. We understand its tendency. We understand the inclusive nature of its reward systems. And we understand that we generate knowledge often in journals that very few outside that closed system have access to or are written in ways to create the necessary dialog.
I'll start off Amani with you on this one. How would you evaluate our current health science knowledge system as you would define it from your vantage point and our ability to begin to make the kinds of changes that are necessary to refine that system and add alternative ways of knowing and value alternative ways of knowing as we address health and well-being in the country.
00:13:18:06 - 00:18:09:15
Amani Nuru-Jeter: Thank you for that question. I mean, I would say that if we want to do it, we can do it. So I think it's actually a really simple answer to a question like that. When I think about, microphone, sorry, can you all hear me? Okay, sorry. So when I think about the health science knowledge system, it reminds me of one of my favorite quotes in Ta-Nehisi Coates’s book Between the World and Me, and previously in James Baldwin's book titled On Being White and Other Lies. They talk people who think they're white. And by that, they're referring to the social construction of race. Right. Something that's really a figment of our imagination, an illusion built upon prejudicial beliefs which led to a system of social hierarchy that determined differences in life chances and opportunity structures between groups, including the opportunity to live a healthy and productive life.
In his book, Coates states, “Race is the child of racism, not the father. And naming groups has never been a matter of genealogy or physiognomy, but of hierarchy.” Let's just let that sink in for a minute. Right. So in beyond race, what we're really talking about is the pursuit of power through the denigration and oppression of social groups regarded as inferior.
And it's that same pursuit of power and oppression which resulted in what we now refer to or the foundation of what we now refer to as statistics. Right? Statistics which really started out as a way to categorize social groups, to categorize social groups, or in other words, subgroups of the bell curve, which really I would say marked the beginning of eugenics and really set the stage for social statistics for generations to come.
And so when we think about this health science knowledge system, it's really important to think about the genesis of our thinking and what's at the root of the thinking that we engage in today. I would say that even today, when we think about this kind of categorization of social groups, still scientists and funders alike think along the lines of the average value of X and Y.
Right. Which is problematic because none of us are average, groups are not a monolith. And so this kind of strategy of thinking about statistics and quantitative science as the superior way to determine what is rigorous in science is flawed from its root, really at its core. Right. In terms of how we think. And so in thinking about the health science knowledge system, I think it's important to think about those things and how we can really expand that thinking.
And so that health science knowledge system is at the root of who gets funded, what gets funded, who and what gets published, what's considered rigorous. And all of these things matter, right? In terms of promoting this field of action oriented health equity, like we like to say, at Evidence for Action. All of this matters. And so the Foundation's effort to really reimagine, I think, the health science knowledge system is really about expanding the way that we think about knowledge and understanding and really trying to consider how other types of knowing outside of what we're used to might really help us understand what's actually going on.
Why is it that communities of color and in particular Black and Indigenous communities live sicker and die sooner than others? What is at the root of that? And no matter the amount or sophistication of quantitative methods, they are never going to answer that question. They're never going to tell that story. And that's because the methods that are used, they're not going to tell that story without a vast expansion of how we know and understand the world.
Right. And so that information about how we know and understand the world has to change what information we consider valued as knowledge. And it has to consider the ways in which the roots of our field, the roots of our disciplines have really privileged certain kinds of thinking and knowing and disregarded other kinds of thinking and knowing. And so I'll just kind of stop there, I guess for now. I could go on and on.
But I think that, you know, that's one way to start is by thinking about where we came from and really what we're trying to do to move past that.
Alonzo: That's a great start, Amani. Thomas, why don't you add to that? 00:18:09:16 - 00:19:49:19
Thomas: Yeah. I've learned long ago never to go after Amani. I think is kind of where we're going is the part that I think is really important. And, you know, I'd like to say sort of at the outset, I think it's important that this conversation be about expanding the ways of knowing. It doesn't mean that what we've done to this point isn't valuable. It doesn't mean that quantitative methods are not valuable. They are valuable. There are questions, important questions, that can be answered with quantitative methods.
There are important questions that cannot be answered with quantitative methods. And I think that's the perspective I like us to come at this from. There are important questions that can be understood through qualitative ways of knowing, and there are some that cannot be known through qualitative ways of knowing. And I've always, you know, in terms of the way that I've tried to to talk about these issues with my students over the years is that both are valuable.
And if you only know quantitative methods, then you are basically like a carpenter who knows how to use only a hammer, but no other tools. That is a tool. It’s a valuable and useful tool, but it’s just one tool. And if that's the only tool you know, then everything's going to look like a nail to you.
And sometimes you don't need a hammer. But it also goes for the other side. There are qualitative methods also valuable and qualitative ways of knowing and understanding in traditional ways of understanding is also valuable, but it's also a tool that can be used when appropriate. But there are also situations where those tools can't be used. So to me, the approach should be expand the toolset that you have so that you have the toolset that allows you to address all sorts of questions that are important for understanding why it is that people of a certain racial and ethnic groups live sicker and die younger than others.
00:19:49:21 - 00:21:45:24
Alonzo: I'm going to stay with this issue around whether it's a both and problem around qualitative quantitative. Just insights, I talk to a lot of I'm invited to talk to a lot of faculty. I get invited to medical schools, generally by pediatrics and family medicine, young researchers of color who feel constrained in their career trajectory because they're mixed methods. Their qualitative research isn't valued, and their faculty mentors tell them there is no way that you are going to have a successful career here. You are not going to get these big awards that NIH gives you the, R01 subject for the audience, but I'm not assuming those all of those here know the intricacies of NIH funding and their push.
I see that so much across the country they get demoralized or they take the added burden of doing a dual career kind of thing of the research methods that are rewarded. And then the other passionate ones that involve them with community voice and other forms of research. How are we going to change this structure, the appointment tenure process, the ways that major funders fund research in order to create, Thomas, I guess you both could answer this one, that balanced approach that we need that respects both methodologies that engage community lived experience. And, as I think you pointed out, Thomas, all the important things in the ecology of health and well-being that just aren't well captured by the strong medical model and quantitative methods.
00:21:46:00 - 00:23:34:22
Thomas: So, Alonzo, this is a conversation you and I have had many times, right? To me, this is the core of why this is such an important symposium series. But you look at who's running the series, right? We have a major funder. We have someone who's been able to rise to a point where they're able to allocate resources and you have a Dean of a public health school, the first public school, by the way, the dean of a public health school.
And we have the I think, senior associate dean or vice dean of another major public health school. So you have people who have been able to, through various strategies, mostly what you've described as sort of having this dual strategy of gives giving to Caesar what Caesar wants, but also, you know, doing the community kind of work that we want to do.
But we've now gotten to the point where we're able to now direct resources. And I think this symposium is a perfect example of it. And so I think the answer to the question is you need people who have the power, who have the sensibility to understand that what we've done to this point it's not that it's not valuable.
It is valuable within this point, but it's not enough to really understand some of the most important problems, at least from my perspective, some of the most important problems. So I think it’s getting people in the positions where they can become the gatekeepers. Right. And that's the bottom line here. It's who are the people who decide who gets published, right?
Who are those gatekeepers? Who are the people that decide whether those journals are publicly available versus only available to people who have access to them through the medical library? Right. So the solution is going to be we need to change those gatekeepers or we need to enlighten those gatekeepers so that they understand that there are other ways of knowing and those other ways of knowing are valuable.
00:23:34:24 - 00:28:26:09
Amani: And I would add to that that, you know, I think that things are very different now than they were 20 or 25 years ago. I think there are a lot more people. So like when I was in grad school, right, 20 something years ago, I didn't take a class at all. There was no class offered at my university where I just learned about like race and discrimination.
It may have been brought up in different classes, but there was no one course that was focused on race, racism, and health inequities. Right? The first social epi textbook hadn't yet been published when I was in grad school. I was fortunate enough to have advisors and mentors that could really cultivate the interest that I had. But I remember and I'm not going to - I'm not going to out myself, but I remember someone telling me when I was about to graduate. Amani, you're going to have a really hard time getting funding if you keep going down this road and that person, that person said to me, I don't want to dissuade you from what you're doing. You have to stick to what you're passionate about. But I want you to understand that you're going to face challenges. Fast forward, as a junior faculty member, assistant professor, non-tenured, submitting a grant to the National Institutes of Health to study race, racism, something around like chronic racism, stress, culture-specific coping styles and biological dysregulation among Black women.
And my area of work is racism in health, particularly among Black women. And when I got my summary statement back, it said that there is a fatal flaw in this application because you need a white comparison group. And I have heard reams of stories like this from colleagues, senior, junior and even my contemporaries who have had challenges getting funding, getting funded and getting published because of this.
And the problem is that we were too ahead of the curve. And I'm not saying that to pat myself on the back. What I'm saying is that where we are now is not where we were back then. I still think that we're having trouble getting that certain kinds of research, certain kinds of questions, certain kinds of people are still having a hard time getting funded and getting published.
But I do kind of feel like we have a window of opportunity right now, and I say, let's ride this wave as far as it will take us. And I think that organizations like the Robert Wood Johnson Foundation, and universities, journals, community based organizations, we can all work together to exert pressure to demand something different, even within our institutional structures.
At Berkeley, for example, not unlike many other institutions of higher education, when we go through the merit and promotion process, it's all about how many papers have you published? And some institutions, if you're at a soft money institution, how many grants have you brought in? Well, at Berkeley, you know, we have a lot of people doing a lot of community-led and community-engaged research that weren't getting credit for the impact of their scholarship because it was not being published in the traditional journals.
When you're working with community based organizations, maybe sometimes before you write that journal article, you need to write a report for the organization. You need to go meet with community groups. You need to go do a lot of stuff that's not actually going to get you tenure because that's not the incentive structure of the university. So there was a lot of pushback and we now have like formal processes and procedures and statements about how to regard and count community engaged research in the merit and tenure process so that reviewers actually understand and faculty are not held back who want to do this kind of work.
And so I kind of feel like there's a slow burn that’s happening right now where we're starting to see incremental change. Of course it is baby steps. We're not growing in leaps and bounds, but I feel like we're well on our way. And so, yes, people like the Robert Wood Johnson Foundation, Health Affairs and all these journals that came out post George Floyd, with all of these structural racism theme issues.
Okay, let's not make that one thing. Let's not make that one issue for one year. Let's kind of keep it going. If I want to publish a paper on a topic, do I have to wait for the one time of the year that Health Affairs publishes their are social determinants of health theme journal? You know that that should be something that goes in journals all the time.
So anyway, I'm starting to ramble, but, I think, I guess my point is that we're on our way and I think we all have to be pieces of that puzzle that's going to kind of help us create that picture, that whole picture.
00:28:26:09 - 00:32:02:01
Alonzo: Not rambling at all. And I think those are both very, very salient points and. I’m going to kind of go back to the gatekeepers because we don't want... I was told the same thing by my graduate advisor a little more than 20 years ago that my career would be truncated because my ideas were not aligned and I was focused on race and racial health outcomes.
When you really couldn't even articulate it as clearly as we can now in the publications that I was doing. I think we do need to, and I’m looking at some of the chat, to figure out how we collectively and I'm really proud of RWJF, which are my my workplace, that we're trying to be a part of this solution that we are simultaneously a big funder. I mean, I don't want to take us out of the context of institutions that need to change around how we create this new way of knowing. But at least we have some alignment that we want to begin to do that work. But the gatekeepers, you know, it's complex around what drives the way we generate health knowledge.
It's financial models. Both the financial modeling of who pays for the grants. It's the financial modeling of what is paid for in the health care and public health system. That is also driven by a, I would say, a not expansively informed framework for human health and well-being. We replicate in our practice some of the same constraints that we have in our academic and research side.
I mean, I want to kind of gravitate so we can talk about the salience of this to folks who aren't in academia because the limitations and restrictions on knowledge from community and other methods that better capture and to help us to disrupt the dynamics of structural racism’s implication on health. That's not just about scholarship, that's about our fields and our practice.
So I'm going to go back to the to what needs to change, which gatekeepers do we need to change in order to, so on the side where there's an interface between our work and the people who need substantially different approaches to health and well-being than the default, if we're going to be able to close these health outcome gaps.
