Oby Ukadike: Good day ThinkResearch listeners. Our break from new podcast episodes is coming to an end, and we are back. Thank you for staying with us as we took some time off. Our first episode back is with Dr. Carrie Fisher and miss Sofia Ladner of the Institute for Community Health. Join us as we talk with them about health culture, language justice, and how this supports rigorous research. Enjoy the episode.

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From the campus of Harvard Medical School, this is ThinkResearch, a podcast devoted to the stories behind clinical research. I'm Oby, your host. ThinkResearch is brought to you by Harvard Catalyst, Harvard University's Clinical and Translational Science Center, and by NCATS, the National Center for Advancing Translational Sciences.

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Dr. Carrie Fisher is a research and evaluation scientist and the senior manager of learning and development at the Institute for Community Health. Ms. Sofia Ladner, MPH, is a research and evaluation project manager at the Institute for Community Health and the community and staff engagement manager at the Leah Zallman Center for Immigrant Health Research.

The Institute for Community Health is a nonprofit consulting organization that provides evaluation, applied research, assessment, planning, and data services. The Institute for Community Health also runs the Leah Zallman Center for Immigrant Health Research, which partners with immigrant communities, advocates, policy makers, and social and health systems on actionable research to improve immigrant health and well-being.

Hi Carrie and Sophia. Welcome to the show.

Carrie Fisher: Hi, Oby.

Sofia Ladner: Hi, thanks for having us here.

Oby Ukadike: Thanks for being here. So we are just going to jump right in, and I wanted to ask-- can you tell us a bit about your backgrounds, where you're from, your academic background, kind of what led you to this work and the research you're doing now?

Sofia Ladner: My name is Sofia Alejandra Ladner. I use she/her/ella pronouns. I am originally from Argentina, from the beautiful city of Mar del Plata. I came here with my family when I was young. I actually grew up in Revere, Massachusetts, which is just north of Boston.

I actually went to school for global health. I thought my dream was to work at the World Health Organization, kind of change the world in that way. But as I was close to graduating, I really wanted to get home-- and by home I mean Boston-- and really work in the community that I grew up in. So I decided to do a master's in public health here, and I concentrate in community health.

Yeah. And then I decided to apply to the Institute for Community Health, which is where I work with Carrie at now. I thought it was really a great place for me because I really wanted to do research and public health and work in programs in the community that I live in and I grew up with. Now I'm a research and evaluation project manager. I started as a research associate here.

And most recently we have a new research center that started here at the Institute for Community Health called the Leah Zallman Center for Immigrant Health Research, so I have a role there to work in community and staff engagement and relationships. I kind of love the work that I do. We get to do a lot of really cool research here, but also in other parts of the country, and with Carrie. She's been my mentor for a really long time, and she's helped me grow a lot in qualitative methods. So that's kind of where I found my niche here.

Carrie Fisher: And my name is Carrie Fisher. I use she/her pronouns. My family is from the northern New England area, Maine, and I grew up in New Hampshire. I majored in cultural anthropology and Spanish, and after that spent some time in Hartford, Connecticut doing applied health research at the Hispanic Health Council there, which was a very cool introduction to the world of public health research. We were doing some just really interesting and innovative work, especially with injection opiate users and with HIV prevention.

So with that as kind of my launching into the world of research, I did a PhD in cultural anthropology at the City University of New York Graduate Center. And from there wound up with very much still a passion for health after doing my dissertation work in rural Nicaragua, and wound up again at the Institute for Community Health where we do a lot of program evaluation and applied health-related research. And that is where I have the privilege of knowing Sofia from.

I guess I'll just add that when we say health-related research, we're talking about a really broad definition of health. So we are not just talking blood pressure and heart health and stuff like that. We're talking about social determinants of health. So that includes housing, that includes economic resilience and power, that includes ability to communicate, that includes the many other things that are under the umbrella of social determinants of health.

Oby Ukadike: Perfect. Thank you. Thank you both for your introductions. And even from that introduction, I appreciate you defining kind of what falls under the health-related research and the social determinants of health. Can you talk to me more, both of you, about the work you're doing now? And also can you talk a little bit more about the Institute for Community Health?

Carrie Fisher: Sure. Yeah. I can start with a little elevator speech about the Institute for Community Health. We are a non-profit organization that does consulting. We do a lot of applied research. We do a lot of program evaluation. We also offer data services and facilitation and things like that.

