Director’s Innovation Speaker Series: Transformative Research Requires Insider Researchers
DR. JOSHUA GORDON: Hello everyone. Welcome to the NIMH Director’s Innovation Speakers Series. I’m Dr. Joshua Gordon, Director of the International institute of Mental Health, and I’m thrilled to be joined today by Dr. Leticia Márquez-Magaña. Before I introduce her let me have a moment to give you a few housekeeping notes. If you require technical assistance during the webinar, please use the Q&A box to communicate with event production staff, and they’ll do their best to help you.
We are going to be taking questions for Dr. Márquez-Magaña at the end of her presentation, but you can enter them into the Q&A box as any point during the presentation. And we’ll be joined later by Dr. Christina Borba, the Director of the Office of Disparities Research and Workforce Diversity, who will be moderating that Q&A.
Also, please note that this webinar is being recorded. The recording and transcript are going to be made available in the coming weeks on our website, at NIMH.NIH.Gov/InnovationSeries. So if you enjoy today’s session, and you think you know someone else who would enjoy it equally much, I would encourage you to point them to that recording, so that they can enjoy it at their next opportunity.
Now I’m really honored to introduce today’s guest, Dr. Leticia Márquez-Magaña. Dr. Márquez-Magaña is a professor of biology and a Founding Member of the Faculty of the Health Equity Institute, Director of the Health Equity Research Laboratory at San Francisco State University.
Leti is also the lead principal investigator of the SFBILD project, the building infrastructure leading to diversity initiative, which is funded by the NIH’s Common Fund. The BILD project provides grants to undergraduate institutions to implement and study innovative approaches to engaging and retaining students from diverse backgrounds in biomedical research. She is also part of the Enhancing the Diversity of the NIH Funded Workforce Program Initiative.
Scientifically, Dr. Márquez-Magaña started out as a molecular biologist. After graduating from Stanford University, she completed her PhD at UC Berkley in biochemistry, followed by postdoc back at Stanford. In 1994 she moved to San Francisco State to start her faculty career, and as I’ve said before she remains there now as a full professor. But there her focus of her career really switched to understanding health disparities and trying to figure out ways to remediate them.
Dr. Márquez-Magaña is going to be speaking to us today on the importance of insider researchers in such endeavors. Insider researchers are members of the populations that are being studied. Her focus of course is on biomedical and behavioral research.
She is going to discuss health disparities in groups or individuals experiencing social disadvantage, and how inside researchers can leverage their background and expertise to improve the inclusion of study participants to strengthen research methodology and ultimately to enhance the rigor and impact of studies, all things that we think a lot about here at NIMH. Dr. Márquez-Magaña, thank you for joining us, and welcome.
DR. LETICIA MÁRQUEZ-MAGAÑA: Thank you, Dr. Gordon. I just want to say that your introduction, I really appreciated it. And it was really nice that you made time to meet with me earlier last week. And so I just wanted to honor the fact that this is not just something as a throwaway seminar, I really got the sense that this is important, so I appreciate that. Now I’ll share my slides. And what I am going to start with is the title. And to recognize that for now my twitter handle is @brownlenses, but I haven’t figured out what to do next, and I’m sure that’s the case for a lot of folks.
In any case, as Dr. Gordon said I am the lead PI for the SF BUILD Grant that partners San Francisco State and UCSF, and our tagline is Enabling Full Representation in Science. And I think what you will see throughout the course of this presentation is the importance of enabling all biomedical scientists, from many diverse backgrounds, to fully represent all aspects of their social and gender identities. That the ability to bring those to bear on the practice of science is what is going to be transformative and improve the impact and rigor of the work.
So with that I’ll just say that, just some brief notes, just lead into any discomfort. Clearly when we discuss issues of race and ethnicity in this country, folks feel some sort of way about it. Discomfort often exists when you’re trying to make change. And so what I’ve taken here is a quote from Anna Hindley, who is the Director of the National Museum of African American History in DC, about the fact that leaning into discomfort is what’s necessary in order to elicit change. And to recognize that mistakes will be made.
So with respect to working across differences, microaggressions happen, and that’s soetmhing that is a given, and that focusing on not doing something is likely, and I don’t need to say this to the behavioral scientists in the group, it’s unlikely that you’re going to do that very behavior.
And so instead what I hope that at the end of this evidence-based presentation is that it’s clear that there is inherent benefit in having a diverse perspectives to the practice of science, and that thinking about microaffirmations is the way to go. Thank you for that comment, thank you for that perspective, that sort of thing. So I’m sure for many that’s something that they already know, but I just wanted to have those brief notes at the beginning of this presentation.