Which of these in your opinions, which are the critical gatekeepers or the gatekeeping functions that are getting in the way of this? And how do we change those? And I know this obviously one more thing, since I'm supposed to be moderating and not doing a speech whether it is health insurers that are part of this health science knowledge system, or whether it's on the academic side that they believe the problem is a more robust approach to DEI in their internal organizational practices.
And I say to them that that's like the 101. That's the thing you should have been doing already. That's the 101 level. But you have to be changing policies, procedures, practices, who's on your board, all of these kinds of things, if you're not going to replicate some of these problems. So I'm curious, you know, you guys are real academics now. I'm a former academic. What would you go to first on the gatekeepers so that the academy informs practice in a way that is inclusive and supportive of community voice and experience?
00:32:02:01 - 00:35:26:11
Thomas: Do you want to take that one or shall I?
Amani: I can start. You just said something about the academy informing practice and I'm just going to put this, I haven't really thought about it too much, but it popped in my head, so I'm just going to throw it out there.
Maybe practice should be informing the academy because we haven't really gotten it right. I mean, there is a place certainly for academic research and for the, you know, for all kinds of academic research, but I think that there's a lot to be learned in practice. And when we think about evidence, I think it really comes down to a question of evidence.
What is evidence? And there's information that we can learn from all walks of life, from people across different sectors. And so getting people with that expertise, with that information, right, there is academic evidence, and part of that academic evidence is quantitative, some of it is qualitative, some of it is storytelling, some of it is moving away from the academy.
I can remember a time when I was a junior faculty, well, maybe I think I was a post-doc, actually, and I was so proud of myself doing my research and going out to talk to communities about my research findings. And I remember one time going to talk to some people at the Southwest Berkeley Health Forum. And so I'm presenting my research and then an elder in the audience stopped me mid-sentence and said, “You had to do a study to figure that out? You could’ve just came and talked to me and I would have told you that and so much more.”
And so just thinking about that makes me think about who holds the knowledge and why we feel like we have to engage in certain practices in order to get the evidence that other people tell us that we need to have in order to get funded, in order to have the evidence to take action, etc. So I'm thinking about this in terms of what is evidence and how do those of us that have our own forms of evidence get in those decision making positions to get back to your question, you mentioned boards, right?
So how do how do we, the collective we, get on the right kinds of boards? How do we intersect with decision makers in education, in transportation and city planning and academic institutions and journals and funding organizations? Because if we are sprinkled throughout, there was this program, once upon a time, called the Robert Wood Johnson Health and Society Scholars Program. I was in the inaugural cohort of that program. It was a wonderful program. And when I started that program, the director at my site, which was at UCSF and U.C. Berkeley, said that her goal and that the larger goal of the program was to train enough of us so that we could then go infiltrate all of the universities around, and that we could then kind of start making change from the inside out.
So I guess that's, you know, if that makes sense, that's kind of what my answer would be, that, you know, all of us getting in the right places so that we can be part of that decision making.
00:35:26:12 - 00:38:25:15
Thomas: I think so. I think the question you're asking, Alonzo, is really about power, right?
Alonzo: Yeah.
Thomas: Who has the power and you know, who has that power and how do we get to that person? And I think as a member of the National Advisory Committee for Robert Wood Johnson Foundation’s Health and Society Scholars, I was one of the people who selected you to be in that program.
Amani: Thank you.
Thomas: That is exactly what we were trying to do, and we were quite explicit about that. When I think the fact that you've got three people from that program that's on this panel right now with Alonzo being the third, this is exactly what we were hoping to do with that program and the fact that you are currently where you are and I'm currently where I am is, I think, an example of how the program has been successful. We need to do more of that, though, and we need more people who have that sensibility that, you know, I, I say all the time quite openly, you know, what I'm trying to do is subversive. I'm trying to get people who have a certain sensibility to be able to organize their career in such a way that they are in a position of power to make these decisions.
And that's the long game, however, and that takes time. And, you know, and even when you get into positions of power, this term here that I really like, I find interesting, health science knowledge system. I usually refer to as the health science industrial complex because that's what it is. There's a lot of money involved in this and there are a lot of people who are making a profit on the basis of the existing system and who are wedded to maintaining the system as it is.
So what we need to do is disrupt the system. And I think the way to disrupt that system is to get people who have a certain sensibility in positions of power, who understand how they can wield that power in a way that we do expand the voices that are able to come through the knowledge system. So even as a dean, I can come in and I can change the criteria for tenure and promotion for the school.
And even if I succeed at that, when all is said and done after that tenure and promotion decision is made at the school level, it now goes to the provost, and the provost can override whatever we decided at the school level, right? So there's another level of power that's needed in order to be able to manage that. But that provost also is responding to a set of incentives and a power system that impacts how the provost has to think if the provost is not going too far outside of the health sciences industrial complex and the provost’s power can also be impacted.
So that's where we need to think. We need to populate the entire system with people who are thinking along these lines. And that's the long game that takes time. But we need to understand that that's what's going to have to happen and we're going to have to stick with it long enough to get enough people who are thinking this way in those positions where they can make change.
00:38:25:15 - 00:40:13:04
Alonzo: I’m going to have to lead us to the to the question and answer period. But I want to, and this has been an excellent conversation, but I want to leave us with the fact that we have, and we do this at the Foundation too, this problem of a health science knowledge system, an imbalance of power, it's like a seesaw where all the power is on the one side of these big institutions we've been talking about.
And we, you know, andI think we've started a good conversation on what it means to focus on the changes that side has to make. But there's the other side of what do we do to build the other forms of knowledge, the other ways of knowing, Indigenous ways of knowing, the community power and support to provide the missing pieces to the knowledge system.
And I'll just end with something that was, I think, transformative for us at the Robert Wood Johnson Foundation around this. You know, we were like a lot of other places looking at the sort of epidemiologically defined Black maternal mortality problem. That's how those of us trained at health sciences would talk about it. But when we went into and began to work with community partners around the issue from the experience perspective, this was immediately transformed by them into the construct of birth justice.
Well, a birth justice construct gets at the root causes and the dynamics of what it means along the lifecourse of marginalized folks to have, you know, good health outcomes. And I think as we go along in this symposium and we explore and more deeply alternative and other forms of knowledge and other ways of knowing how we can both support them as we also try to refine our systems that hold the power right now.
Excellent conversation. I've been looking at the chats. Greta are you going to moderate the Q&A?
Natalie: I am Alonzo.
00:40:13:10 - 00:42:10:10
Thomas: Can I say one thing that came out of what you just said Alonzo? This idea of birth justice, right. I think this is a good example of how when academics go into community and starting interacting and engage with community, that we learn things that really can have, I think, profound impacts on the way that we think about things.
We have to be open to hearing that and to finding ways to bring that into this knowledge system. But, you know, but it's important, however, because this knowledge system currently does have a process and a lot of that process goes back to a publication that we do publish in those important journals the concept of birth justice, because that is how it starts to permeate within the academic industry, right?
The fact that it got published in American Journal of Public Health now makes it a credible thing to talk about. And if we don't continue to utilize those existing mechanisms to sort of disseminate this information and we don't start to bring voices of the community into those journals, so to speak, right. If we don't do that, then we’ll continue to have this battle of when you come to a symposium you say something like birth justice and people don't understand what that means because we haven't educated the academicians about what those concepts from the community mean.
So it has to be a two way dialog. We have to be talking, engaging dialog with community, but we also have to take what we're learning in community and bring that back to academia to say this is valuable, this is valid, this is important, and this is what that concept that I've learned by talking to that community is about and this is how we need to think about it in academia. And then it becomes knowledge that is part of what we're doing within academia.
00:42:10:12 - 00:42:37:00
Alonzo: Exactly, this collaborative knowledge building, but putting much more value on the community side than we have traditionally put. Thomas: Exactly. Amani: And I'll just add that hopefully what we will do is when we're learning all these wonderful gems of wisdom from the community that we don't appropriate it, bring it back into the academy and publish it, but we bring them along with us and make them a coauthor on these publications, because that's really where the knowledge came from.
00:42:37:02 - 00:44:39:12
Alonzo: Absolutely. We know that we need to address the extractive nature of our history of research in communities, and I think that's certainly a problem here. Let's let's go to the Q&A. This has been a great conversation.
Natalie: Great. We're going to move to the Q&A session and we're going to start with a virtual question. If anybody in the audience has a question, feel free to raise your hand. And Omar is going to come around to the mic. Jeana, any virtual questions come in?
Jeana: Yes, the chat and the questions are quite active. I wish the audience could see all the comments and thoughts. So I have a question from Mary Ellen Potts, who says, I teach an evidence-based practice course for doctor of nursing practice students.
How does one dominant way of knowing in science knowledge development affect evidence-based practice? You want to repeat it? Sure, how does one dominant way of knowing in science knowledge development affect evidence based practice? And Mary Ellen, if you hear me, you can elaborate on your question. Maybe I'll go to the next one while they think about that.
Another question is how might quantitative and qualitative research methods, so traditional quantitative and qualitative research methods, contribute to the reproduction of population health inequities?
Amani: The reproduction of what?
Jeana: Population Health inequities.
Amani: Oh, Inequities.
00:44:39:14 - 00:45:16:10
Thomas: Can I comment on the first question? So I think I understand the question, the fact that there's one dominant way of knowing currently, I think it impacts evidence based practice because it limits what we're regarding as evidence that informs practice.
So that is the reason why we need to move beyond just the dominant, you know, modes of knowledge generation. And again, I want to stress we shouldn't abandon them. It's not like there's no value in the current dominant methods. We should use them, but we should expand beyond just what we currently do so that we do have evidence-based practice that's coming out of a broader set of knowledge that's coming from the broader community and not only from a narrow sliver of academic knowledge that's coming from quantitative research methods.
00:45:16:12 - 00:46:53:16
Amani: And I'll piggyback on that. And I think combine that maybe with a response to the second question. As I was thinking about that question, a visual popped into my head of like a graph of population health over time, right? And what we know is that population health overall has improved dramatically over the last 50, 60, 70 years.
We have learned a lot about how to improve overall population health. If we have a graph and we have let's just say we have lines representing different racial groups, for each of those lines, if we look at let's say we're looking at mortality, we're going to see drastic declines in mortality for every single group over time. What we're not going to see is a narrowing of the gap between those groups.
Right. And so what that says to me is that what we have known, this dominant way of knowing is not enough to address what we see as these very persistent, entrenched racial and Indigenous health inequities, population health inequities, I should say. And so what that says to me is that the causes of population health are not the same as the causes of health inequities.
So if we want to see something different, we have to something different. So, you know, even, I mean, qualitative research isn't new, mixed methods isn't new, but we still have to do something different with that information than what we have been doing, if we actually want to start to see a narrowing of the gap, and I'm only using the example of race, we could talk about gender, we could talk about age, we could talk about any number of social identity groups.
And we tend to see, you know, very similar patterns.
00:46:53:16 - 00:49:13:12
Natalie: Looks like we have some in person audience questions. So we'll hand the mic down for that.
Melanie: Thank you very much. My name is Melanie Tervalon. I am a physician, I’m a pediatrician. I have worked in public health. I chose not to pursue the route of academia, which is a whole other conversation to have.
And I am so pleased to see my friends here. Dr. Plough, I haven't seen you in many years. Dr. LaVeist and my dear friend Dr. Amani Nuru-Jeter. I am so overwhelmed and appreciative of this conversation. I am 72 years old and I have heard this conversation for at least 62 years, I would think. I remember my mother saying to me when the report came out about disparities from the Institute of Medicine, I went home.
I was so excited and I told my mother about it and she turned to me. My mother was born in Louisiana on a plantation. My mother said to me, That's not new news. And so this conversation is reminding me of that. What I want to ask the three of you to consider is how the academy and that institution and everything associated with it, the Robert Wood Johnson Foundation as well I'm not trying to demean anybody, please hear me clearly they are solid. Organizing in the community is without solid institutions, organizing all community organizers.
And thus there are still, what sounds to me and my experience has been, this kind of inferiority/superiority dynamic that is reinforced by the academy and persists. What thoughts do you have about how the restructuring can happen so that the academy is not benefiting from the misery of our people, not thieving from us, not taking from us what we do day by day.
I am still a community organizer and I watch this happen all the time. I'm looking for a new way, trying to figure outm it's something more than partnership. Please, I don't want to hear that. It's more than partnership. It is a redirection and changing the gaze. So I'd like to hear what you have to say about that.
