What are the important considerations that researchers should take when they work with underrepresented communities?
In this episode, Under the Cortex hosts Patricia Rodriguez Espinosa and Luz Garcini in follow up to their thought-provoking appearance in APS’s Science for Society Webinar, “Helping Underrepresented Populations Through Community-Oriented Research.” Dr. Rodriguez Espinosa, PhD., MPH, is a native of Habana, Cuba, and a clinical psychologist by training. She is an Assistant Professor in the Department of Epidemiology and Population Health and also serves as the Associate Director of Research for the Office of Community Engagement at Stanford Medicine. The goal of her research is to decrease health inequities among racial/ethnic minority populations, particularly Latinx and immigrant communities, through transdisciplinary and community-engaged scholarship. Dr. Luz Garcini is the Interim Director of the Center for Community and Public Health at the Kinder Institute for Urban Research, an Assistant Professor in the Department of Psychological Sciences, and a faculty scholar at the Baker Institute for Public Policy at Rice University. Her research focuses on identifying, understanding, and addressing the health needs of historically marginalized communities from a community-engaged approach.
As experts in the field, Espinosa and Garcini share their ideas and best practices about how to center community voices in psychological research. The conversation with Özge G. Fischer-Baum highlights why such efforts are important for meaningful research with marginalized groups. Conducting research in a manner that involves the community and provides direct avenues for them to be empowered through new knowledge or addressing their needs allows research to have a more bi-directional benefit.
u[00:00:13.010] – APS’s Özge G. Fischer Baum
For the community, with the community is a popular notion that psychologists use when they do community oriented research. How can psychological research help communities? What are the best practices to work with underrepresented populations? What is the role of scholars to give back to minority groups when they do research with them? This is under the cortex. I am Özge Gürcanlı Fischer-Baum with the Association for Psychological Science. To answer these questions, I have with me two extremely accomplished scholars whose expertise are connected to their personal identity and background. Dr. Patricia Rodriguez Espinosa is an assistant professor in the Department of Epidemiology and Population Health and also serves as the associate director of research for the Office of Community Engagement at Stanford Medicine. The goal of her research is to decrease health inequities among racial ethnic minority populations, particularly Latinx and immigrant communities, through transdisciplinary and community engaged scholarship. Dr. Luz Garcini is the interim director of the center for Community and Public Health at the Kinder Institute for Urban Research, an assistant professor in the Department of Psychological Sciences, and a faculty scholar at the Baker Institute for Public Policy at Rice University.
[00:01:45.100] – APS’s Özge G. Fischer Baum
Dr. Garcini is a licensed clinical psychologist and an epidemiologist, and her research focuses on identifying, understanding, and addressing the health needs of historically marginalized communities from a community engaged approach. They both recently joined us at APS’s new webinar series, Science for Society. It was such a well received, productive conversation that we also invited them to our podcast for our audience to learn from them about the nuts and bolts of community oriented research. Patricia and Luz, thank you for joining me today. Welcome to Under the Cortex.
[00:02:24.840] – Patricia Rodriguez Espinosa
Thank you so much for having us.
[00:02:27.390] – Luz Garcini
Thank you for the invitation. It’s a pleasure to be here.
[00:02:31.010] – APS’s Özge G. Fischer Baum
Thanks again. And I would like to dive right into my questions. My first question is, what is cognitive oriented research for you? What makes it different from other forms of research?
[00:02:44.090] – Patricia Rodriguez Espinosa
I am happy to get us started, I think. As psychologists we have long focus on improving population health and well being. However, our traditional research methodologies have oftentimes struggled to translate that research into real, actionable steps to reduce health inequities. We know that communities with little social capital, particularly suffer from an unfair burden of disease and mortality, and hence new research orientations have emerged, including community engagement, community based participatory research as new orientations with the potential to better engage those same communities and promote sustainable improvement in health and move the needle on what we can do with our science. Words matter in this context, I will not say community oriented, but I prefer to use terms like center or community driven. So we really are explicit in sending the signal that we’re starting from issues and topics that are really of importance for the community and that we’re really sharing the leadership, the resources, and the ownership of that work with our communities.
[00:04:04.750] – APS’s Özge G. Fischer Baum
Yeah. Thank you very much. And I want our audience to know about your research a little bit more. Patricia, which communities do you particularly work with?