Secondly, I figured I would define insider versus outsider research based on this article. And so based on this, it’s actually a chapter, what was stated was that insider research is when research and participants share a common language and culture. Outsider is when researchers and participants, and obviously this is clinical studies, do not share a common language and culture. So this is about clinical studies, but it’s also in science education research for example, which is what we do in SF BUILD.
So the next is a poll. And so I figured I would get a sense of the house. The poll will come up, and if you could answer what do you think in terms of insider research, outsider research, select all that apply with regard to these four categories. And I think someone will come on and say when the poll is complete.
So what we see is with respect to insider and outsider research, most folks feel that outside research is more biased. That’s very interesting. And folks, well most folks feel that insider and outsider research are equally biased. The good science is not biased. I think the agreement there is the recognition that all science is biased, because humans do it.
And I think that the, obviously all answers can be supported. I personally think that insider and outsider research can be biased, and that both insiders and outsiders are needed in study teams in order to mitigate bias, and that that improves the practice of science. And yes, even rigorous, good science is biased. It’s something that boggles me in the middle of the night when I think about these things.
So I’m going to go ahead and close that. And I’ll continue with the presentation. So I think that for the most part the group understands that science is biased, and that it can be biased by both insider and outsider researchers, and I will hope to convince you that it’s the combination of having both in the study team that actually mitigates the bias and improves the practice of science.
So what I left out in the earlier definition of insider versus outsider research is that this group of individuals actually said that insider research is considered to be more rigorous if all other things are the same. So if the methodologies, the approaches, the sample size, all that is the same, then insider research is considered to be more rigorous.
And I think that’s sort of inherently understood, because if the researchers and the participants share a common language and culture there is going to be more rigor in the ability to at least analyze the data and now show other aspects where this is the case.
So this is actually a paper that was published by Dr. Fitzpatrick. And so what I’ve done here and in other places is to include a picture of the scientist, because as you were talking about insider researchers, and so this is a paper that was written in 2006, it looked at what benefits were derived by having minoritized individuals involved in research, and in this case it was HIV research.
And so what Dr. Fitzpatrick and her coauthors talked about is the fact that it provided a greater innate understanding of the social and cultural norms. And so that led to development of more relevant and community specific research designs.
She also talked about the fact that there is an implicit trust that was voiced by the communities, and having seen themselves reflected in the research team, and that oftentimes there are deeply rooted personal reasons for the minoritized individuals to engage in the research.
And I first learned that when I switched to cancer disparities research and learned that many of the cancer researchers actually either had had cancer or had family members who had cancer, and so they were really particularly passionate about the work. And in some cultural anthropology frameworks, passion is actually considered an asset.
So despite what I heard as an undergraduate at Stanford where science had to be dispassionate, you couldn’t have a connection to the work because it would taint the work, I think there is reason to say that if you really have personal reasons that you’re that much more committed to actually getting things done.
So what does that mean in terms of the current workforce? So this is Hanna Valantine, who is the inaugural Chief Diversity Officer at NIH. She is no longer there, but she published with Allison Gammy this paper that talked about representation in the biomedical research workforce. And what you can see is that, and this is 2011-2012, so it’s cross-sectional, and we’re looking at training, associates level training degrees, bachelors, masters, doctoral. And then in the faculty and academic research going from a system professor to full professor.
And what you can see is that if you look at the academic side that in all cases well represented men make up the majority of the biomedical research workforce, and underrepresented women are very small in numbers. In fact, my MPI on the SF BULD project was Bibbins-Domingo before she went to JAMA to be the editor-in-chief, and we used to say there’s a little slice down at the bottom, that’s you, me, and another handful of people. But anyway, personal is professional.
And so this paper by Oh et. al. actually highlights the fact that in this paper what was described is the fact that because, well this is the causal link that was made there, that because the majority of the biomedical research workforce is white and male, typically the information that’s gained from the studies led by these individuals inform what physicians and scientists are doing, and it’s really extrapolated from a largely homogenous population.
So this is again where the bias comes in. If you study a particular group, obviously the results that come from it are biased to be more generalizable to that group, and that’s part of the reason that we see health disparities consistently persisting, and in some cases actually growing. So it’s interesting.
So personal is professional. And the argument for having insider researchers in terms of health disparities research can be summed up in this cartoon. So Leonard Symes was at UC Berkley in 2008, was asked why have we made so little progress in the 40 years of disparities research, and now it’s obviously greater than 50 years.
And the comment that was made was that the research that’s being done in the research institutes is like going in here, but what’s outside are the unanswered questions, and that has to do with what questions are being asked, which has to do with the personal motivations of individuals in the biomedical research workforce in many cases, and then the unquestioned answers, that has to do with some of the bias that can come out. What we see here is that the unquestioned answers has to do with the ability to correct misinterpretations. And I’ll give a couple examples further on.