00:49:13:14 - 00:52:10:24
Thomas: So the question you're asking is one of the main reasons why I went into academic administration, because I realized that and when I did that, a lot of my colleagues said, you're going over to the dark side and all that, they tried to discourage me from going into administration. But I think that what my career experience has taught me is that everything comes down to power.
That's the bottom line. Who gets to decide how the resources are distributed and to who and who gets to decide which community is the priority. That's the bottom line. And I think that that is the next level of the civil rights movement -- to move from being the person who is speaking truth to power, to becoming the person who people speak to.
And then you are the one who gets to make those decisions. And so when you get into these positions, you need to be thinking about how do I now use whatever level of power I have to try to impact communities. So things like universities are, in most communities, the largest employer, right? So we're much more than just places that generate new knowledge and impart that knowledge.
We're employing people. And so when Tulane University raised all the, we have a lot of minimum wage workers here at this university, but when we've raised everyone's wage from a minimum wage to a living wage, how many families - we’re the biggest employment in New Orleans - How many people were brought out of poverty that day? Think about that. When we moved our accounts from national banks into the local Black-owned community bank here in New Orleans, which now increased their asset base, allowing them to do more mortgages and more business loans in Black community.
How many Black families, how many communities benefited from that? So it's using all levers of power that you have within your institution. When you change your admission standards and you start looking at not just GRE scores and you start looking at the total individual and you see a dramatic increase in the diversity of your student body, now you're bringing more people into opportunities to get educated.
You're from this community. So, you know and I'm using Tulane as a specific example in this community and as a local person from here, you understand what that means. Who now can get access to an education from Tulane, which wasn't possible before. And then you create a new scholarship program that says if you have a high school diploma from anywhere in Louisiana we will give you a 35% discount on your tuition.
Now you created opportunities for people to get educated. So it's not just extracting knowledge from the community, but it's figuring out how do you use the power that you have in order to be an asset for the community using all of the levers of the institution and not just the knowledge generation and knowledge departing aspects of the institution, at least that's the way that I've tried to approach the issue that your that you're asking about.
00:52:11:01 - 00:53:04:20
Alonzo: Very important. The community power building, I’m going back to the other side of the seesaw for the community power building is essential here. I'm actually going to speak to one of the one of the comments in the chat by Sharon DeJoy, who said that the birth justice often involves community based doulas and midwives, which runs counter the medical legal complex.
That's exactly why I mentioned it, because it is new and necessary knowledge and it's disruptive of standard practice, which on the medical side, which creates possibilities for engagement with women in a way that the default system doesn't. And I think that that kind of reframing, an action-oriented reframing, from the community side isn't just knowledge to publish, but it is disruptive of practices of health care in the community that have not been incorporating other means that are more meaningful to the community.
Thank you for that comment.
00:53:04:22 - 00:53:53:02
Natalie: Amani, do you want to have the last word?
Amani: After those two? All right. I just I just want to affirm what you said because I think it's very important. I think it's a problem that has been a longstanding problem. And I don't think it's going to be fixed tomorrow. And I think we can't have just one person that's doing what he's saying, right? There has to be a critical mass of doing all of these, making all of these efforts to inject back into the community and not just take from the community.
We're not going to just do it one person at a time. So I applaud you Dean LaVeist, for what you're doing and just say that all of us have to think about how we can stand in our power wherever we are to exert that change because I don't believe that you have to be a dean to be able to do that.
00:53:53:02 - 00:54:55:09
Thomas: Exactly. No.
Amani: I think that if you are a dean, you have special abilities to do certain kinds of things. But I believe we all have the ability to do things. So let's all stand in our power and make that happen, right? So that maybe, Melanie, you won't be saying that ten years from now, 20 years from now, that we can see a different future for ourselves and for our communities.
Thomas: Really glad you added that. Because when I say power, I don't mean position. I mean, we all have power, some measure of power. And when I say power, I'm talking about using whatever power it is that you have. That's what I meant about power. So, I'm glad you pointed that out. Natalie: It's hard to wrap up this discussion because it's so thought-provoking. But that does bring us to the end of our first discussion. So thank you so much. And if everyone could join me in thanking Alonzo, Amani, and Thom for engaging in such a thought-provoking discussion with us today and for really setting the stage for the Ways of Knowing Symposia. We're really looking forward to more discussions ahead.
00:54:55:11 - 00:57:04:00
Natalie: I hope people are feeling energized to continue exploring how we collectively transform the health sciences and to expand our ways of knowing. I'm Natalie DiRocco, Evidence for Action’s Strategic Initiatives Manager. I'm delighted to be here emceeing alongside my colleague Greta Cappelmann and connecting with everyone who's joined us in person and virtually for this event. As we transition into our next conversation on Indigenous Ways of Knowing, you'll find a new engagement prompt available for your participation.
And that engagement prompt is what comes to mind when you hear Indigenous Ways of Knowing. So you can submit your response again by entering the code 16767862 or scanning the QR code. And so we're looking forward to seeing what responses you have for that. I have the privilege of introducing you to our phenomenal speakers today.
As Greta noted earlier, you can learn more about all of today's speakers on the Ways of Knowing Symposia website. I'd now like to extend a warm welcome to Dr. Melissa Walls, who will be joining Amani for upcoming discussion. Melissa will be participating virtually today as we embrace a truly hybrid event. Melissa is a Bloomberg Associate Professor of American Health in the Department of International Health at Johns Hopkins University, and she's the co-director of the Johns Hopkins University's Center for Indigenous Health.
In May, roughly 20 Indigenous health researchers will gather in Pray, Montana for an exchange about the possibilities and promise of Indigenous Ways of Knowing for transforming conventional research methodologies and methods in the health sciences. This Indigenous Ways of Knowing symposium will be led by Drs. Melissa Walls and Joseph Gone, a professor at Harvard University and the Faculty Director of Harvard University's Native American Program.
Unfortunately, Dr. Gone couldn't join us today. However, we're thrilled to welcome Dr. Walls who will be sharing their vision for the symposium. Melissa, can you see and hear us? Excellent.
Melissa: I can. Can you hear me?
Natalie: Yes, we can. Perfect. Amani, I'll turn it over to you to kick off the discussion.
00:57:04:00 - 00:59:33:15
Amani: Welcome, Dr. Walls. So nice to see you. Thanks for joining us today. Just to add a little bit more by way of introduction, Dr. Walls is Director of the Great Lakes Hub for the Johns Hopkins Center for American Indian Health and Associate Professor of American Health in the Department of International Health. Dr. Walls is an Indigenous social scientist committed to collaborative research with Indigenous communities to promote health equity. Her involvement in community based participatory research projects to date includes mental health epidemiology, culturally relevant family based substance use prevention and mental health promotion programing and evaluation, and examining the impact of stress and mental health on diabetes.
Dr. Walls’ collaborative work has received funding from the National Institutes of Health and the Public Health Agency of Canada. I also want to just take a moment to acknowledge the important work Dr. Walls has done as a co-organizer of the Indigenous Ways of Knowing Symposium, which, as Natalie said, will be held in May, as well as her leadership, along with many other Indigenous scholars in supporting our new, our meaning Evidence for Action, our new call for proposals on Indigenous-Led Solutions to Advance Health Equity.
So thank you, and again, welcome, Dr. Walls. So as Natalie mentioned, in May, again, roughly two dozen Indigenous health researchers will gather in Montana for an intimate conversation focused on indigenous ways of knowing, led by you, Dr. Walls and Dr. Joe Gone, who is Professor of Anthropology and of Global Health and Social Medicine at Harvard University, who has collaborated for nearly 30 years with American Indian and other Indigenous communities to rethink community based mental health services and to harness traditional culture and spirituality for advancing Indigenous well-being.
So let's start by just talking about the title of this event, Indigenous Ways of Knowing. Can you say a little bit or talk a little bit about what that means? What does Indigenous Ways of Knowing mean and how do you think about that within the context of the health science knowledge system? 00:59:33:15 - 01:02:41:15
Melissa: Well, first I just need to introduce myself and my traditional way. Boozhoo. Mememgwaa nindizhinikaz. Miigizi indoodem. I'm really grateful to be in this virtual space with all of you and oh my gosh, the prior panel, the energy and these chats and these Q&As that you couldn't see Amani, it's awesome. And so all of us can just sort of ground ourselves in the good company we've got.
I can feel that cool energy coming through. So, and I also want to just say everything about to share, and whatever questions you ask me, comes from reading really cool Indigenous scholars, their work, from lived experience as a mixed race person who is Anishinaabe and who is of white settler descent. And, you know, rarely are the ideas fresh and my own, but it's my synthesis of it.
So to get to your your question about what do we mean by Indigenous Ways of Knowing, there's a lot of answers I could give, but I'm going to lean on Marlene Brant Castellano, who is somebody we're privileging in some of our exercise for Montana, some of our work for Montana. She really talks about three major domains of Indigenous knowledge systems, and I saw some of them coming through in this poll that we did.
So one is traditional knowledge. And in native communities, when we use this word traditional, we mean something very specific and that often is a pre-colonial, pre-colonization way of traditions. So these knowledge systems that existed long, long time ago and that we continue to hang on to even in the face of colonization.
The other is empirical knowledge which, hey, we're talking about health sciences here. Empirical knowledge is something we all sort of think about. And in Indigenous communities, we, we gather data too. You know, it might be in a different sort of methodological format than modern Western scientific endeavors do, but we do have empirical ways of knowing.
And then the third that's often privileged is this idea of revealed knowledge, which I think is really of all of these knowledge systems, the one that is so under attack by modern expressions of ways of knowing and revealed knowledge could be things like intuition. It could be things like, What did you dream last night, Amani? What? What came to you? What vision did you have? It could be that sense of spirit that's all around us. And all of these kind of ways of getting information are transmitted often in a traditional sense through oral tradition, through holistic conceptions of knowledge and it's often very personal.
So when I share at the beginning of me answering this one question, that this is sort of my interpretation of a lot of other people's thoughts, it's me trying to say I’m imperfect in the way that I do that. So I'll pause there because I know we have lots more to talk about. 01:02:41:17 - 01:03:46:15
Amani: So just to follow up on that. So I love how you kind of talked about the ways of knowing kind of pre-colonization and so that makes me think about who owns this multitudinous, right, these multitudinous ways of knowing for the rest of us who are interested in really expanding and opening our minds and really interrogating our own methodology and thinking about how we can better understand and know the world and lived experience and how that impacts health outcomes for individuals and groups of people.
When we think about Indigenous ways of knowing, is that something that is and should be owned by Indigenous communities or is that something that we should be thinking about more broadly for those of us who are not Indigenous but want to really think more broadly about the causes of health and health inequities? 01:03:46:15 - 01:06:11:08
Melissa: Well, no easy answer to that question. So I think you alluded to this yourself in the prior panel. There is a danger in sharing these systems that have been under attack in that what we find is either we get thrown out of the system altogether and in our case we're talking about academia or Western kind of hierarchies of evidence. But worse than that is our knowledge is co-opted.
Right. And so you've talked about this with community partners, that we don't just extract their information and then take it for our own. And so there is, at least for me, fear in that. And I've seen other native scholars talk and write about this. In fact, Evelyn Steinhauer, I have a paper from her sitting right in front of me.
She wrote, “I wonder if perhaps I am doing something that I shouldn't by talking about this.” And this is a question that Joe and I think about in terms of this particular ways of knowing, these sets of gatherings, how much can we share, how much should we share? I think where we land is to decolonize all of our minds and all of our thinking and for all of us to educate ourselves about the fact that just by being in these systems, we are influenced by these colonial thought patterns, these ways of knowing we can all actively work that and not co-opt my culture.
I don't have to take Lakota culture to be able to decolonize my own mind. And so I also think that these ways of knowing that I talked about, including the revealed knowledge, I saw you sort of shift in your chair when I talked about the dream you might have had last night or this week. I don't know. I think all humans have that in them.
I'm not saying that we're all Indigenous or that we all can have all of our ceremonies or anything like that. But I do think that there's profound power in being open to listen, being open to imagining, and as you said earlier, the epistemic side of the diversity of knowledge that this world once had is not working.