We also sit within the Cambridge Health Alliance, which is a non-profit hospital system in its own right. But we're sort of within them, and sort of our own non-profit. We're a group of about 30 people. Of the 30 of us we come from a really wide variety of backgrounds. We have people like me, with a background in anthropology or other social sciences. We have a lot of people from public health. We have somebody who started out as a bench scientist.

And I really enjoy working at the organization because there's just a lot of creative spark that gets generated by all sorts of different approaches like that.

Sofia Ladner: I could talk a little bit about the Leah Zallman Center. It's a new research center that just opened about a year ago at the Institute for Community Health, so we're housed within there. And it's led by the great Dr. Jessica Santos. Dr. Leah Zallman was a physician researcher that worked at the Institute for Community Health.

She tragically passed away in November of 2020. She was actually about to launch an immigrant health research center about a month before her death, and so most of her work and her research revolved around that. She had published a lot of articles to kind of push that agenda forward in policy, which was pro-immigrant. So the research center ended up opening after about a year of work by the board and by our executive director and also Leah's family, and so now Dr. Jessica Santos is the director there.

And we're just starting, but everybody at the Institute for Community Health is also staffed in Leah Zallman Center projects, so we get to do really cool stuff with the community and really integrating the community that we work with here into what our next research agenda should be and what is going to move policy forward, which I find really exciting because my favorite part of working at the Institute for Community Health and of my work is knowing that the research that I do will be applied and used in policy in other realms for advocates in social justice.

Carrie Fisher: Yeah and I'll just add too, that one thing that Jess Santos brings to the focus on immigrant health is, she has this really cool pre-existing background in economic empowerment. And so I think that bringing that together with immigrant health has been a really fruitful combination.

Oby Ukadike: So we have been able to have some conversations beforehand before recording, but I want to kind of set the stage and maybe have some things we're going to talk about defined before we get into a heartier conversation. So maybe we can talk a little bit about economic empowerment and what that means, kind of what that looks like, what we should be thinking about as listeners. I know that's a lot.

Second, and really furthering us into the conversation that we are going to have, what does health culture mean, giving some background on those two things?

Carrie Fisher: When we talk about economic empowerment-- I love it because it isn't just money. Right? It's a sense of an ability to control your economic situation. You can start with statistics and just see that people with stronger economic situations are way healthier in this country than people with worse economic situations. So right there, that's the first argument for taking economic factors into consideration.

But it's also, like, how much education do you have and what is your future earning power? And it's like, do you understand the best ways to take that money that's in the bank and make it grow by itself? Do you build up capital? Do you build up economic capital? Do you build up social capital? Do you have a network of people who can advise you?

There's a lot there, and I think it's about feeling like this sort of thing is under your control.

Oby Ukadike: Can you talk to us a little bit about health culture?

Carrie Fisher: When I think about health and I think about culture-- why are those two interconnected, right? We're not just talking about the health of your body. We're talking about your overall sense of well-being. I mean, bodies are bodies. Right? You know, everybody has a blood pressure, and your ideal blood pressure doesn't change with your culture. But what it takes to make you have a sense of well-being-- that changes according to your background, according to your culture.

We understand so much better now that there's a very strong connection between emotional health and physical health, and they influence each other quite a lot. And we also know that in order to be healthy, people need to be connected to a strong community. They need to have strong social ties. So we have the physical, we have the emotional, and we have the community level.

So when I talk about culture and health and what the relationship is, these factors are different for different groups of people, and that it's important to sort of understand where someone is coming from to understand how to promote and prioritize well-being and health.

Sofia Ladner: A couple years ago, at the beginning of the pandemic, we saw that in Cambridge Health Alliance catchment area Hispanic and Latinx folks were three times more likely to be having severe COVID and severe COVID complications than other ethnic groups. And so we did some interviews with folks that had recovered from severe COVID, so had been intubated or had been in the hospital for a really long time, and looking at if we could identify some social determinants that had caused that.

What we actually really found was, this idea of family and the ties that we have, that Latinx folks have-- I say "we" because I'm a Latinx person who lives in the area-- that Latinx folks have with their family and spending time with them. And that's one of the reasons why a lot of people got so sick, because they didn't want to stay away from them in the beginning of the pandemic.