And then Luz Claudio who used to be at NIHS in 1997 published a perspective where she noted that minority scientists are more likely to ask questions that are relevant to minority communities than their white counterparts. And so again what that means is that minority scientists, if you’re working with defined populations from minority communities, are the insider researchers. That’s the way to get to answer these questions.
Interesting, many of us actually pursue these research questions despite the topic choice bias that was documented in the paper by Hoppe et al. And so the first author is Hoppe, and then the last author is Hanna Valantine. And she mentioned to me that getting this paper published actually took several years, because there was a lot of resistance to it.
But what it shows here is that in terms of RO1 funding, that if you’re looking at white proposals versus African American, black applicants, so proposals from white applicants versus proposals from African American black applicants, first of all there’s much less numbers, but if we’re looking at how many end up getting discussed and then funded, that mathematically it can be shown that if you control for everything else the funding has to do with what was the topic, is the topic seen as something that is worthy of investigation.
And so the proposals from African American black applicants, many of them were about black disparities, black communities, whereas not the same so much in the others, consistent with what Claudio showed in her paper, or discussed in her paper.
So insider researchers will work to get the questions asked for the communities that they come from. That is very important in order for it to transform the practice of science, because we need information from all population groups. So these are the other bullets. The first one was the innate understanding of the social and cultural norms.
And what I would argue is that that leads to better data collection, because of the community specific research designs, improved data analysis because there’s less misinterpretation of the cultural particulars, which I will show in the next slide, and therefore greater accuracy of the conclusions drawn, so greater rigor. And it also minimizes erroneous interpretations. So this can best be shown by a cartoon that actually was shared with me by Maggie Kagawa-Singer at UCLA.
And so here what we see is there’s the dinosaur. The dinosaur becomes extinct, and then later on paleontologists who are outsiders dig up the bones and assemble them. And so I’ve shared this with my health disparities and cancer class and have them actually do thought bubbles to see what they would say, and students are great. I just love their perspectives. So what they wrote that is like, who’s that?
So I think what you can see is the point that these cultural particulars can be misconstrued. And so I’ll share a couple of things from my own experience. So growing up as the child of Mexican immigrants, I remember often hearing about the lazy Mexicans. I was like, who are they? Everybody I knew had two jobs.
And so, my belief is that there is the siesta, which makes sense. In the heat of the day, that’s not when you labor. You labor like my Grampa Leopoldo. You get up, he would say I don’t work that hard, I get up in the morning, I go out into the fields, I work and get whatever I need to get done, I come home, I have lunch, I relax a little bit, then I go back out, then at sunset I come back and do everything that I need to come do at home, and then I go to bed. To me that’s a hard work ethic that he appreciated it because then I can give to my family. So it’s a different perspective on work.
But anyway, long story short, I always heard about the lazy Mexican, so that’s how it affected me, and that’s one of the reasons I worked so hard as a kid, because I wanted to over-effort and show that that stereotype was not valid for Mexicans or Mexican-Americans like myself.
This is more related to the behavioral health aspect, and this is the story from Guadalupe Avila who is a colleague of mine who earned her social work degree so that she could become a social worker and then actually a counselor at San Francisco State. And so what she talked about, and this is a picture of a Dia de los Muertos altar. I’m part of the Board of Directors for the Chicana Latina Foundation, and we had an altar at the recent, for Dia de los Muertos.
And so what it reminds me of is her story where she was working as an assistant to a social worker for a woman who had lost her eldest child. And the loss of that child had triggered a lot of chaos in her thinking and behaviors, and her children were actually taken away into child protective services.
And Lupe would visit her and could see that she was really improving. And so she went to her lead social worker and she said when will so and so get her children back, and her person said oh she’s never getting her children back, she’s talking to her son all the time in the come, and she’s actually got an altar to him in the house, she has really lost it.
To me, to this day that still kills my heart, because that individual was coping in a culturally appropriate way, but because of the misconstruction or the misinterpretation she was likely not to get her children back.
So it’s important to have insider researchers on teams. Other reasons to have insider researchers is because of the community cultural wealth that they bring. And this is a paper by Tara Yosso, who talks about community cultural wealth. So the community cultural wealth is a series of assets that individuals bring to bear on the work that they do.
So for example familial capital, the lessons that you learned from being within a particular family, whether biological or chosen. Social capital, the knowledge that you gain by being in a particular social environment. Navigational capital, which many of our historically under-represented students have, in figuring out systems in navigating through systemic barriers in order to achieve what they need to get done. And that is so helpful in the research. The students, they know that they can figure it out.