It's only widening the inequities. It's only creating more problems for all of humanity. And so I think there’s enough on the line now that we know we have to try. And will we get it right? I'm not sure. But we're going to give it a shot. 01:06:11:10 - 01:07:18:14
Amani: Your response, thank you for that, is bringing up two things for me. One is this balance of really prizing those Indigenous ways of knowing so that they're not co-opted and at the same time thinking about how to balance that with educating others so that Indigenous ways of knowing are seen as valid, valid ways of knowing. Right. So I guess that's one just thought that went through my mind that maybe I'll ask you to comment on, because when we were before I gave some examples about funders and organizations, journals, those kinds of things.
And so how do we protect those ways of knowing, while also making sure that the people who are the gatekeepers for making sure that that knowledge gets out there, understands the rigor and the validity and the importance of that knowledge, of those ways of knowing so that it actually gets out there to the ether. So that's kind of one thought. Well, I'll stop there before I go on to anything else and just wonder if you have any thoughts about that.
01:07:18:16 - 01:08:58:14
Melissa: I do. I think that there's, as we heard in the earlier conversation you had, there's the slow fight or the slow game and then there is revolution. And I think that us, and when I say us, I mean these Indigenous scholars who are coming together to try to think about and talk about and be open about these things, sharing our thoughts, our perspectives.
How this might be used in a modern scientific realm is part of the slow fight. And then the revolution is again decolonizing all of our thinking so that we don't even have to ask the question or make it fit in the modern system, because the modern system wouldn't be that way anymore. And so it's all in the same vein of what we talked about earlier.
I think the uniqueness is for us, we live in a settler colonial society where the very lands that we've been dispossessed from or disconnected from, which are actually to me a key source of the healing for all of us. And one of the things that the Academy does to us as individuals, it just totally rips us apart from those connections to the land and the spirits of it.
I think that moving forward, pushing all of us to reclaim those traditions, reclaim those connections, and reclaim even research, which some Indigenous scholars talk about to be something totally revolutionary that isn't the way that we can conceive of it today, that gets rid of these hierarchies of evidence I see people talking about in the chat. That's going to take a long time, but we're trying to get there.
01:08:58:16 - 01:09:48:05
Amani: Yeah, thank you for that. So when we think about protecting that knowledge, is that why the May symposium, which want to I want us to talk a little bit more about that kind of your goals and how you see that playing out. But that symposium is a closed symposium, open only to those who are being invited, and it will be for Indigenous scholars only. This kind of protecting these kind of Indigenous ways of knowing, is that the motivation behind making that a closed symposium? 01:09:48:07 - 01:10:43:18
Melissa: Sort of. So I'll back up to say, I think when we use this word Indigenous ways of knowing, sometimes implied in that is something mystical or sacred or ceremonial and of course those might be some methodologies, but that's not what we're there to share. We are really centering Indigenous ways of knowing vis a vis the academy, Western knowledge systems, etc. etc. But within Indigenous circles ourselves, we need to feel safe to be able to say things that are maybe bold, maybe a little provocative, maybe a little scary that wouldn't be things we would want to say to challenge each other, let's put it that way.
And a space where that won't be used against us. And so I think that was our primary goal and keeping that session more closed. But of course, reporting out all of the things that we learn and the themes of our findings. So it's really creating that space for us to be bold and do exactly as you say, Amani, create a document, you know, TBD, what that thing will look like that we can share out to kind of shift the dominant paradigms, shift the dominant institutions to kind of listen to us.
01:10:43:20 - 01:12:39:13
Amani: Right. So can you share a little bit more about that symposium? Kind of what are your goals? How many participants are you expecting? Anything you can share about the kinds of topics that you would like to see discussed and kind of what's the endgame?
Melissa: Absolutely. Yeah, yeah. So our approach to the symposium has been to gather about 20 native scholars will also have RWJF and affiliated team members joining us in almost like a fishbowl style situation. We're going to have time for connection to that beautiful place in Montana we're going, which is near Bozeman, and to each other. We've done some pre-work, so we've assigned out three readings, which I'm happy to put in the chat after we're finished talking if people are interested in checking them out, by native scholars, Indigenous scholars who talk about Indigenous ways of knowing, Indigenous methodologies, how does this all fit into the research enterprise or not?
Right, because I'm seeing a lot of Audre Lorde quotes in the chat. We're having people read those three things and, reflect on three major questions. So one is, as Indigenous scholars, as we read these things, what are the dilemmas, the thorny dilemmas, the things we just feel stuck on in terms of integrating Indigenous knowledges with health research? And we're not saying that we should integrate it, but we're grappling with it.
Second, where do we see Indigenous knowledge as working in the research that we all do? So this group of scholars are Indigenous researchers. We that's what we do for our jobs, where does it work, where is it contributing? And then third, really concrete questions. What questions keep coming to us in this work that we want to work together to address and try to answer, at least initially as we gather in Montana in person.
01:12:39:15 - 01:13:05:18
Amani: That's wonderful. So, I mean, there are going to be a lot of learnings out of that conversation, which is great. Because you're a Director of a center, I assume that this is not the first event that you would have helped organize, co-organize, lead. How do you see this event as different from, say, some of the other events that you've organized through your center at Johns Hopkins?
01:13:05:20 - 01:14:08:22
Melissa: Well, okay, let's get real about this. One of the tricky things about this capitalist white supremacist thing that we're all a part of, that we're just grinding all the time, is space to just think and space to be and space to process. So the gift of being able to have the resources, number one, to entice people to take three or four days out of this grind, life, to come together, hunker down, be in community together, and think about these very difficult things, that is unique and that is really cool and I'm very excited about it.
And in fact, as we've been inviting people and getting feedback, we're hearing the exact same thing. I look forward to setting my out-of-office reply and having space for this. And you know, at some point I hope that's a model for the way we can go back to working at some point, but I haven't figured that out yet, how to change capitalism.
01:14:08:24 - 01:15:03:09
Amani: So we've talked about this a little bit before this concept, and I think I saw I saw it maybe on one of the word clouds earlier, this concept of validity. And we can think about validity in all kinds of ways, right, as scientists, as researchers, internal validity, external validity, are we able to generalize? But when I'm thinking about validity, I'm just thinking about if you look validity up in the dictionary, what will it say?
Right? Like, what is the most basic, simple way that we think about validity? When I think about that, I just think about is truth, right? Validity is truth. And so I'm just curious when you think about this event, but not just this event, really, this broader movement around really trying to push against this kind of health science knowledge system, this dominant way of thinking.
What comes to mind just when you think about this word validity and kind of what your goals are with this movement?
01:15:03:11 - 01:17:06:06
Melissa: And again, I'm going to quote Lorde who, you know, the master's tools can't be used to dismantle the system we’re in, and I'm quoting incorrectly, but it's been in the chart a few times. I think that the current methodologies in the health sciences are okay for a lot of things, as we've said earlier, and they're valid in a lot of ways.
One, when we do community based, deeply, truly relational, community engaged, participatory research with Tribal partners, these research tools sometimes make sense, right? But the validity only goes so far. Pretty soon the measures don't work correctly or pretty soon we're missing some of the ways of knowing. For example, the revealed knowledge is one that I'll always bring up.
We are missing these centuries, if not longer old teachings that give us answers. We are missing time to just reflect. We are missing time to reconnect. All of that in an Indigenous knowledge system, including in Indigenous methodologies, methodologies and orientations, would be part of a valid approach to addressing the issues that we want to address in our communities. And so it goes everywhere from the questions we're asking, the way that we're applying the the modern tools and methods, and the way we're excluding some of these very traditional methods that could increase the validity and the rigor, if to use your word, of the work we do.
So all of it to me comes together and interrogating these processes and systems is a way for us to improve validity of the work that we do day in and day out to try to make our lives better.
01:17:06:06 - 01:17:49:06
Amani: Thank you for that. I got the flag that said time was up and we have to move to Q&A. But I just want to thank you so much for sharing everything that you've shared, for enlightening us, and just being willing to really talk about an experience that I know is not a new experience in terms of, you know, what is regarded as superior and inferior when we think about methodology and research and all of that. So thank you.
I'm going to turn to Jeana, do we have any virtual questions that we'd like to open up with?
Jeana: Yes, can everybody hear me? So the first question we have here is how can Indigenous scholars explain their Indigenous epistemologies and ontologies while still preserving their standing as scholars doing rigorous research? Or does this even matter if the academy does not understand our epistemology and ontology?
01:17:49:18 - 01:19:29:24
Melissa: Well, does it matter? I mean, I guess in the grand scheme of things, my answer might be no, because if you really are grounded in those ways, I think you're going to be okay. But in the modern world where you need to pay the bills and you probably went to school for a long time and got a Ph.D. to do this work, It does involve, frankly, learning to speak multiple languages.
And I think this was alluded to in the first panel. You know, I went to school just like you, Amani. Nobody ever talked about decolonizing methodologies or Indigenous methodologies the whole time I was in graduate school. But now it is like a course in most programs that I look up and so I think we're moving in a good direction.
And there are scholars now that we can cite and that helps us. People have written this stuff down and I see people are asking for our readings. I'll share the three, but there's many, many, many others out there. So it is about learning their system in order to unfortunately speak their language so that they'll give us the money.
It's still in that game if we want to be in this system. Now, I'm not saying you have to be and I'm not sure we should be. But this is where I find myself after 20 years of, you know, I don't know where else to work at this point. I guess I'm stuck in the university. But that's what I'd say for now is unfortunately, the burden still lies on us and it is not fair and I'll share a few citations, but whoever asked that question can email me, and I'm happy to share a whole reading list to help you in your journey.
01:19:30:01 - 01:20:28:05
Amani: And just to say we need you in the university, right? The universities need thinkers like you and even though I know the, myself as a Black woman, know the challenges associated with being who you are in these institutions of higher education is itself triggering and very traumatic. So just thank you for staying there and being there. Because you're there, so many others are going to come behind you and do the same thing.
I want to turn to the audience the live audience and see if there are any questions. And if not, we can take another question from the chat. Okay. We'll go to the chat. Do you have another question?
Jeana: Yes. Should we bring Indigenous ways of knowing into reductive scientific inquiry and how can we do so with respect to the sort of fundamental Indigenous ways of knowing?
01:20:28:07 - 01:22:09:02
Melissa: Yeah, this hearkens back to me sort of citing Steinhauer, who said, "I wonder if perhaps I'm doing something I shouldn't be." I don't have the answer for that. But this is precisely what we're going to be talking about in Montana. If you know, there's two eyed seeing, there's braided approaches, there's Indigenous methodologies that still are kind of fitting within this paradigm of the whole enterprise that we talked about earlier.
Revolution would be we don't integrate at all, I think. We start all over or we in fact go back to what is old, right? We go back to those original instructions and teachings and bring them forward. How to make that happen in a modern society is not going to happen overnight, and so should we? I'm not the person answer that.
But like I said earlier, we're going to try, we're going to think about it, and we're going to honor again, this goes back to your original instructions. Are you moving with respect? Are you moving with bravery? Are you moving with wisdom? Are you moving with humility about what you can and cannot share? And are you doing this in a good way?
And that term is used a lot in Indigenous spaces. But if we are moving in that way with relationality and reciprocity in mind, I think it will be okay, at least in the teachings I've been given.
01:22:09:04 - 01:24:13:04
Amani: What you said is so important. Universities all over the country are starting anti-racism centers and anti-racism programs and trying to, you know, change themselves as institutions. And, you know, there is some question about whether or not people are doing it because they feel like they have to or whether or not people are doing it because it's the right thing to do and it's long overdue. But I guess what's going through my mind when you bring that up, is when we think about, so even at my own university, but I'm assuming that it's not, you know, that Berkeley is not the only place, and this is not to say anything negative about Berkeley, but we're an institution of higher education. We are a land grant institution. So we are living and sitting on land that doesn't belong to us. So one of the things I noticed in our own institutional anti-racism efforts is a willingness to maybe go to a certain extent, but not much farther than that.
So you brought up the word decolonizing and colonization and you know there are certain terms that people are really comfortable with. But when we start talking about decolonizing the curriculum, decolonizing our research practices, that term decolonization, in general, seems to be a trigger. And I can't speak for other institutions, but certainly at my institution. And so I'm curious what your experience is around really supporting and promoting this idea of decolonization, whether it's in research, methodology and pedagogy and curriculum, because it can't just sit in research, right?