Another reason that they didn't want to go to the hospital is because they didn't think that they were going to be taken care of better than they would by their family, than going to the hospital. So we saw a lot of these themes around culture and family come up that we were not expecting before those interviews started, which was really interesting.

Carrie Fisher: Yeah. And there is a super strong theme in those about associating being in a hospital or in a rehab center with depression. And so going home to family was a way to prevent post-COVID depression, was a strong theme.

Oby Ukadike: That is a great, great and powerful example of even what you're talking about, about culture and health. That really helps illuminate some of the things you're talking about. So then how do you take those realities that you've kind of pulled out of this research and apply that to other research and other areas that you're working in? And how do you use that to think not only about the quantitative of studies, but the qualitative and then-- it seems very layered, but in a really amazing way that contributes to more powerful research.

Carrie Fisher: There were a couple of things that came out of that particular study that are, I think, strong follow-ups. And a big recommendation that we had coming out of this was, reconsider the criteria for when you're going to be limiting visitors in the hospital. And understand that limiting visitors not only reduces infection-- yes, it does-- but it also decreases the well-being of the patients in the hospital.

So there's a trade-off there. And perhaps it's a particularly strong trade-off for Latinx patients, was what our study was suggesting. So going in that direction is one way to do it. I have a pet follow-up project that I'm hoping to figure out how to do coming from this one, which is examining-- so many of these participants talk to us about symptoms of trauma following this hospitalization, this illness and this hospitalization that they experienced.

And I want to examine a larger group of patients from different backgrounds to see if trauma symptoms is common or if it's specific to this particular group of people. Or maybe it's specific to COVID, given that it was such a traumatic thing for all of us. But to look at that and then see if there's some suggestions that arise from that about culturally-specific or possibly generally-helpful ways to reduce the traumatization of sudden hospitalization.

Sofia Ladner: For me it was so powerful seeing stories, just the power that a person's story can have. And it just keeps pushing and reaffirming for me how important qualitative methods are and how often they're either overlooked or they're paired with quantitative methods as, like, let's get a nice quote that goes with our numbers, with our data.

And it's like, no. You could do so much with people's stories. Those are the things that really stick with you and that you'll remember for a really long time, whether it's to a policymaker or to whoever your audience is. So it just keeps pushing for me that understanding of how powerful stories can be.

Oby Ukadike: Thinking about culture, if you feel comfortable, if you can speak to how you may advise other people to think about culture in these different spaces?

Carrie Fisher: As a cultural anthropologist, I've always been fascinated by the fact that I can see a thing and you see the exact same thing, and we have just very different interpretations of it. There are some big things that are easy to point at, but there's more subtle ways of interpreting and understanding events and words as well.

And I think with qualitative work, what I would encourage other researchers who maybe aren't cultural anthropologists to do, is not just think about what are the events one after the other that happened that somebody is telling you about, but also as they're telling these stories listen to what that implies about how they interpret the world.

So listen on the blow-by-blow level, but also listen on a meta level and see if you can come up with patterns that may be different from your own. When we can do that, that's when qualitative research is most powerful.

Sofia Ladner: I think in this specific project-- Carrie was the principal investigator on it and I was supporting the work, and we worked together on all parts of it and we had such a really good time getting through the data and talking about it. But for us, I think it was important for me to be in those conversations. I felt kind of like as a cultural liaison a little bit, and it's hard for researchers to have folks in their team that are part of the community that they're investigating.

But I think there needs to be some intentionality in bringing people into the conversations, especially when you're interpreting the data, to understand what people really meant by that. What does what does living here look like? Explaining, like, oh, you live in a triple-decker. That means that your family might live on top of you. And if you're not from here, you're not going to know that, right? [laughs] Or you have a shared staircase that you share with your neighbors. That's how people are getting COVID.

So it's a lot of things like that that are really important when conducting research like this, is to at least try to have someone on the team that can speak to the folks in the community.

Oby Ukadike: Language is so personal, and it can be passionate and it can be very deeply rooted. How do you think about this, again, as you're doing research and as you're meeting with these different groups and you're in these different communities? I heard you talking about kind of the cultural relevancy of having someone there who knows what a triple-decker is. And how do you kind of more broadly talk about that when you think about language justice? Why is it worth it? Why is it so important?