Resistant capital is the knowledge and skills that you gain to combat inequality, and I’ll share a story from my own experiences about that. Linguistic capital is not just the language but also the nuanced language in terms of, for example in Spanish we have many more words for love, caring, nurturing, than in English.
And so sometimes when I translate it’s like okay, well it’s sort of like this in English. So you have the ability to not just do the language but the nuanced language. And then the aspirational capital, the idea that you’re going to get there regardless of all the barriers and aspire to change things.
And so with respect to this, what we do in SF BUILD is we really help the students identify their community cultural wealth, because in our society many of these assets have not been seen as assets, they’ve been actually, man of our students are like yes, and I’ll share something about the linguistic capital that is the same story that I’ve heard from other students.
But in terms of the aspirational capital, it’s enhanced by communal values which I’ll talk about next, and then the resistant capital is what’s necessary to shift paradigms. And so I’ll share a story from my own lived experience.
So with regard to the enhanced communal values, we have gathered data at San Francisco State for several cohorts that show that the historically excluded students, so basically blacks and Latinos have a greater motivation to pursue science to get back to their communities. And in fact, that was shown in a Keck study.
So this is the study conducted by Keck at the CSU. So the California State University System, here’s the link, and what they looked at is the 2011 cohort, and they looked at the intervention was did the science students have the service-learning component in one of their courses. So the treatment is the six-year graduation rate for individuals who had one service-learning activity in their science courses, and then the control is no service learning, so no ability to use their science to give back to their communities or to give back to other communities, or just to serve.
And so what you can see is that for the underrepresented minority group, which we now call historically underrepresented or historically excluded, the six-year graduation rate went from 52 percent to 74 percent, which is an evidence-based practice for improving retention and graduation of students in the sciences, and it was not detrimental to the other groups. So you don’t want to hurt other groups.
But here the value affirmation was really important, and we used this data to get a grant from the UC Office of the President to fund a new training program called SF BRIDGE. And SF BRIDGE stands for Building Research Insiders to Dissipate Gaps in Equity. And the gaps in equity that we are addressing are with regard to tobacco control. So as we know from tobacco research, the tobacco industry has really affected black and Latino populations with regard to the tobacco related diseases.
And so in this grant We Got Next, We Got Next is the chant that is on basketball courts when a new group of folks come up to the basketball court and say hey, we’ve got next. It’s not about credentials, it’s about we’ve got next.
And so we are training inside research insiders, so we’ve got next, to look at how we can better control tobacco so that we can achieve the endgame in California, which is no more tobacco related diseases because the tobacco industry, it’s an aspirational goal. And so we use this data for that. And then I’ll talk about resistant capital.
So when I was about, and this is me, when I was four or five, in kindergarten or first grade, preschool or kindergarten, I’m not sure which, because until about three years ago I didn’t know that my mom had put me in kindergarten or preschool. So she had a bout in the hospital where it wasn’t clear she was going to – Anyway, she’s healthy now.
But at that point she was saying “miha, did I ever tell you that when you were a little kid, I put you in kindergarten, and you didn’t do very well, so I talked to folks, and they said oh, did she go to preschool? And the folks said no. And they said you should have put her in preschool.” So she put me in preschool afterwards. And so that explains a lot of my memories, because I was always a little lost as to where my preschool and my kindergarten, but I do have the following very strong memory.
In one of those situations, at a preschool or kindergarten, I was on the blacktop in a school in Sacramento California, it was really hot, and I was wearing this dress that my mom had made from fabric from Hancock Fabrics. Hancock Fabrics, you could get a roll of fabric for like a dollar, and so she had bought this fabric, and she put a faux fur collar on it.
And so I’m on the blacktop thinking to myself, you know, my dress doesn’t really fit in with everybody else’s, but it’s okay, I’m learning, I’m learning English, I can go home now and read in Spanish and English, this is going to be really good for me in order to advance.
And as I’m thinking these thoughts, a fellow classmate comes up to me and they say it’s too bad you speak two languages, it makes you so dumb. And in that moment I thought to myself, wow, I speak two languages, you speak one, maybe I’m not the dumb one. So that was my internal avatar protecting me.
And since then, I’ve recognized that data can be misused or misinterpreted to continue oppression, is the way I think of it. And so my challenging of inequity, to challenge oppression, over all of these years I’ve gained some knowledge and skills that I’m still learning from and developing in order to advance health equity.
And so one of the things that I have come to better understand is that if we have combinations of insider and outsider researchers, we can mitigate bias, and so that’s the topic of this slide. And so this article by Katherine Phillips on how diversity makes us smarter is just so well written. And it makes the case that when you have insiders and outsiders, differences of opinions, perspectives of understandings, you work harder to hone your arguments.