It has to be pedagogy, if we're really trying to train the next generation of scholars that are going to come behind us, whether it's them being scholars in an academic institution or having practice careers, what are you are you seeing any kind of, I guess, conflict around this? And I'm just wondering, I guess, what that means in terms of, I'm looking back at you, Dr. Tervalon, what that means about these institutions that are solid, to use your words, and whether or not we're actually going to take the steps, all the steps we need to take to get where we're really all trying to go.
01:24:13:06 - 01:26:07:09
Melissa: Yes, lots, lots of thoughts are popping into my mind. First, Eve Tuck and Yang published this article where they warned us all that decolonization is not a metaphor. And this reminds me of the performative nature of a lot of, like, land acknowledgments, decolonization efforts, anti-racist efforts. It becomes a thing that people are saying and “oh, there we go.”
And I do think there's danger and conflict in that. The other piece of this is even an anti-racist and inclusivity types of approaches. Those aren't adequate to really think about how inequities emerge in a settler colonial society for all of us. We also have to think about decolonizing systems, and that's a whole subject in and of itself. I think people get afraid of that word and can't quite put their finger on what it means yet, although there's ways to get there.
But I would just offer up a colleague of mine, Dr. Jill Fish, speaks and writes of an anti-colonial era in academia, which is an active thing, right? And anticolonial is like anti-research in that we actively subvert, in her words, the colonial gaze. We actively work to dismantle that gaze and to move beyond it and move through it or, or turn it into something else and that we honor Indigenous ways of knowing and the experience of Indigenous and other oppressed peoples as legitimate.
We don't question them, we don't examine them. We're not trying to examine that knowledge system, we're just accepting it. And this reminds me of trust based philanthropy, all of the above. So just trust us. And sort of the thing I would say.
01:26:07:09 - 01:26:30:11
Amani: I love that. I wish we didn't have to wrap up. I want to ignore Natalie.She's over there. She's putting up a wrap up sign because now I kind of want to move to have Dr. Tervalon do a whole session just on culture humility. And I know that that's not on the agenda. So maybe we'll have to organize something else. But thank you so much. I think it's time for me to turn it back over to someone, but please join me in giving Dr. Walls a round of applause.
01:26:30:13 - 01:26:33:14
Melissa: Thank you. Miigwech.
01:26:43:14 - 01:28:31:04
Natalie: As you join us in this space, you'll notice a new engagement prompt displayed on the screen. Our upcoming discussion revolves around the transformation of community-led health research. With the prompt asking what does community mean to you? So far we have some great responses coming in, caring, sharing, understanding, belonging. Please continue to engage with us and these prompts.
I'm excited to welcome at Dr. Claire Gibbons to the stage to facilitate a dialog on transforming community-led health research. Claire is E4A’s Senior Program Officer in the Research Evaluation and Learning Department at the Robert Wood Johnson Foundation.
Joining Claire on stage are Joy Williams and Dr. Charisse Iglesias, co-organizers for the community led symposium. Joy Williams is a speaker, writer, dancer and entrepreneur. She is the founder and executive director of Hope to Thrive, a nonprofit in Winston-Salem, North Carolina. Dr. Charisse Iglesias is the training and resource director at Community Campus Partnerships for Health or CCPH. At CCPH Charrise leads teams to create, facilitate, and evaluate technical training workshops and resources for community partners, researchers, and academics.
Together in August, Joy and Charisse will lead a group of community members and advocates in Greenville, North Carolina, to engage in peer networking and heartfelt conversations about what is needed to overcome systemic barriers to developing and sustaining authentic and meaningful community research partnerships. We're thrilled to have Joy and Charisse here today to share their vision for this symposium with us. Claire, I'll hand it over to you to start off the conversation.
01:28:31:10 - 01:28:57:21
Claire: Thanks, Natalie. Thank you, Joy and Charisse for joining us. I'm thrilled that you both are here. We are going to get some a deep dive into expertise and community partnership. So really excited to jump into this conversation with you both. Why don't we start at the beginning and have both of you tell us a little bit about how you think about what is a community, how is it defined, how many people are in it, what's not a community, maybe? I would love to hear you reflect a little bit on that.
01:28:58:09 - 01:31:35:07
Charisse: Can you all hear me? Okay. Thanks for the question, Claire. But first, I just want to say how grateful I am to be here with Joy in community, in planning this community led, community centered symposium. It's very near and dear to my heart, but yeah, to get to your point.
You know, there is no one way to define or describe or even set the parameters of what a community is. And we should also be mindful that communities are not homogenous entities, right? They are free and diverse and willing to evolve based on changing cultural shifts and needs. But one way that you can characterize an individual's entry into a community is through their intersectional identities.
And when I talk about intersectional identities, I'm talking about the systems of oppression based on gender, race, you know, disability, socioeconomic status, etc., etc., and how those intersections overlap, right, and interact with each other to kind of create an equitable, affects lives, basically. But, you know, like, for example, a Black or African-American trans woman living in the U.S. will most likely have a very different experience compared to an East Asian, straight, cisgender man living in the U.S.
And the differences in those experiences are, you know, mostly informed by how our white supremacist society places value on certain identities over others. Right? So typically, the more nontraditional your identities are, the more oppression you're more likely to experience, right. But you know, not to take a deficit approach to community and the bounty of what community can look like.
Rather, you know, in our symposium I'd rather us focus on the richness of the diverse, lived experiences that we will experience with each other and the co-learning that can occur in that space if we are intentional and reflective and are ready to fully engage in those differences.
01:31:35:07 - 01:34:38:01
Joy: And I want to add, and first let me also say how excited I am to be here and thank you, Claire, for that great question and for this time. It's been a blast getting to know Charisse and I'm just talking through all the things that we want to highlight within our symposium. So to add to the response that Charisse has already just mentioned, we were talking earlier about different illustrations, and I know you also asked about how many, like what is the quantity if we were to start to really specialize, what is community?
And I think one of the approaches that I take is when we even say “the community,” many times, especially when we're speaking from academia, we're looking at a them approach. And so I would say as what we have heard earlier, that in and of itself is problematic. To go a step further without going too deep, I liken it to an analogy of looking at species, the animal kingdom.
We have a school of fish, we have a pride of lions, we have a flock of birds. We wouldn’t study fish in the same way that we study lions and we wouldn't study birds in the same way that we study either of these two. But they all deserve to be studied and valued for what they are and how they contribute to our larger ecosystem.
And I think what we're trying to hone in is to have that eye when we are doing research, whether you are coming from the community or whether you're coming from academia, to realize that where you sit may be a fish and if you want to crossover to study the lion, how would you do that if you don't have that experience and you don't even know if you could even be in that environment to be able to ask the right questions or to be able to walk the same walk.
So how do we then begin to create a set of to do's? But I think where we land is let's just start with the approach and so looking at the question of how many people are in a community, well, it depends on I don't know how many people can live in that environment. What are the other factors that determine that?
So it's more of a question where we have to examine where the question is coming from and then be able to then answer it step by step once we ask the other relevant questions before we can get to the end result. So very quickly, if I were to summarize that response of what we're saying is there is no one definition to community, it depends on who the people are and what the the set of norms are within that group of network and being able to interact with that network in the way that they live, whether it's in the water or on land or in the air.
01:34:38:01 - 01:35:00:02
Charisse: I want to be the fish for sure. That's my role in the symposium. But to piggyback on that, just like there was no one way to set parameters or define what a community is, there is no one way to conduct community led research, right? Because it's contextual. What works for the fish may not work for the lions, right? Just what Joy said.
01:35:00:04 - 01:35:45:10
Claire: That's great. I think we have a very short time, so I'm going to move us on, although I would like, maybe we'll be able to circle back to this in a little bit. But you know, the audience and registered participants, quite a few of them sent in questions about rigor, and we touched on that very, very briefly in earlier discussions.
And so why don't you all take a stab at telling us a little bit about how rigor relates to community led research and why are people asking so many questions about it online?
01:35:45:12 - 01:37:35:14
Charisse: I really appreciate that question. I know the other panels touched on it and I know Bert will touch on it a lot more. It's in your title, right, of the symposium, but I do want to touch on it a little bit. It's actually one of the main reasons why I left academia after getting my Ph.D. is when a colleague’s department chair shared that any publication that was coauthored with a community partner would be counted as half a publication in my portfolio. And for those who have engaged with community partners in any setting knows, that's nonsense, right? Yeah, because the amount of cultural humility, the amount of accountability that you have to have at the very beginning of that partnership, the amount of patience and the time to compromise and, you know, being vulnerable to each other's strengths and weaknesses, that all takes a lot just to accomplish that kind of a goal, such as a research article.
And honestly, co-authoring with my community partner on a research article, strengthen my relationship with research in general more so than other traditional you know, approaches to writing research articles. And for me, that makes the work more rigorous. You know, a very simplified version or definition of rigor is like, you know, trust, making the audience feel trust or feel confidence in your research study’s findings.
But the question to ask is for whom am I trying to build that trust for, you know, and which community or which population would benefit most from my research findings and how can I revise the research process to make it more accessible for them?
01:37:36:09 - 01:40:48:16
Joy: Yeah, I don't know what to say to someone who thinks that engaging the community is less rigorous. I think my first response is like, I'm baffled. Like because first off, what I talked about earlier about the dichotomy between the academy and the community, it already sets the divide is like the community is less than. So that already as we've already named is problematic. It then suggests that in engaging the community in some way, you have to sacrifice some type of knowledge or some type of I don't know.
We've been using the phrase way of knowing that is laborious or that you have to do something extra. And, and yeah, that also confuses me because it's first off, you are part of a community, you know, in and of itself, the, the academic, the academy is a community in and of itself. And so to then to kind of put on this, this facade or this mask, like, oh now we're going to do this community work is really disassociating yourself from who we are as humans and who we are as people and people that are rooted in relationships and are rooted in connection.
And to then to start a set of rigor that then you feel like is being sacrificed by you connecting, which we do naturally as humans, makes me think not only is it problematic, not only are we disconnected, but now we're confused as research and can not even be trusted to do what it's supposed to do, like rigor, by definition, it's saying that we're going to control all the factors so that what we say we're finding is truly what we're finding and it's connected and it's going to do what we say it's going to do. But can we really trust that if the approach is so flawed that you are not even acknowledging the humanity and the processes that we take as humans and as a species in order to experience life, like how can you be a fish and say that I don't want to be in water, but I'm going to try to do this land thing?
Like there's just so many problems with trying to pretend like we don't see our bias when we do research. And that shows up because then the research really cannot be trusted, even though we say it's rigorous, even though we say it's it's been signed off by who and what and all of this. But it's not replicable and it's not even telling the accurate story of what could be happening.
But then we say, but because it has this IRB, because it's been funded at this level, because we had doctors and Ph.Ds and dah-dah-dah is exactly what we need. And I question that.
01:40:48:21 - 01:41:14:05
Claire: Well, you know I'm just reflecting a little bit on my own experience as doctoral student also a couple of decades ago. And, you know, thinking about, we've been having this discussion about hierarchy in the earlier sessions. And I wonder if we don't need to start thinking about researchers as primarily people who serve rather than people who, I don't know what it is. Right. That if we just need to flip the script a lot on who we are as researchers and what our purpose is. 01:41:14:05 - 01:42:22:23
Joy: I'll just add one thing to that. So, I mentioned that I am the executive director of a nonprofit called Hope to Thrive. What I didn't mention, maybe I don't know, is that I founded this nonprofit back in 2018, and it's been treacherous, like trying get up and moving and it's been me doing a lot of the work. I recently became a part of a network to where I have AmeriCorps members, which has been a tremendous asset to the organization and to my life, which is why I'm able to be here.
Thank you, Lord. So that the language is very important. They do not work, they serve. And it's very important because how we talk about what they do to build capacity is very much important to how we then think of them, how they think of themselves, and how we then talk about the framework. So if we were to even start changing the language and the jargon, which you talk about a lot, the rhetoric around how we title and how we call ourselves and what we do in the community can actually be very beneficial to the approach and the language we then use with the people that we interact with.
01:42:23:00 - 01:46:41:02
Claire: I love that. And we are going to take some questions from the audience, so get ready for that. Before we do that, can you tell us a little bit about what you have planned for your symposium this summer.