[00:04:16.930] – Patricia Rodriguez Espinosa
Absolutely. I work primarily with Latinx or Latino communities, both here in my local area as well as across the country. I do a lot of work with immigrant populations, with spanish speaking populations, and I do a lot of work partnering with smaller grassroots organizations who are serving the need of those community members who oftentimes don’t have access to many resources and are having unfair burden of disease, and also living in a context that does not support their health or oftentimes their health of their future generations. I am a member of this community. I am an immigrant Latina female myself. I have lived and continue to live in this same communities, and from a personal experience, have witnessed the many challenges that these families and communities face in maintaining their health, in achieving social mobility, and really what many of them came to this country to do. Achieving the american dream. But also from an academic standpoint, I have had an interest in Latino or Latinx health. I started my work studying topics related to cultural adaptation process and trying to understand decreasing health of these communities over time. And the more I did that work and the more I was exposed to other scientists in the work, especially really good work from sociologists and public health scholars, really understanding that it was not necessarily individuals, cultures, or their own risks or protective factors, but it was really our society.
[00:06:02.840] – Patricia Rodriguez Espinosa
And the many things that were exposing some of these immigrant communities, the longer they are in the US, including structural racism, discrimination, exclusionary policies that really impact their health over time. So that has shaped my own work and my own science, and I have a long term commitment now and passion to address those issues.
[00:06:26.410] – APS’s Özge G. Fischer Baum
Yeah, wonderful. Luz, what about you? Which communities do you particularly work with and why those communities?
[00:06:33.830] – Luz Garcini
Yes, similar to Patricia, I work with Latino immigrant communities that have been historically marginalized. So the undocumented community, communities with low level of acculturations. I have the privilege of working with migrants on both sides of the border. So we do some work on migrant shelters before the migrants come to the United States and also with the United States. And then within that, I like to emphasize the role of intersectionality within these communities. If we think about, for instance, people with intellectual and developmental disabilities, that are in these conditions, or people who have other marginalized identities. So it’s always important to give that lens in order to be able to contextualize our work appropriately.
[00:07:24.830] – APS’s Özge G. Fischer Baum
And one motto I hear from scholars whose work focuses on communities is for the community, with the community. What is this motto? You both mentioned this in passing as you describe your patient, about the research you do. But let me ask you more clearly, how do you apply this motto in your research? Absolutely.
[00:07:47.910] – Patricia Rodriguez Espinosa
I like to say we can think of this as a bit of a spectrum of how we might partner or engage communities. We can think of work that is done in communities, oftentimes fairly one directional. This is a lot of the science that we tend to do, and the next level is work that’s done with communities. Most of my work is at the final level or one step above that, which is work done by the community. And there are multiple ways of thinking about that. One of them is a research question that we really listen to the community. I have, for example, all of my projects tend to include a community advisory board. So making sure that we hear the voices of those most impacted by the issue that could be patients, depending on the area that you are working on, individuals living, a particular area where you’re hoping to do an intervention, et cetera. But oftentimes, for me, it also includes partners and organizations who have already been organizing to address that issue, in particular, making sure they’re also at the table. And as projects ensue, another way is to think, for example, as you’re hiring members for your lab or for your team or for a particular project, ensuring that you’re hiring members of the community as well, and that your projects include work that relates to living capacity.
[00:09:16.990] – Patricia Rodriguez Espinosa
So thinking about capacity building, I do a lot of work in thinking about trainings. For example, I have a project where we have done over 50 hours of training for community health workers. So making sure your work always includes a capacity building component, so long after the study or the grant is done, if you’re a student yourself or you work with students, knowing that it’s great students gradually, and they should, but oftentimes thinking about what are the sustainability implications of that as well for your partners. So there’s many, many ways that we can think about really integrating this into the work that we do, but always, always thinking about how do we incorporate both leadership and resource sharing with our community partners.
[00:10:04.770] – APS’s Özge G. Fischer Baum
Yeah. So that is really important to make sure that your community is involved and sharing information, research with them, and hearing their voices. Luz, what do you think about this. How do you apply these principles?
[00:10:19.750] – Luz Garcini
Yes. So in my perspective, very similar along the lines of what Patricia is saying, right. Is being the community as an expert and to be guiding their research through their voice, to be using the values and the principles of the community as the guiding force that decides on the research agenda, but also, most importantly, the timing. Right. And for us researchers, also requires for us to be aware of the context. And I’m not talking only about the present context, but the historical context in which the research takes place. So what has been that history for the community, so that that kind of sets the tone in terms of how we go about doing the research that we do. The other thing that is particularly important also is to take an approach of an empowerment and liberatory focus. What I mean by that is that the research has a social justice component. Right. So how is this information going to empower the community? How is this information ethically going to move the community towards addressing their needs or addressing those gaps in knowledge that we don’t have, making sure that we don’t contribute to stigmatize the community.