And so overall we all work harder, and that makes us, that’s why the hard worker, it makes us do more due diligence by the folks that we’re trying to, the national institutes of health, it’s translating discovery into health. It’s translating discovery into health for all population groups. And so it is really important to consider the inclusion of all population groups within the research teams in order to make sure that we’re doing right by our populations.
And so that’s one of the statements that was made by Oh et al, is that better science is actually achieved when there’s more information from all population groups. And at this point 40 percent of the US population are members of minoritized groups, so we need to make sure that we use strategies to better include them.
One of those things is that minoritized individuals have the implicit trust of the communities, and I’ll share some data that we have from our own lab, and that this improves recruitment and retention.
So in fact a meta-analysis done by Yancy et. al. showed that when they looked at papers that were published, there were about 95 looking at recruitment and retention data from 1999 to 2005 that research teams that included members of minoritized groups, that there was greater both recruitment and retention. However, they could not look at the effect of having principal investigators or PIs from these groups because the sample size was too small.
So let’s put together some data to see if we can make a case for, obviously if you have PIs, it will actually increase inclusion. So here is some data about the biomedical scientist’s workforce, 1990 and 2014.
First of all, as you know, the US census collects ethnicity as Latino and non-Latino or Hispanic and non-Hispanic, and then these are some of the racial groups. And so this is all Hispanics. But if we look at the data this way it renders Latinos invisible, and so it’s not super helpful in that way.
Nonetheless, if we look at the other population groups, white, Asian, black, and other, what you can see is the difference between the 1990 workforce and the 2014 workforce. And so for everyone, I want you to take a look at this, and then to make a conclusion about where you see the greatest difference in terms of the population group that’s being represented in 2104.
Now, think about that conclusion. And what you would predict about the inclusion of human genomes from different population groups if we look at a time period that sort of matches this time period? What would you predict in terms of the human genomes that are in the databases that are closer to the time period of 2016? How would they look based on the change in the workforce if you compare it to what’s going on in 1990?
So you have your prediction, let’s look at data from a different paper. And this is from Popejoy. And what you can see, and it’s not the same time periods exactly, but it struck me that if you look at the greater representation in Asian genomes in 2016 compared to 2009, one can make the prediction, although there is really no way to test it, that the greater inclusion of Asian populations in the biomedical scientist workforce has led to a greater inclusion of Asian genomes in 2016.
So I use this as a thought experiment with the students to motivate them to become part of the biomedical scientist research workforce. The biomedical research workforce. And so that they can be the agents of change that are needed to have greater inclusion in studies.
One of the ways that they’re being included at San Francisco State in studies is through a UO1 grant that we were awarded last year from the transformative research initiative. And that grant is actually to examine anti-racist practices in nature. We call it the Reclaiming Nature Project, because we know that many of the ancestral understandings of the connection between nature and communities of color is that nature is healing.
And yet as we can see in the next slide, this is actually a San Francisco News Article on our NIH funds, on our award to study anti-racist healing in nature. And what you can see is the picture that’s shown is what you typically see on the internet in terms of nature and who goes into nature. Fancy clothes. This is at least a group, most times it’s in isolation individuals going into nature.
And yet when we got this funding it was based on our PASITO study. So the preliminary studies that looked at the funding of our grant to look at anti-racist healing in nature looked at the PASITO study. PASITO is Promoting Activity and Stress Reduction in the Outdoors. PASITO also means little step in Spanish. And what you can see is here are the participants of our PASITO study. And we are working on a manuscript where after the PASITO study was published where the recruitment and retention was greater than 90 percent in both categories.
We looked using qualitative tools at what could have sparked that increase or those remarkable in my mind recruitment and retention numbers, because these folks that were recruited and retained were individuals from what has been termed hard to reach populations. And so they may be hard to reach for others, but they’re not really hard to reach for us.
And so one of the things that came out, and this is a Spanish to English translation because the qualitative research was done in Spanish by insider researchers at San Francisco State who speak both languages.
And what was found for one response is we always felt that they were friendly, this was the research team, and always thanking us for participating. They would come to our community and get involved with all that we did. And I think that’s what made people stay in the study. To see them not just as doctors doing experiments, but seeing them as someone like us, of our community, working to improve the quality of life for Latinos.
And so this paper is being written by Rebecca Mendez is the first author, Kathy Samayoa is the senior author. They are research insiders with respect to the Latino community, and they are both actually cell and molecular, I shouldn’t have said actually, they are trained as cell and molecular biologists. Rebecca also has an MPH, and Kathy has worked really hard to gain a lot of health equity research training.
