Making Their Voices Heard: Improving Research through Community Collaboration
This is a story about researchers, but it’s not about us. It’s about members of the Benning Terrace public housing community who were our co-researchers in developing and testing a program for youth about sexual health and safety. Residents had a direct hand in designing the program, defining the research questions, developing surveys, analyzing data, and sharing the findings—and their work made our work better.
When the project ended, we asked six community members—Dannielle Hamilton, Stan Hamilton, Julia Irving, Curtis “Coach” Peedy Monroe, Tia Newman, and Irwin Royster—to share what it was like to partner with a research organization. Their answers offer insights into the value, practice, and challenges of community-based participatory research, a policy research tool often underused outside public health that we hope gains greater traction.
We developed and evaluated the Promoting Adolescent Sexual Health and Safety (PASS) program in partnership with Benning Terrace residents, the DC Housing Authority, local service providers, and researchers from the University of California, San Diego.
When we first approached the Benning Terrace community about this program, we discovered that residents were wary, a reaction borne from an often-difficult history between researchers and communities of color. Residents were upset about having their privacy invaded, being left out of research processes that they believe don’t value their input, and being used as “research guinea pigs.” Many residents also felt disenchanted by programs that had come and gone, with very little sustainable change for the community.
Curtis “Coach” Peedy Monroe: I thought that, okay, here it is, you have one of these other big name organizations just coming to say this is what we did in Benning. Oh we did something in Benning before. Out of all my years being here at Benning Terrace in this community, trying to keep programs and getting resources for the youth here, I have ran into a lot of that. But [Urban] showed us otherwise. They didn’t make us no promises. It wasn’t nothing like “We’re going to give you all this if you do this.” It wasn’t nothing like that. It was straight structured for youth. It was actually something we were looking for and needed.
Dannielle Hamilton: I was excited. I was excited because it was change for the youth, the older youth, and I did want to see some type of program because I have older youth…. Because the other residents had been in different programs or experienced different programs and it didn’t work, I guess way before me, they had bad vibes. They were like “No, this is just another person. They think we rats and they trying to test us with different projects and stuff.” I heard all that but in the back of my mind I was like, “Well, maybe they right. I don’t know. This is my first time.” I was like “I liked it.” I was willing to try.
Q: Did this feel like research to you?
Irwin Royster: No.
Irwin: Because I’m a quasi researcher, so I understood what was going on, but it didn’t seem like research to me. Did it seem like research to the community? At times it did because of the feedback I got, “they think we’re just guinea pigs,” “they think we’re just lab rats,” “they think we’re dumb.”
… Unfortunately, you have to call it research. To me that’s the wrong thing to say because then people automatically feel like “Oh I’m a research subject now, I’m a lab rat.” I wish you could say something else about it. I think that’s a nice way to put it, community-based participatory research. It’s community—we’re all in this together. That’s another piece too. I do have to comment on that. I wish we could teach the community how community-based participatory research is done, and why we do formative research. This is what outcome it leads to. I don’t know if time was spent around that.
Q: Along the way, what made you change your thinking about what researchers do?
Tia Newman: I guess learning. Just going to all the meetings…. I have a good feel of people and stuff. It was like they genuinely care about the topics and the communities and stuff. That made me say, “All right. Let me work with them.” Regardless … they had their guidelines and stuff to follow. That was another thing (that was) hard for me: I had to follow Urban Institute by working with them and making sure I’m still committed to the community, which I am first and foremost. You see what I’m saying?… I had to work between because I wore a lot of hats, along with being a Resident Council president.
Stan Hamilton on the challenge of persuading people to open up
Julia Irving on residents’ primary concerns
Challenges to meaningful community engagement
Although researchers and residents worked toward the same goals, both groups approached the work differently. As researchers, we had to consider our grant restrictions. We were not funded to build a sustainable program but rather to develop and test a pilot for three years.
But for the Benning Terrace residents, this project was about their community and their personal lives. To a community, there is no project period, no limitations in scope. We had to find a middle ground. Building trust took time, effort, and footwork. It also required us to be flexible and respect the experiences, needs, and schedules of co-researchers who did not go home at the end of the workday.
Stan Hamilton: What I don’t like is when people come and say, “We understand what you’re going through.” No, you have no clue of what I’m going through around here. Until you live around one of these neighborhoods like this where it’s just constant shooting and killing and stabbing, you have no clue what we’re going through.
Q: Was that important to you to have people, researchers who you felt like were actually, who actually cared?
Dannielle Hamilton: It has to be important because if you’re coming into an urban neighborhood like Benning, and you’re working with us, I just feel like, and you’re working with our children, you have to be genuine. You can’t come here being fake because you want it to be as real as possible. You want someone that’s going to be there and really cares and knows where we came from.