[00:11:45.670] – Luz Garcini
So for me, I try to stay rooted in a strength based approach that allows us to open our eyes in terms of how does this community continue to thrive, even in the midst of the so much adversity that they face, so that we elevate the voices and be able to use this knowledge to advance policy and advocacy for the community.
[00:12:14.330] – APS’s Özge G. Fischer Baum
Yeah. And also, as both of you both know, in psychological research, there’s a movement called unWEIRDing psychology. So for those of you who don’t know what it is, our listeners. So the term weird is used to describe a lack of diversity in research. It stands for western educated, industrialized, rich and democratic. So how do you think your research helps with this new perspective of unWEIRDing psychology?
[00:12:48.710] – Patricia Rodriguez Espinosa
Absolutely. I think there are some good things about these movements and some things for us to think about, which is great that we’re having this conversation. I think the general gist of the argument being that a lot of our science, our behavioral, our psychological science, has relied on an extremely narrow population from which we have hoped to generalize larger principles, generalize to humanity, et cetera. It’s definitely something that we all should be examining and thinking about. However, this movement has also received some backlash. Oftentimes, one of the promises, or the things that are attractive of community engagement has been this promise that we’re better able to recruit members of minoritized communities. And there is some truth to that. However, I like to mention that that is actually not the goal we get there as a follow up. The goal of that science is to produce work that really tackles issues that are of importance to the community, that has the potential to solve real world issues, especially those related to injustices, to inequities. And because of that, oftentimes our communities and our community partners are empowered through that process. They’re more eager to help, whether that’s in recruitment in some other form of data collection, the issues of recruiting a diverse sample, of having inclusive participation are things that we tend to see within community engagement projects.
[00:14:30.540] – Patricia Rodriguez Espinosa
However, that was not the goal of the project. We get there because we’re engaging in all these other best practices that allow our community partners to really come to the table. So it’s not an end all, be all. And I hope that that is not what we’re thinking of, that the ultimate goal is just simply achieving inclusive or diverse participation on our science. But we get there because we’re flipping the script and we’re doing science that really matters to our community partners, and that we’re creating the avenues for them to participate. So I want us to think a little bit about flipping the script, engaging in some of the best practices of community engagement and as a potential output, this inclusive participation and diversity will follow. But it is not the goal, and I would argue it should not be our goal. Our goal should be to produce that science that’s really meaningful and really impactful for our communities.
[00:15:28.730] – Luz Garcini
Yeah, I definitely think, echoing what Patricia just said, that this research is about stepping out of the box and doing in ways that are the preferred ways of the community. Right. To think about the methodologies that we used and to step out of the box and experiment with different kinds of methods, with different kinds of experiences to take an interdisciplinary approach. One of the works that we’ve been trying to do is thinking about how do we decolonize the IRB process. Right. Maybe the rigid protocols that we have for IRB might not apply to these communities, or that we need to be more flexible in our approach if we are going to gather these voices. One example of that is that sometimes we cannot make our data publicly available. There’s a lot of sensitive information, and if we are going to gain trust from these communities, we’re going to have to set foot and perhaps not make it publicly available. Right. How? Our informed consent. My informed consents, I can tell you, look very different than the traditional and informed consents that is used in academia. And it often takes me several sessions meeting with IRB, explaining them why we have to do things in a very different way.
[00:16:50.240] – Luz Garcini
So I think if we are going to truly have a commitment to diversity, equity and inclusion, we need to center community engaged approaches to science within all of these methodologies to be able to create a difference.
[00:17:08.730] – APS’s Özge G. Fischer Baum
Yeah, very complex answer. Thank you very much for answering this question from all perspectives. So you mentioned this as you were answering my question, but I want to follow up. What are the obstacles that you face when you do your research?
[00:17:29.470] – Patricia Rodriguez Espinosa
Yeah, I think absolutely. Lou started to describe some of those, especially the education that we still need to do of our own institutions to change some of the practices, the IRB being a large one, our ability to send payment to our community partners in a timely fashion. It’s another one that we oftentimes have challenges as well. But a couple of other ones also come to mind. For example, especially for any students listening or our junior faculty, that this is time consuming work. It takes a long time to develop the trust, to develop the partnerships before you’re even thinking about being in the field with a particular research study. So oftentimes, if we are engaged in this work, we have to find other ways of showing productivity to our institutions. So that might be one of the places where we can advocate for change, where this work is recognized, when we’re thinking about tenure, about our promotion processes. So we can show that we’re actually spending a lot of time just simply doing different things that maybe some of our colleagues might be doing. And another one that I like to point out is oftentimes also the lack of funding for those earlier stages of partnership development.