But when they said that we would get involved with all that we did, this is a picture of Edgar, who was one of the research team members for the PASITO study. And what the community had asked is they said yes, we’ll go on the two-hour walks with you, give you our hair samples so you can look at cortisol levels, and complete all the studies, but what we would like for you to do is to work with our children to introduce them to science.
So before these walks happened we, and this is the royal we because I wasn’t there, but this team, which included Kathy, Rebecca, and Edgar, went to the Latina center and worked with the kids to extract DNA from strawberries.
And then they had these little necklaces from Eppendorf tubes with the strawberry DNA in it, because our participants wanted us to increase understanding of science with the students and their belief that they could be scientists. So we never measured it, but what we can see is there’s something about this that helped us, and it’s the role of insider researchers.
So insider researchers is the other reasons I think we’re funded for our UO1 grant to do the Reclaiming Nature study. And so it doesn’t say Reclaiming Nature on this outreach table that has been setup at San Francisco State, because we’re working with the community advisory team of 18 to 26 year-olds who are BIPOC TA, so transitional adults, and they didn’t like the Reclaiming Nature title, so they changed it to From the Hood to the Woods, and so we’re using that.
And what you can see is the outreach team are members of the defined populations for the work, which is black, LatinX, PhilipinX, and Pacific Islander. And this is the research team. And so this is myself, this is Charlotte Tate, who is a social psychologist and biostatistician, David Rebinaw who is PhilipinX and who has a doctorate in public health, Angela Gallegos-Castillo who has a doctorate in ethnic studies, and who is our community research partner. She works with Roadmap to Peace, which is one of our community partners.
And then Leslie Parra who is at Save the Redwoods League. And Leslie was the one that was the impetus for this study. She was a master’s student at San Francisco State, and as the outreach worker for Save the Redwoods she said I really want my community to be able to go into the redwoods and feel comforted by it. And so because of her we started this whole effort, now we’re funded to do the work to look at to see if exposure to nature in a culturally relevant and anti-racist way, grows telomeres and decreases cortisol levels, as well as improving critical consciousness, because we’re going to try to change our policies to be more anti-racist. So it really conforms to the NIMHD research framework for health equity where we’re going from molecules to society. And I can talk about it much more.
But grounding this kind of research at San Francisco State makes a whole lot of sense. The history of San Francisco State, for those who don’t know, is it’s the site of the longest student led strike in the history of the United States. It was for six months, and it resulted in the only College of Ethnic Studies in the country. And it was really to promote teaching and research by people of color, with people of color, for people of color.
And so for us moving into research by insider researchers, with members of the defined communities that these searchers come from, for the health of these populations, is something that makes a lot of sense. And actually, it fits really well into this model for transformative paradigm shifting research that was presented by Dr. Dankwa-Mullan in her paper with other coauthors, is the fact that in order to have paradigm-shifting research it needs to be transformational, translational, and transdisciplinary.
And so what I would say is that insider researchers are critical to understanding culture in a rigorous way, and to creating an accurate vision. Certainly, that leads to if it’s work done really effectively with community will approve adoption, or the impact of the work, and clearly that requires participation by all members, and so it’s very participatory.
And so I will leave it at that to leave some time for questions, enough time. This is the information for me. As I said this is my twitter handle for now, I haven’t figured out what to do yet, so I haven’t been tweeting for a long time, but I’ll figure it out.
This is the funding, the grant funds that we have. We have two grants that are funded by the NIH Common Fund, the SF BUILD Grant, and them most recently the UO1 grant. We are funded by the UC Office of the President for the tobacco related disease work, and then we just recently were funded by the NSF HSI IUSE mechanism to look at women of color in biology. And as we know women are underrepresented in biology, yet women of color remain underrepresented. And so by looking at their experiences we feel like we’ll be better able to address what’s going on. And these are the references that were in this talk. And I will leave it there and stop sharing.
DR. CHRISTINA BORBA: Thank you so much for that really amazing presentation on a topic that is very dear and close to my heart as well. I’m monitoring the Q&A, so I encourage people to pose questions, but I will take the liberty of asking the first question if you don’t mind. And I’ve written a few, so hopefully we have time for all of them.
My work is in global and local mental health, and what I have heard from some of the communities that I have worked with is twofold.
Some communities have expressed that they absolutely want the insider researcher as part of the product, because of your entire presentation of how they understand my culture, they speak my language, they look like me, but I have come across research studies where the community has actually asked for it to be an outside researcher, for issues around privacy, confidentiality, and not feeling comfortable talking about things like trauma or a serious mental illness with people that are considered inside researchers.
And so I was really curious about your opinion on that, and what should we think about as researchers when communities are asking for potentially both inside and outside researchers.