Charisse: Yeah, so our symposium, very excited Transforming Community Led Health Research, is going to be an interactive and peer learning space where we will have heartfelt and reflective conversations about systemic oppression and how that can prevent, you know, meaningful and authentic community led research partnerships.
You know, we do want to emphasize this is not training space. It's not a top down, you know, academic community kind of training, one directional. This is, you know, a space to share and exchange strategies and resources. You know, just like there's no one way to define or describe or set the parameters for a community. Like I said before, there is no one way to conduct community led research. And so this space is a way for us to, as the last panelist said, to get down, you know, and just to think, to take the time, to think and to collaborate with each other.
Joy: What Charisse didn't mention is that we have a Britney Spears choreography. I shouldn’t name that now. We were joking about that... But it's not too far off because we really want the ways of knowing to be practice and how community have really lifted up and utilized different ways of knowing.
And so we thought, we'll do a cultural immersion. Where we want to kind of lift up dance culturally and some of the foods that are familiar to eastern North Carolina and kind of look at some of the pottery possibly. We haven't secured all of the elements that we want, but these are just some tidbits of what we have been planning and really hoping that even during the symposium, there's different ways that people can internalize the information.
So, yes, you have maybe audibly you can be able to process, but if you are tactic learners, we want to try to create some type of weaving or something that can be happening with your hands. And so we really hope to include all of the body, not just the mind and sorry spiritual. So that is also one of my personal ways of knowing.
So we definitely want to lift up that there is an element that is beyond human experience. And whether some people call that faith or God or the universe, there is something greater than the human experience that we also want to make sure that we incorporate into how communities know.
Charisse: Yeah, thank you for that, Joy, and that bus tour again, it reinforces I mean, it promotes that place based, you know, a methodology, way of thinking, to again reinforce that community-engaged research, community-led research is contextual, it matters where you are, who you're talking to, how you're conducting.
Claire: Thank you very much. It's going to be... I'm very excited. Yeah, why don't we take some questions? Audience in person, I'm going to give you a second. Can go with someone online?
Jeana: Absolutely. So the first question we have from online, how can we effectively navigate the dynamic nature of community-led research, which requires flexibility and involves on the fly planning with the rigid structures imposed by IRB regulations and the expectation of funding bodies that prefer a clear beginning, middle, and end.
01:46:41:04 - 01:51:08:18
Joy: I like that, Yes, just like you. Well, we kind of touched on a little bit when we said rigor. And so just to re-summarize, there has to be a redefining of rigor, and it has to also include researchers redefining their place and their title and how they interact with the community. It then will take another level of understanding from IRB boards and funders to be able to just know the dynamic nature of when you're working with the community.
Some of the things that Charisse and I talked about earlier was looking at costs. Cost can be very expensive and the timeline, the IRB is very rigid with timelines, and you kind of have to know ahead of time what the research is going to produce. And so being able to... and that's beyond the scope of community, of working with community, you're not always going to know ahead of time what's going to be produced.
It's evolving. It's the type of knowledge and information that evolves and kind of builds and snowballs. So you don’t always know the final cost. You don't always know all the milestones and when they're going to be reached. So the way that we have talked about it is that in many instances, community led, community driven, whatever you want to call that, is oftentimes out of the scope of work when it comes to IRB or when it comes to funder requirements.
So then we have to shift the paradigm. We have to shift the framework in order for it to work. And if we really want to get at some of these health challenges, we have to do that shift. Do want to add?
Charisse: Yes. Agreed. And also I want to talk a little bit about the language of IRB applications. We have all read an IRB application. It's not very accessible. Right. And if we're calling ourselves community led, but it's inaccessible to people who don't understand the academic jargon. How is it really community led, right? Community partners should be part of the research design. That means being part of the IRB. And it's also a call to action. You know, for those of us of influence with power in positions as well, to advocate at the university level to make that process more accessible so that we can push, you know, equity and science forward at the same time, right.
Joy: And just very quickly, we really have talked about including something like this within the symposium so we can even break down how researchers end up having to do research with community. So coming from the pressure of being full professor or tenure to you kind of got hired and kind of got flipped on to this somehow. And so now you're like trying to figure it out. So there's different ways that people enter. And then with the human experience, you have your own life, whether you have children or whether you're going through a broken marriage or whether you're like going through something else, sickness. And all of that affects your presence and what time and energy you have to give to the research, which actually impacts how it's done, whether we acknowledge it or not.
And so we have to go in a little bit deeper as to the problems that researchers face that put them in precarious situations to where they're not paying the community the same amount that they're paying themselves and they're calling it community led, but the community's doing the work. And we also want to kind of talk about some of the ways that people that are in that position can rethink how they name the PI and how money and funding is shared within a particular grant, even if you're under the timeline and you have one week to submit this and you're like, Hey, CBO, can you partner with me?
Like, there's a way that we're hoping to go deeper into figuring out under those constraints, how can you share the funding so that you're acknowledging the time crunch, but also the partnership and whatever else that you have to get done? So I hope the researchers will be a part of that conversation, because I think that would be very useful.
01:51:08:20 - 01:51:42:06
Claire: It goes back to some of the themes we've had earlier and Dean LaVeist was talking about the gatekeepers and the gatekeepers need to change. We can't have change unless we make change, right? Like nothing's going to be true once we start making changes. So power and gatekeepers are these recurrent themes? Anyone in the audience have a question?
01:51:42:06 - 01:55:45:16
Dr. Webb: Hello, everybody. My name is Dr. Curtis Webb. I'm from Cincinnati, trained researcher and currently work for a nonprofit consulting firm. I'm excited to be here and excited for this conversation. My question is, can you all, I’m trying to pack lot of bit into a little bit. But can you give us a preview of the types of conversations? A lot of what I heard you all talk about is relationship building with community and what's a more expansive view of the research process that doesn't end with just us writing some paperwork and things like that. And so one question oftentimes I ask in my work is what more information do we need to act? And, so like, what is a more expansive view of the research process? Looks like that access to do more than just simply write up some words.
Joy: Okay. I love it. We got we got this thing going on. This is one example that I was sharing with Charisse earlier. So I used to work for a faith-based nonprofit and I would go out into eastern North Carolina in the faith communities, and I was partnering with the health department in order to kind of do their surveys.
For those of you who are not aware, each health department in each county of the United States every 3 to 5 years, they have to redo their health assessment of the county. And that's how they figure out what priorities and stuff like that. So I was taking out to the faith, to the communities that I was in, and I met with one resident and he pushed back.
He was like, I can't fill this out. And I thinking it was because maybe it was a written form, maybe he wanted to interview or something like that. And he was like, No, they're asking the wrong questions. This is not going to get me healthy. And I just had to pause. So I think one of the ways that I think that you're trying to ask is, yes, it’s relationship building, but the ongoing process is making sure that you have those that are impacted the most a part of the process.
And I know that we say that, yes, from the beginning and we know that. But it's like, no, no, no, no, no, no, no, no. You don't know it until you do it. And once you start doing it, then we can say that you know it. So as a researcher and those that are most impacted are not a part of the process. They're not developing the questions.
And here's another illustration of that. I was diagnosed with massive enlarged fibroids, and I go to my doctor, my OBGYN, and the one solution that I'm eligible for I don't want and I cannot believe that that is the only option that I have in order for me to get some type of treatment. And so then I start doing my own research and I find that there are many Black women who are getting lots of relief through an herbal ways. And I went to my ob gyn and I said, Why is this not something that you are recommending? And can we do some research together so that it can get more publicized, so that it can become options for people who don't want to take that one option that you're only giving me.
So I think also it's you have to have the right people in the room. And the most the most set of caring eyes who can ask the right question and make it happen. The right timing. I think we all know these are the people who are going to benefit from it the most and who will also die from it the most.
So it's absolutely important that we start to measure what researchers know by what they do and not by what they write about or what they theorize about or what they said on panels to talk about. It's what is the action? And by your action, then we can say that you're an expert. Thank you, Claire. Thank you, Charisse. Anything you want to add to that?
Charisse: Yeah. Thank you, Joy Williams, everyone.
01:55:45:18 - 01:58:00:03
Claire: Can we reflect on the second part of the question about the journal article not being the end all and be all for this work?
Charisse: Sure. When I was doing my master's of public health degree at UNC Chapel Hill, I don't mind outing them for a little bit. So I also have a dance choreography degree. I have an MFA in dance choreography. And so I went from dance. No, I went from public... So anyway, public health was first. So I did my my master's in public health. And the first paper that I was asked to write, I went to the professor and I said, you know what, I feel like I can really do this in a dance.
Can I do a dance or can I write a poem about this? Cause I'm like, I did some travel and I did some studying of cultures. Like I was I was really serious. He paused, and I'm now reflecting. I'm pretty sure he was like, Is she serious? Like, I'm sure he was asking that question. Of course he said no.
And I was broken hearted and I was literally broken hearted. Like it broke my, like going through that program and going through the academy, it just broke my creative spirit, the bureaucracy, the papers, like all of that. And if we don't start to realize that our bodies are one of the most important vessels of being able to even do the research, and we can't allow the knowledge that comes from our bodies to be a part of the dissemination or a part of the research in itself.
We're missing a big part of the human experience. And how can we say that anything apart from that is rigor and best practice. So that's how I would answer that.
Charisse: So are you saying, Joy, that everyone who participates in our symposium is going to be a licensed dancer?
Joy: Yeah.
Charisse: Secret's out.
Claire: We're going to hundreds of people signing up for this.
Joy: Thank you, Claire.
Claire: Thank you so much, both of you. I'm sorry that we have to wrap up, but thank you. And thank you.
01:58:11:22 - 02:00:29:21
Greta: Thank you all so much. I'm one of the lucky folks to be on the planning calls with Joy and Charisse for this symposium coming up in August. And they bring this same amount of energy to every single planning call. So it's really a wonderful thing and a wonderful process to go through with them and see them create this.
All right. So while we're moving, we've reached the overview of our third and final topically focused symposium, slated to take place in October in Washington, DC, which will center Challenging the Norm: Redefining Rigor in Health Research. Our engagement prompt for this conversation seeks your input. How do you characterize rigor in anti-racist and anti-colonial health research? Please add your thoughts to the engagement prompt as we listen to our next speakers in discussion.
So I'm really delighted to welcome back the stage. Our moderator, Thomas LaVeist, along with the first co-organizer of this event, Dr. Tongtan “Bert” Chantarat. Bert is a senior research scientist at the Institute for Social Research and Data Innovation at the University of Minnesota. His research leverages a systems thinking framework and bridges approaches from health services research, social epidemiology, and decision science to understand and mitigate racial health inequities throughout the life course.
And joining us virtually is the second co-organizer of the symposium, Dr. Melody Goodman. Dr. Goodman is the Vice Dean for Research, Professor of Biostatistics and Director of the Center for Anti-Racism, Social Justice, and Public Health at the New York University School of Global Public Health. She is a biostatistician and research methodologist. Her research interest is identifying the origins of health inequities and developing, as necessary, evidence-based primary prevention strategies to reduce these health inequities.
Can you see and hear us, Dr. Goodman?
Dr. Goodman: Yes.
Greta: fabulous. All right, Thom, I'll turn it over to you to dive in.
02:00:29:21 - 02:03:16:21
Thom: Okay. Thank you, Greta. In October 20 to 30 scholars with a history of embedding equity into their research approach and 10 to 15 gatekeepers will convene in Washington, D.C., to facilitate a conversation about how to address barriers that hinder the application and widespread adoption of anti-racist and anti-colonial research approaches, practices, and methods in the field of health research.
We thought it was important to provide an operational definition of the terms anti-racist anti-colonial for the purposes of this symposium, because those are terms that we use often, we don't necessarily all have the same meaning for those terms. So we wanted to come up with a definition, at least for the purposes of our symposium, so that we at least are on the same page in terms of what we're talking about.
So anti-colonial research we defined as, involving a critical examination of the persisting effects of settler colonialism and racism within social systems that acknowledges the racialization of Indigenous communities due to intersectional colonial and racist structures embedded in U.S. systems, policy, and practices. This research aims to challenge and dismantle these oppressive systems. Anti-racist research we defined as conducting research using a racial equity lens, meaning that research topics center the health priorities of people or communities that have been impacted by structural racism, that problems and solutions being studied are motivated and or validated by people who are directly impacted, and that the research process engages stakeholders at appropriate stages of the project.