[00:18:51.510] – Patricia Rodriguez Espinosa
We are seeing a lot more funding lately, calling for community engagement approaches, and that is really exciting to see. But for anybody getting started, you oftentimes need funding in that beginning stages to have meetings with your partners, to start very small in some projects that might not necessarily yet meet the criteria for a large funding study, for a federal funding. But oftentimes no one funds that beginning stage. People somehow want us to already be at a very advanced partnership stage, and they’re not necessarily funding those early stages. Or I mentioned capacity building. Oftentimes many partners start doing a lot of colarning sessions together to really learn from one another, to develop what those partnership practices should be. Might have external facilitators who come in and do partnership agreement facilitations or others, but it’s really hard to find funding for those.
[00:19:53.610] – Luz Garcini
Yeah, I echo Patricia, and thank you so much for outlining all of those barriers. And not to repeat, to add on to what she just said beautifully said, actually, it’s the trust. A lot of these communities have been used before by researchers or the data hasn’t been protected. So one of the approaches that I do is that we need to think about giving before receiving, right? So as researchers, what can we give the community? We have a lot of power and privilege. So what are the tools, what are the resources that we can bring the community so that we can rebuild, that justify mistrust that exists and that has existed for so long? The other one, I would say the logistics, because for the community, the community is busy, right. A lot of these historically marginalized communities, they work three jobs eight days a week. So we need to adapt when we do our study. So this is not in our time, but it’s in their time. So often my research takes place at nights, on the weekends, when people are not working, because that’s when they can jump in. It requires us sometimes to bring babysitters right in the field, to be doing it in the middle of cooking tamales or being in a place with a lot of noise, or even if it takes us to the streets so that we’re accommodating to the needs.
[00:21:24.800] – Luz Garcini
Transportation is another aspect that we often need to consider. Where are they going to go? And are the spaces that they’re going to go be safe for them? What are some of those? I can tell you, for instance, churches are an important place where people feel safe, but that requires a lot of negotiation and time. Another important limitation that we face is the measures, right? And this is the importance of using mixed methods that also allows us to get the qualitative data, because oftentimes those quantitative measures that we’re using were not developed for these populations. And it transcends language, is sometimes the way things are asked the meaning of these questions that won’t allow us to get the data in the way that we need to and that increase the risk for us to be gathering information, to be getting into information biases. And lastly, I would say, is the importance of sustainability. That is not only to be present in these communities while the grants are there, right? While the funding is there, or while the study it is. But we need to keep these long term relationships for the long term and to be stepping in situations that are hard with the community and to be there present, like I said, giving before receiving over time.
[00:22:56.790] – Luz Garcini
Because if we don’t, then that feeds the cycle of contributing to the mistrust that continues to make it very hard to become inclusive in our science.
[00:23:07.730] – APS’s Özge G. Fischer Baum
This is very insightful. Thank you very much. And I would like to ask you, is there anything else that you would like to share with our audience about your research?
[00:23:21.710] – Luz Garcini
I can go ahead on that one. I think it is important to have the boots on the ground. A lot of people claim that they’re doing diversity research without actually stepping into the communities and spending some time with the people, getting to know the people, training our future generation of scientists, of providers to be there.
[00:23:44.970] – APS’s Özge G. Fischer Baum
What about you, Patricia?
[00:23:46.970] – Patricia Rodriguez Espinosa
Absolutely. I echo Lucy’s comments. I would say maybe for any of our listeners who are interested in doing more of this work and you’re maybe unsure of how to get started is follow what Lucy said, go to the community, find out which are the groups who are doing working areas that you’re particularly interested in, and just make an effort to go. You just have to show up at the beginning. No agenda, no need to speak at a meeting if you’re showing up. That oftentimes comes as a measure of trust. Slowly people start realizing, oh, there’s this person who tends to be at all of our meetings or our events. And I think over time you’ll start developing new partnerships. Partners will come to you. People might start asking for your opinion on topics. So this is like any relationship. It takes a while and you have to really pay attention to the individuals and to the relationship. But simply don’t be afraid to get started. And over times your partners will tell you what to do, how to implement things, what to pursue, not to pursue. I think your job at the beginning is to really give.
[00:24:57.100] – Patricia Rodriguez Espinosa
Give as much as you can and show up for your community and your community organizations.
[00:25:03.810] – APS’s Özge G. Fischer Baum
Thank you, Patricia and Luz. Thanks again one more time for joining me today. So this was a lovely conversation. And this is Özge Gürcanlı Fischer-Baum with APS. And I have been speaking to Dr. Patricia Rodriguez Espinosa from Stanford Medicine and Dr. Luz Garcini from Rice University. If you want to know more about this research, visit psychologicalscience.org.