DR. MÁRQUEZ-MAGAÑA: My answer is always communities should drive research. So then they should have access to both. And I think that issues of privacy and confidentiality I think are always really important. I think that insider researchers, a lot of research in the past has been done by white researchers on white communities, and so how is, why is that issue not there. Just saying.
But I think the other thing that I’ve heard from minoritized communities is because of the stereotypes of who is a successful scientist and who is a successful researcher, that some folks will say well I’d rather have quote-unquote an outsider researcher, who is someone who conforms more to the stereotypes of a rigorous, successful, because they have been formatted to believe that those individuals are better at what they do.
And so I would question maybe a little bit. They’re saying privacy and confidentiality, obviously that needs to be addressed, but maybe it’s the collective threat that comes from, I don’t believe that members of my group can be the rigorous researchers, and then it discounts their confidence in that person being – yes.
DR. BORBA: Thank you. We have a question from the audience: How do you differentiate between inside researchers and research communities that they share commonalities with but don’t actually technically belong to?
DR. MÁRQUEZ-MAGAÑA: So what I really like about the definition that I presented from the Irvine paper, is that it talks about shared culture and language. And so I have known many individuals who are more fluent in Spanish than me and didn’t grow up in Latino communities. That is definitely an aspect of being an insider researcher that doesn’t necessarily have to do with which family you were born into, that sort of thing.
Also I have known individuals who have spent, I’ll just give an example, I think of Jane Goodall, she wasn’t a gorilla, but she spent so much time that she was accepted ultimately as someone who was part of that community. So I think that there’s’ that idea.
What I will say is that I think, when I talk to my colleagues at UCSF, and Tom Plan in particular who is the new associate (inaudible) for anti-racist research there, he says I can teach folks how to do research methodology that is HIPAA and privacy and all that, but I can’t teach folks to understand the cultural nuances that come with being like in my case the kid of Mexican immigrants and being Latina for 59 years.
I mean, there’s a lot of training that went into those 59 years. And so yes, I think that’s where there are aspects of insider research that doesn’t have to come from where you were born into and your lived experienced, but that can be learned or experienced. But I think that insider research is wishy washy in terms of that.
DR. BORBA: We have another question. I identify as a Muslim, and doing my research on suicide prevention in the US Muslim community what CBPR approaches, Community Based Participatory Research, for those in the audience, LBGTQ individuals are at great risk for suicide. Many in the Muslim community may reject a queer Muslim scientist conducting research. Any advice you can give?
DR. MÁRQUEZ-MAGAÑA: Wow. I can’t even wrap my head around that. What I will say is that what I learned is that when I went to talk to Latina cancer survivors, I thought for sure that they would see me as an insider. I mean, I’m Latina. As soon as I said that I went to Stanford and Berkley, all of a sudden, I became an outsider. So I don’t talk about coming from Stanford and Berkley. San Francisco State is okay. That doesn’t mess with anything.
So I talk about my mom, I talk about growing up with my mom, I definitely use more general public language, more familiar language. And so my suggestion might be not to share the sexual orientation at the beginning, but to wait until the trust is cultivated.
It’s the same thing with any friendship relationships. I mean, growing friendship relationships. You start out sharing what the commonalities are, and then once there’s trust you can share the other parts. But that’s a hard call. I can’t really relate in terms of that particular issue.
DR. BORBA: We have a comment. Thank you for such a wonderful presentation. Yes, on the importance of accurate interpretation of the observations and so much more that makes the science better and more rigorous, so thank you.
Kind of going back a little bit about what we were just talking about is about how insider does an insider have to be to gain benefit? Is the common experience of being minoritized a benefit even if the researcher is not from the particular community being studied? And you touched upon that a little bit.
DR. MÁRQUEZ-MAGAÑA: To my knowledge there are no rigorous studies to that effect, so this is really anecdotal. But what I can say is that as a Latina working with minoritized groups, I feel that I have a more inherent connection because I’m recognized as non-White. And then I have colleagues, because Latinos, as you know Christina, we go from really dark to really white.
I have Latinos who are the socially assigned race is white, that’s from Camara Jones’s work. And they don’t get the same welcome. That’s just anecdotal. So what I would say is that yes, being non-white is definitely something that can spark trust.
But then again, I’ve attended many anti-black trainings and one of the things that I have learned is that despite the fact that I can relate, I am not black, and that’s a whole different thing, and I really need to listen to my black colleagues about what that is and how I can be an ally. I just need to know my place.
DR. BORBA: Another question that just came in. Similar to the law requiring inclusion of women in studies, is there a law requiring inclusion of different races in studies?