Moreover, racial equity refers to the conditions in which race or ethnicity no longer predicts a person's ability to live a healthy life. It requires that societies be free of systems and structures that unfairly disadvantage people of color. And we explicitly define that as Black, Latino, Latinx, Indigenous, Asian, Pacific Islander, and other racial and ethnic minorities compared to white people. So I have a few questions for the organizers and then we'll turn it over to the audience for your questions.
So first, I'd like to ask Melody the first question since she is not here with us, what makes this symposium different from other similar events? And what are you most excited about?
02:03:16:23 - 02:04:44:19
Melanie: I'm a nerd, so I'm excited about really speaking with other methodologists about how we define rigor. But I think what makes this different is we're also going to bring in some key stakeholders. So we're going to have a conversation among methodologists and people who really sort of think about rigor, but also have a conversation with people who make decisions about what gets published and what other people get to see.
Thom: Bert, your thoughts.
Bert: I think what I'm very excited about is the fact that we're are going to incorporate gatekeepers in this event because all of us have thoughts. But I think about this as like we have thoughts, we have theory, but sometimes we don't have a way forward. So you heard a lot about gatekeepers for the whole time. But I think the opportunity of bringing people together to translate what we think the way forward and have someone actually hear it and reflecting on it in front of us, then I think this is a like very unprecedented event that I think is going to lead to something.
02:04:44:21 - 02:05:52:23
Thom: Yeah. So what's your vision and goals for the symposium?
Bert: I would say I think the vision for me, I think about what will come out of it and I alluded to this earlier, I want for us to have a plan, a blueprint to move forward, not just thinking about it as if, okay, what do we do, but we don't know how to go forward. So I think that's what I think this is unique and yeah I'm looking forward to it.
Thom: Melody, did you want to respond to that?
Melody: I'm looking forward to challenging the status quo. Things have always been done a certain way and they haven't really worked in terms of really addressing health equity. And I'm excited about thinking outside of the box and challenging the status quo to see if we can come up with some ways of knowing that can really impact change and make things better for folks that have been neglected for a long time.
02:05:53:00 - 02:06:59:18
Thom: So as you point out, Melody, you're a nerd, and Bert, I think we're all nerds. If we're researchers were nerds, right. So what motivates methodologists to engage in anti-racist anti-colonial research methods and approaches?
Bert: Hmm, how do I say this? I think we all have been in this space and we all struggle with resisting how the way we were taught to do, but we don't agree with it, but we don't know how to kind of challenge it. And I think that is something that we need to think about, like kind of think about it as a group. And that's just something that I’m interested to do. And in terms of methodologists, per say, like you said, we're all nerds and we wanted to find a way to improve the way we find meanings in our experience and we’re all coming from different disciplines. And I think the opportunity, again, going back to we're coming together is truly what interdisciplinary is. And that's why we're motivated to be here. And as methodologists also.
02:06:59:18 - 02:08:36:20
Thom: So why is this important to you? What's your history, your own personal history with this work?
Bert: I have always worked in racial health equity research, but I came to this space from, so I was trained in health services, research, and policy. And I came to this space thinking about racial health inequity as the only way to fix it is like giving people better health care or something like that. But I came to this line of work because I was trained under Dr. Rachel Hardeman and the way she frames health inequity is because we live in a society where it is not fair and we in a society where it's racist, basically, and if we don't fix that, like nothing that we can do will be sustainable.
And if we think about racial health equity, so we need to change something upstream that’s making people sick, right? So, if you’re just like focusing on individual exposure, then our goal of making it equitable will probably not going to happen for a while. So So I think that's that's how I came to this space
02:08:36:20 - 02:09:13:17
Thom: And Melody, I'd be really curious to hear your answer to that question as well. What is your what is your personal history with this with this topic?
Melody: I grew up in housing projects in New York City. It was that village that got me to Harvard and it became really important to me to try to make that community healthier and other communities like it. And so I focused a lot on trying to think about questions and solve problems that other people weren't thinking about, trying to make the lives of Black and Brown and low income communities healthy spaces that typically are just systematically unhealthy.
02:09:13:19 - 02:10:06:14
Thom: And one of the things that's really, I think, unique about this symposium is that instead of having just another conversation where choir members are preaching to other choir members, there was an intentionality about bringing what we're referring to as gatekeepers, you know, to the table to participate in this dialog. Now, why is it important to facilitate a dialog with these gatekeepers?
Melody: We really want to see change. We don't just want to have a conversation. I mean, I think the conversation is important, it’s one that hasn't been had. But we want to move past the conversation to actually see things change in practice. And we think it's important that the decision makers are there in the room. The people that could affect change are there in the room.
02:10:06:16 - 02:13:07:22
Thom: One of the questions we put up for people that are joining us virtually to respond to is a question I'd be really curious to hear the way each of you respond to this question. You know, the question that I found really interesting was how do you characterize rigor in anti-racist and anti-colonial health research?
What is your what is your reaction to that question?
Bert: I would like to hear Melody first.
Melody: I think to me, rigor is a purposeful, systematic investigation that looks to address a question of interest. I'm concerned that rigor has been used to denigrate certain types of research, certain forms and ways of knowing. But for me, rigor means you're using all ways of knowing to try to get to the best answer that you can come to address that question.
Bert: Yes. So I think along the same line with her, like rigor is a way that we use to understand things around us. And I think the term rigor has been co-opted by certain type of people or certain people who generally decided what’s rigor or not rigor. And to me, this is an opportunity to challenge that, to challenge what’s rigorous. Like a lot of us who work in this space got asked all the time, like when I came to this space earlier, I recently graduated and I went through this doctoral degree recently, starting when nobody is funding us, like we're all under work, we are under funded, and then we go into this space where.
Back then, what we do is not rigorous and then now people are interested in us. They're giving us more opportunity to, maybe you are rigorous, but maybe you're rigorous, but they still challenge us. They may be open to what people say. You said what's rigorous but at the end of the day there is always someone who still think what you believe is rigorous is not rigorous per their standards.
And I think that, again, going back to the symposium, having gatekeepers there, and by gatekeeper, we include not just grant maker, but also journal, who generally editor, finally they make a decision on what to publish or not regarding of what the reviewers say. So yeah that's the rigor to me is like problematic but it is a way to bring new challenges.
02:13:07:22 - 02:14:50:02
Thom: Yeah. So what has been your experience with these gatekeepers, you know, doing the work that you do? Have you found that they've been open to looking at different ways of approaching research?
Bert: So again, like I would answer that question based on two phases that I have been through and everybody has been through this, but I feel like I'm kind of more recent in that before the unfortunate killing of George Floyd, I got questions, I got comment like, racism is not real and that's not true.
And I'm pretty well known to fight with the editor. But now we go into the phase and I'm fully soft money. So now I'm arguing with people who said that the way that you don't control for race, why? Or you don't use econometric mode, why? You cannot say impact if you don't control a certain thing.
It's not causally inference like standard things like that. So that has been my experience. But also the good thing about it is like we're moving forward because there's a lot of us who experience this and we have been given a venue to voice that and lead to change. So again, this is an opportunity like getting people together. So to change my experience and I think a lot of people have that experience and putting our heads together will fix something.
02:14:50:04 - 02:15:42:02
Thom: Yeah. So, and Melody, what about you? You've been at this for a while. What's been your experience with gatekeepers and the work that you've done?
Melody: I remember not being able to put the word racism in peer review articles, like they just would not let you say it and you could fight all you want, Bert, but you would lose. Like they just literally would not let you say it. And you know, I'm appreciative that the times have changed, but I also feel like there's a little bit of receding a little bit, going back in the other direction. And so I think this conversation is happening at a really important time because I think it would be great for the field to make some strong statements about, you know, what we think rigor is and how important this work is.
02:15:42:04 - 02:18:43:04
Thom: You know, I'm supposed to be the moderator and not like the discussant, but I did want to say one thing is I guess as a researcher from the generation before yours, you know, and when we were fighting those battles, you know, I mean my approach was, especially if you look at some of my early articles, you know, it's that while I've had a lot of, you know, methodological training and all that and know all the fancy statistical methods and everything, if you look at the early work that I did, which is when I really started talking about things like racism, which was like shocking to people that somebody's using terms like that in the eighties and nineties, you know, I would quite intentionally use the most simplistic methods possible so that you can debate whether it's, you know, in other words the most traditional well understood, you know, methods that have been around longest because I wanted people to have to say I don't trust regression.
In order to say that I don't trust these findings, you got to tell me I don't trust all this regression. Right. The most simplistic way. Well, I don't trust a chi square. And I would intentionally do that because I said, okay, you're not going to debate with me on the methods. You're going to have to just say, Well, I just don't believe that Black people are not pathological or whatever.
And I think that was my strategy. But that strategy, though, didn't challenge ways of knowing. Right. That strategy got terms like racism into the literature because at a certain point you had to acknowledge, well, the t test is a t test is a t test, and to use the traditional methods, I can't say the methods are wrong, but so while that was helpful as far as opening up the dialog about certain conversations, and I think it was what my generation needed to do to, to begin to move the needle. It didn't do what we're trying to do with this symposium, which is to say, and not only is that strategy a valid strategy, however, it is also valid to bring in other ways of understanding the way the community operates. And I think that is the thing that I find most exciting about that, that we're moving beyond just, okay, we're going to take those methods that we know everyone accepts as being traditional methods, but now we're going to look at how do we go beyond just the traditional methods.
And I want to stress, we don't want to drop the traditional methods. There's value in that as well. But I'm excited about the possibility of incorporating new knowledge and knowledges that get at the nuanced differences of these communities. Because we talk about intersectionality and all of these communities are inherently intersectional, and unless you have the ability to capture that nuance, you're missing so much of the complexity of what produces the outcomes that we see, the health disparities that we see.
02:18:43:06 - 02:19:31:14
Thom: So I want to open that up to...
Bert: Can I add one thing to clarify about our goals?
Thom: While we do that, can we go ahead and start getting those questions teed up?
Bert: And so even though Melody and I are data person, we do quantitative work, the goal of this symposium, it's not just going to be about data, it’s not just about quantitative data. We're recognizing, like what people say the whole time that we need to reach out and it's not just the data that is a gold standard. And I think this is an opportunity. People who come to this event, it's not just going to be me and Melody, the data person. It's going to be community voice, community people who have the direct experience. And so that we can kind of work together.
02:19:31:14 - 02:21:16:03
Thom: Thank you. Any questions?
Jeana: Yes, I mean, this question actually is connected to what you were just saying, Dr. LaVeist. Can the panelists offer any specific examples of research designs or, methodologies, or even evaluation that honor diverse ways of knowing?
Bert: So for me, again, like I said, that I'm a quantitative person, I don't touch people. So I think like celebrating that diverse view, diverse approach is for me, learning about other methods, learning, appreciating that my odds ratio mean nothing, technically. Like we did this research recently. People say, you can measure racism now ish, but what does it mean? I guess? And I think that's something that how you kind of diversified. I think that's from my personal experience. But there's many ways.
Melody: I would add that there's things like culturally responsive evaluation or critical race theory. And to Thom's point, you know, the paper that I had published using critical race theory, I used the logistic regression model because I wanted to say all these things about critical race theory. And I had to keep the methodology, something that was really nondebatable. I do think there are some frameworks, but I'm excited about the symposium to learn more and to collaborate with new people and maybe innovate in that space.
02:21:16:05 - 02:23:45:03
Thom: Any other questions? We got one over here. Well, we have a bigger audience online than we do here. But why don't we take that question and then get the microphone to her next? Thank you.
Jaboa: Thank you all for being here. I'm glad to be here, too. My name is Jaboa, I identify as a liberation researcher. The goal of my research is to free people in some way. And I'm also an organizer by training, and I have a deep belief that researchers need to learn from organizers and movements on how to lead with values. So when we're thinking about like rigor, I hear a lot of your values coming up in the ways that you're redefining rigor and thinking about rigor.
But my question, too, is like thinking about the values that you center in your research, the frameworks that you center in your research, beyond, you know, rigor what else do you want research to be? Do you want it to be joyful, transparent? What are the other ways we can start describing research as that really define it for what you want it to be?