Julia Irving: I think that Urban was extremely transparent. It boiled down to understanding the language that was used in that transparency. When you’re a programmer or when you’re a researcher, you understand when I’m saying that this a three-year grant, and we have deliverables at this day and at this date. We understand that, but to the community it’s like, “Oh no, it has to be flexible because I don’t feel like doing it today.” They don’t understand, “no, it’s not flexible. It’s due today, it has to be in today.” I think that that’s where some of the challenges laid, and trying to prove to the community that you weren’t the typical stakeholder somewhere in there may have skewed their perception of what was realistic and what wasn’t.
Tia Newman on researchers being closely involved and on the ground in communities
Julia Irving on the importance of having community members act as research translators
The benefits and rewards for research and for the community
The learning curve was steep, but the rewards have been significant. Input from residents improved our research design and data collection tools; for example, we developed a shorter survey with fine-tuned, culturally appropriate questions. The partnership and trust built within the community led to higher response rates and greater willingness among youth to participate in the PASS program. And community input ensured our analysis was more accurate and nuanced.
Perhaps more important, as co-researchers, the residents have a greater understanding of the impact they can have on their community through partnering with service providers and researchers. Empowered by the experience and equipped with solid research skills and data that they can own and trust, they are able to advocate for change in their community and ensure their voices are heard.
Dannielle Hamilton: They would tell you that in the beginning I was quiet. I wasn’t verbal. I’m the type that will sit back and observe people and see what it’s all about. The language, at first I understood it, but I was trying to understand it in my own terms. Then, when I started feeling comfortable, I started getting verbal. They would tell you, they always say, they used to always call on me to say something. I was like, “Why you calling on me?” I wasn’t verbal, and then I became verbal. They made me feel comfortable to be able to talk.
Q: You mentioned before that you had disagreed with some of the things on the survey and that maybe it wasn’t written properly for the kids that you’re used to dealing with.
Curtis “Coach” Peedy Monroe: Well I asked, I think it was Elsa, I just highlighted it. Told her we don’t think this will fit in with our youth. She took it back to PASS. Then, after that, the next survey came back. I think everything that we mentioned to her concerning any concerns we had, it was always ironed out. It wasn’t like “okay, we’re going to do it this way.” So I think that was one of the reasons why that helped make the whole program successful.
… The blessing was that PASS, the program, the kids enjoyed it. They not only enjoyed it, they had a voice in it. They was well educated on a lot of things they didn’t know that they have to deal with in life.
… Benning can be the model of the first try of PASS…. That’s why a lot of the youth, they really, when I say they understood, they knew. They were like, “oh yeah, they can make this happen…. If we help [Urban], they can help us.” That’s how they felt. They felt a part of something positive that they know they can use in life.
Stan Hamilton: It felt like research in the beginning, but it felt like family at the end, because we all came together. It wasn’t nothing [we] couldn’t talk about and that’s how it is with family. There shouldn’t be nothing you shouldn’t be able to talk about. I don’t care how big it is, how small it is. That’s just how it is.
Curtis “Coach” Peedy Monroe on building research capacity in the community
Julia Irving on being genuinely heard and understood by researchers
The first phase of the PASS project funded by NIH and based in Benning Terrace has ended. Urban staff recently launched the next phase—implementing and evaluating PASS in four new DC public housing communities—with new funding from the Administration of Children Youth and Families. Tia Newman continues to serve as the Urban Institute’s community outreach liaison, and additional funding to sustain the PASS model at Benning Terrace is pending.
- Linda Alcoff, “The Problem of Speaking for Others”
- Daniel S. Blumenthal, “Is Community-Based Participatory Research Possible?”
- Emilie Buchwald, Pamela Fletcher, and Martha Roth, Transforming a Rape Culture
- Kimberle Crenshaw, “Mapping the Margins: Intersectionality, Identity Politics, and Violence against Women of Color”
- Patricia Hill Collins, “Reflections on the Outsider Within”
- Vanessa Northington Gamble, “Under the Shadow of Tuskegee: African Americans and Health Care”
- Vanessa Northington Gamble and Deborah Stone, “U.S. Policy on Health Inequities: The Interplay of Politics and Research”
- Debra Langan and Mavis Morton, “Reflecting on Community/Academic ‘Collaboration’: The Challenge of ‘Doing’ Feminist Participatory Action Research”
- Sarah Maiter, Laura Simich, Nora Jacobson, and Julie Wise, “Reciprocity: An Ethic For Community-Based Participatory Action Research”
Writing: Somala Diby, sade adeeyo, Elsa Falkenburger, and Serena Lei
Photography: Lydia Thompson
Editing: Elizabeth Forney
Web production: Jerry Ta
Consulting: Matt Lawyue
Audio editing: Yanelle Cruz Bonilla
Special thanks to the National Institute on Minority Health and Health Disparities and the W.K. Kellogg Foundation for funding the Promoting Adolescent Sexual Health and Safety program.
Copyright © January 2017. Urban Institute.