DR. MÁRQUEZ-MAGAÑA: That I know of, there’s not a law, but there is the 1993, I think it’s called the Revitalization Act in NIH, where it was required that women be included, and then that leads to when you submit your proposals an inclusion statement about women, about racial/ethnic minorities, about different ages. So to my knowledge it’s not a law, but there are similar regulations across those various groups.
My problem is that they are not, so the first time you propose to do QPCR, if you’ve never done it in your lab, but you have some preliminary studies that show that you can do PCR, you can be funded. But the next time you go to get the renewal, if you didn’t get the QPCR done you shouldn’t get funded. I’ve been on NIH panels, that’s just the way it is. With these inclusion criteria, I see folks get their first grants saying they’re going to intend to reach these populations, and then they write the renewal and they haven’t achieved their metric.
People will say well next time they’ll get it right, and I’m like no. Let’s do the same thing, if you didn’t get it the first time – I don’t know of any laws. So maybe that person can say. There are regulations, but they’re not, in my opinion they’re not enforced in a way they should be.
DR. BORBA: And so workforce diversity is of huge importance for the NIH and the NIMH. And as you have presented today about how having more insider researchers really does have an effect on more people participating in the research process, more unbiased type of research. What’s your suggestion for us recruiting and retaining insider researchers?
DR. MÁRQUEZ-MAGAÑA: First of all, I think that when folks think about their training programs, to move from a deficit lens to an asset lens. So as someone who was minoritized at Stanford and at Berkley, my understanding of why I was being nurtured, I don’t know I was being nurtured, the reason I was being recruited to the sciences is that it was a social justice kind of thing, and that they were going to work to overcome the deficits I brought in.
And those deficits included parents who were uneducated, coming from a poor family, speaking two languages because somehow the understanding was that I didn’t speak English well enough. Anyway, and so it was all deficit based, right.
And so then the training programs were organized to give me role models that supposedly I didn’t have. But my parents and my grandfather are amazing role models of resourcefulness, resilience, hard work ethic, all the things that you want in a stellar biomedical scientist.
And to give me money, which that’s fine, and to provide tutoring in those things that was perceived deficient in me. If training programs instead focus on the assets, the assets that these individuals bring to the practice of science, different perspectives, the linguistic capital, the social capital, the navigational capital. Read Yoso’s paper. Then you feel better.
And I would end with I was lucky enough to be in a meeting in our college of ethnic studies with an Africana Studies professor speaking to a UCSF investigator who was interested in cancer disparities, especially around prostate cancer. And her comment to him, and she is a white investigator, is I don’t understand, we’ve worked so hard to get black men to get prostate cancer screening, and they just don’t come.
And the Africana Studies person said we’re tired of hearing about how deficient we are, how we are always going to get more prostate cancer. Instead, if you were to say the black man is center to the family, and their health is really important, and to really come from an asset-based lens. And I thought to myself, yes. You want to join something where you feel good, you don’t want to join something because you’re lacking all this stuff and they’re going to fix you.
DR. BORBA: Someone had a thank you for you. Thank you so much for sharing with us very insightful research finding regarding the importance of minority representation in research. So a big thank you.
One of my last questions, keeping an eye on the time, is really about community engagement and community advisory boards. I wanted to hear your opinion on that, and then we can wrap up.
DR. MÁRQUEZ-MAGAÑA: I think community advisory boards are critical, because for example our Reclaiming Nature project is with BIPOC TA 18 to 26 years old. I haven’t been 26 for 33 years. It’s so different to be 18 to 26 now. And they have given us so much insight. For example, when we asked about any barriers that they might see with saliva collection, they said, well you’ll take my DNA and clone me.
And I was like wow, that is a real fear, but scientifically we know that degraded DNA that comes in saliva samples, there’s just absolutely no way to Jurassic Park it, that scene where they just put all the letter codes, that stuff isn’t going to happen. And so we’ve actually created a module to show how Dolly was cloned and how you require intact cells, so folks can see we can’t clone you. But how would we have known? So they are critical.
NIH however doesn’t always see that. And so we are having a lot of problems getting the appropriate incentive structure for our CAT, we call it the Community Advisory Team, so we call it the CAT. We want to feed the CAT, we want to nurture the CAT. Anyway, you need money, and it’s hard to get meal approval. They’re coming from communities – Community Advisory Boards are critical, but there needs to be systemic facilitators to include them.
DR. BORBA: I wanted to thank you again. This was really such an insightful and important topic that we covered today. Like Dr. Gordon said earlier this will be available on our website as well, and I wanted to thank everyone for attending today, and all the very best to you as well.
DR. MÁRQUEZ-MAGAÑA: Thank you, I really enjoyed this.
DR. BORBA: Thank you everybody, take care.