Bert: So I would say I thought about this all the time when reviewing papers in that I questioned why do research, and to me research, it's not supposed to be like thought experiments or curiosity, but it has to go somewhere and I think like it's not just like we want to publish, we just we want to move forward. And I think incorporating other people, like people who have lived experience in this line of work will lead us to, to actually making change so that our research is not just something that is sitting and we can count it so that we get tenure.
Thom: Did you want to respond to that Melody?
Melody: For me, I would say it's about solutions like trying to find answers to real world problems that communities are currently dealing with in the context that they're dealing with them in and trying to develop sustainable solutions that last beyond whatever the research enterprise is.
02:23:45:05 - 02:27:58:20
Thom: Ask the question over here.
Participant: Thank you very much, because you are touching upon the question that I'm going to ask that I'm going to share a little bit my experience working as a researcher and borderline health care provider in Louisiana. I'm a medical genetics specialist at Tulane Cancer Center. When I pursued this that I thought that, wow, now we have new technology that we can help detecting cancer earlier, telling people who are at a higher risk to take preventative measures. Right now, my largest patient population is in gynecological cancer center and I'm still seeing unproportionately African-American woman being diagnosed with cervical cancer.
We have HPV vaccine since 2006. Right now, the Louisiana HPV vaccine rate, I think it’s still under 40%. That's the latest data from 2016. And then the national target, it's 80%. And second, so that's the first example of we already have an answer to that question. For whatever reason, that implementation was not completed. Second, I started seeing more endometrial cancer patient as well, that cancer out of all the cancers happens to have a genetic marker that we can see if certain individual are at higher risk for cancer or not.
However, as I continue working with gynecological doctors in the clinic or just sitting next to a gyn in clinic, someone also told me that no unofficial data, but they see more overweight African-American women get diagnosed with endometrial cancer early. So obesity becomes this, I guess obesity has been confirmed as a biomarker for higher cancer risks in other cancers.
But in this case in Louisiana, it was also our parent. And what we're seeing in clinic and in that it's also something people always like to address. I think that's just obesity is just such a risk factor for all the other chronic disease as well. But then, however, I often find the path to health equity specifically in the US, slightly bleak as an immigrant and international student lived here for ten years, first U.S. is such a capitalist country.
All the insurance companies, all the product that has been made, it's almost like you're trying to make people unhealthy intentionally. If I go back to the obesity part, I love food and recently I've learned the when the US start developing organic chemistry to develop all the food flavoring, it's because they want to use more sugar, well, sugar, obesity, diabetes, here comes it comes to a full circle.
And now I'm seeing more cancer patients, obese cancer patients and they just being at a higher risk for cancer that maybe they were not aware of it yet. And second, and the second realities are we don't have universal health care. And then in a part of me, I do like working with Medicare and Medicaid for my current position, they reimburse all the tests I'm ordering.
Perfect. But then it also comes to people who are not currently being covered. And it also comes to this mentality. If U.S. is such a capitalist country, which I would have to say being a part of it, it does kind of make me more motivated. And then I personally do believe that it might be a very efficient system for any economy that's developing.
But for a nation like the U.S.. Well, I don't see that. I just I have so many smart people. Like I'm just going want to ask you, how do you see the solution would be in such a complex system that's so interconnected?
02:27:58:22 - 02:29:26:23
Thom: Well, sorry, Bert, but that's your question.
Bert: So. So you ask a million questions that I am not an arbiter of what the solution would be. And I think it's complex. Like you recognize a lot like you. What I'm thinking when you said about, what you described is how our society is, like we live in a racist world, that the system that we think is amazing is actually designed to push us down and we just need to fix that. But the solution is much, much more complex than one person can answer. I think we just have to put our heads together.
Thom: I don't know, Melody, if you want to respond to that or you have any closing, any parting words.
Melody: I would say to her comment. You know, sort of two things. One, in this country, I think we are sick care, not health care. And we need to think about the sort of model that we use. And then in terms of research, we fund a lot of basic science, which is why we have the medications we have, but we don't find a lot of research about how to get people to take these things. And so we may want to think about that model as well.
Thom: Okay, well, thank you.
02:29:31:23 - 02:29:58:13
Natalie: Before we move to our closing remarks, we have one final engagement prompt for you all today. We'll see it in just a moment. And it is what actions do you think we, the collective we as coconspirators, should work towards based what you heard today? We'd really like you to take the next few minutes to think deeply and meaningfully about this prompt and let us know your thoughts.
02:29:58:13 - 02:37:03:11
Erin: Welcome back. Thank you to everyone who's been here, who stayed with us the whole day. Thank you to our online participants. I'm Erin Hagan. I'm the deputy director for Evidence for Action. I'm joined by Omar, my colleague at Partners for Advancing Health Equity. And so we want to just do a couple of things to wrap us up.
We want to sort of synthesize our day with you today and then hopefully leave you all with a clearer picture of what we're expecting to achieve together over the coming year. I guess it really will be. And so I want to take us back just for a second to the opening quote and just sort of reread that to you.
And again, this quote comes from the book Rooted and the title of the book as a whole is Rooted: Life at the Crossroads of Science, Nature, and Spirit. And I feel like it's such a good sort of metaphor for what we're trying to do together here.
So it says “The real issue is that too often science is accepted as the sole arbiter of validity. And as Wade Davis wrote in the Wayfinder, science is only one way of knowing, and its purpose is not to generate absolute truth, but rather to inspire better and better ways of thinking about phenomena.” And so I want to just build off of that to take a moment to talk about why Evidence for Action is interested in doing this work together.
So the name of our program is not Science for Action, it is Evidence for Action. And I think sometimes you may assume that or people may assume that science and evidence are synonymous. But I would argue that evidence is more synonymous with knowledge, and that means that evidence comes from and is generated by multiple sources like knowledge. And so the strongest evidence is really an interweaving of the sources from which knowledge is derived.
And those are the places that we saw earlier today on the screen, the words that people were sharing with us about what knowledge means to them. So that means things like wisdom and experience and our ancestors and science. And so if our mandate at Evidence for Action is to support evidence that can elicit action, then it is our responsibility to make sure that that evidence is comprehensive and representative and that it is comprised of the full breadth of ways in which people know and understand their world.
And I think that the ideas we've been talking about today have really resonated with people. But I'm not totally sure that people understand exactly what we're doing, like, why are we doing this and what is supposed to come out of it? And it's sort of like big, heady conversations about ideas that people can get excited about, but, like, what are we actually doing?
And so, you know, I come from an advocacy background. And so I think about this work more like the way we do organizing. And so that means that you get together people to develop a shared agenda and we're bringing together the events themselves, especially the next three topically focused events, are really about bringing together the base, meaning people who have been doing this and who are really, you know, on the ground doing the work.
And together the base will decide what are the important priorities that we want to push for, that we want to then advocate for. And so then that means that the audience, those are the participants, right? And then the audience becomes the people who, as we talked about in the last conversation, are the gatekeepers. So we bring together the base in those in person, intimate gatherings, and we decide on our priorities together, and then we collectively push and advocate against the systems that have been entrenched.
And so it's really, you know, the events are not about identifying best practices. You know, we sort of already know what the best practices are. And despite knowing that, we're not practicing them and sometimes there actually are organizations that have real intention to be practicing them and it's still not happening. And we want to know why. Why is it not happening?
Like what? What are the barriers, like the logistical or technical or process barriers that are preventing us from doing this? And again, sort of when you have the best intentions. So you and I were having this conversation earlier today that was not even really, it was about a total other thing that we've been working on at Evidence for Action, but afterwards,
And you said when we were talking like, it's sort of a tangent, but after we were done, I was like, actually, it's a perfect example of what we're trying to do. So we were talking about the fact that Evidence for Action just closed an Indigenous led solutions call for proposals and it was very purposefully about eliciting applications from Indigenous peoples to do research that could benefit their communities.
And the intent was that those Indigenous communities come from anywhere in what is currently the United States or its territories. And we have people who are reaching out to us from Guam, from the territory, saying, I cannot access your system, I cannot submit an application because I can't access the system and I can't access the system because it's behind a firewall that requires me to have a VPN and I can't afford a VPN.
And when we first, and RWJF is putting $4 million into this solicitation. So there's clearly an intent to support this work. Right. And when we first reached out internally to say, you know, that system is not allowing applications. And the first response was, well, we can't help people outside the United States.
And we said these people are in the United States technically. And so we got this really like lovely email from a person who very kindly explained to us that the system that was preventing them from from applying was really such a stark example of what it means to have systemic barriers to do this work, the systemic preventive barriers to achieving equity.
And so, you know, I want to also have you reflect on that conversation, too, because I think it was such an aha moment for me about, yeah, this is what we're trying to do through these symposia, is to identify those things, whether they're like small technical issues or bigger processes or sort of entrenched mindsets, like what are the barriers that are preventing us from doing this work that only the people who are trying to do it can tell us? Because maybe we have great intentions to do the work, but it's still not happening because we're blind to the ways in which the barriers are entrenched.
02:37:03:13 - 02:43:30:18
Omar: And thank you. And I like the idea also that, you know, the way that all of this is being constructed and put together is in itself a way of knowing, right where we're in some ways trying to embody some of this work as we're thinking about it, but also as it’s being put together and hopefully, you know, set as a way of conducting things if it's valuable. I was trained as a historian, so I also appreciate it. The idea of being able to learn about how, you know, all these systems that seemed to impede equity came together. You know, there's a reason why they exist and they come from the place.
But also to think about, you know, that happened there was a generation like Dean LaVeist was talking about that did this work to, you know, start those conversations that now it's being followed and now we're at at a different stage. And as everyone was talking, I was thinking about wow, you know, what were the things that kind of set the stage for what's happening now?
But also to think about how this eventually is going to become a historical moment as we put our minds together and put all of this in practice. So that's a part of the takeaway that I've had, but also the idea of what conversations are coming about between the people where, you know, either thinking about these things as we put this together and, you know, the idea of we're talking about anticolonial research and how even, you know, there are these impediments that point to the inequities that people suffer in the territories which are colonies and still suffer from it.
And in so many ways, you know, we need to take into consideration and often times are not. That's food for thought for us to also think about being inclusive in those ways.
Erin: Yeah, you know Melissa said something in her comments that I think for me is like a real point that I'm taking away from this, which is asking us to be open to imagining. And so throughout the day today, people talked about both a slow burn and also revolution. And so I think about a slow burn like chipping away at the existing system. And then I think about revolution like blow up the system and start again. And people ask, and I think you need both. Like again, from an organizing background, you have to do many things and people a lot of time, because the idea for this Ways of Knowing sort of symposium, like the first little tiny seed sort of came out of conversations we were having at Evidence for Action. And so a lot of people ask me like, what do you imagine this is going to be? And I, I have to say exactly what you said earlier, like the process by which we're doing this, that's what's so important because we are reimagining in community with each other. And so when people ask me, like, what do you imagine?
I literally cannot tell you because I cannot on my own imagine it. The way by which we are going about this work is in stark contrast to the way that these systems were created before where a few select people in power defined what they would look like. Inherently, we have to collectively in community define what a new system will look like. And so I cannot give you an image. I can only do that in community with the people who are participating and co-leading this work with us. And so on that note, I want to invite people to join us in this community and to move together with what one of the co-organizers said, with respect and bravery and humility in this space together.
There will be other opportunities for people to continue to give input and stay connected and participate. And we’ll send out a recording and have ways to capture this and future conversations.
Omar: Thank you. Yeah. And to add to that that we at P4HE, Partners for Advancing Health Equity, have a vested interest in all of what's going to out of all these different activities because part of our work is also to provide programming and resources that are actionable and we value all other different ways of knowing and understanding.
None of what we do is actually going to have the impact that it needs to have if it doesn't take that into consideration. So we thank you all. We thank you for everyone for sharing their thoughts, their questions, and we thank everyone who's in the audience here in person or are in the in the audience virtually.
We want to thank all of the speakers, thank you for being here and sharing your wisdom and knowledge. And very importantly, we want to thank all of the staff that's made this magic happen. Let's give them a hand. And I mention them by name: Natalie, Steph, Jeana, Elissa, Krystin, Greta, Mikayla and all the P4HE team that one way or another contributed to putting all this together.
Thanks to everyone. Please join us for a reception that's going to come that's right outside of this hall and continue those conversations, meet new friends, and make new conversations. That's that's what we're here for. So thank you so much.