Sofia Ladner: We have a lot of do's and don'ts when it comes to language justice. Coming into a project or any research study that we want to start doing, the intentionality of language justice needs to happen in the beginning, because it takes a lot of money and a lot of time for interpretation, translation, our own time of prepping for things. Everything takes just double the time, and maybe more than that if you're incorporating more than one other language to things.

I have a really good definition that I want to read because-- and I want to credit that it's from Communities Creating Healthy Environments, and they have a language justice toolkit that they mostly use for advocacy. They put that "language justice is when we can express ourselves in the language in which we feel most articulate and powerful. We can communicate with greater precision and we can relate to one another in deeper, more democratic and equitable ways."

So for me language is extremely personal. I think for most people it is, and it's a great part of our own cultures, how we grew up speaking, whether it's different forms of American English or other languages. And when we're able to create spaces that promote being our whole selves, whether it's in a research study or somewhere else, that's a really special thing where we don't have to put a mask on and speak differently or not being able to express ourselves the way that it makes us feel most comfortable.

So working in evaluation and research and being especially in a field that's historically really problematic and has caused a lot of harm in a lot of communities and a lot of research just comes in, does their thing, and then leaves and doesn't create any trust or relationship building, these are one of the principles that we can use to achieve more equitable work.

Carrie Fisher: I love this phrase that Sofia just read about being able to express yourselves in the most-- is it "most articulate and powerful way." Think about qualitative research. Right? And what we're doing is we're asking people to talk about their lives.

If we are asking people to talk about their lives in the language in which they feel most articulate and powerful, we are going to get much richer data than we would if we were asking everybody to come speak our language. Even if I'm talking to somebody who can get by perfectly well in English but they are most articulate and powerful in a different language, we should be interviewing that person in that other language, then working with the data.

As the languages multiply, the complexity of these projects multiplies. If your whole team is not fluent in all of the languages being employed, then you need to do translation. But your data is so much more rigorous. You know, rigor is a little bit of a hot button word for researchers. I think that there's a certain knee-jerk definition of rigor which says, rigor is quantitative research and rigor is a randomized controlled trial with statistically significant results.

That is not how we define it. We define it as research that speaks to the experience of real people that can make a difference in the world, research that is connected to things that matter to people. So if research results are statistically significant because you talked to a whole lot of people and a bunch of them said the same thing, but you're only representing the experiences of native English speakers, that is not rigor.

Sofia Ladner: Yeah. A lot of people are excluded that are part of a community. It just opens up the possibilities to learning more from the community that you're talking to. And I think it also just helps with building trust and building relationships, and that's really what our job is at the end of the day. We want to build these relationships so that we can learn from people and we can have this exchange of knowledge.

You have the knowledge of your community and I have my methods. We have both of these things, and it's like, how do we build trust and how do we put them together in order to put something out into the world and to learn from each other? It really does hinder trust when we don't have these resources available to folks.

Oby Ukadike: Thank you. Thank you both. What are you working on next? What's in the queue? Are there other things you want to share with us?

Carrie Fisher: Sofia and I are working together on a couple of projects that are pretty exciting. They are project evaluations-- evaluations that are looking at the ways in which community organizers build power for progressive policy change. And those two projects are in different states all over the U.S., under super different conditions. Like, the conditions in Mississippi are really different than the conditions in Massachusetts.

All of these projects are trying to build community power to affect health-related progressive policy change. Thinking about community power as a way of increasing the health of the community; increasing that connectedness level, and what it takes to get there, which is absolutely an engagement with people. It was one of those organizations that did introduce us to the concept of language justice, and we're so inspired by their work.

Sofia Ladner: It's Refugee Community Partnership. They're in North Carolina.

Carrie Fisher: Yeah. Thank you. So we've been working on that and sort of figuring out-- you know, when you start from really different places, what does it take to build community power to affect progressive health policy change?

Oby Ukadike: Well, we're ready for your papers. We're ready for your next research. And we really appreciate you all joining us to have this conversation today, so hopefully we'll have you back soon to talk about more.

Carrie Fisher: That would be super.

Sofia Ladner: Thank you.

Carrie Fisher: Thanks so much. This was fun.

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Oby Ukadike: Thank you for listening. If you enjoyed this episode, please rate us on iTunes and help us spread the word about the amazing research taking place across the Harvard community and beyond. We are always looking to connect and collaborate with the research community, and would like to hear from you. Please feel free to email us at onlineeducation.catalyst.harvard.edu to inquire about being a guest on the podcast.