As part of our effort to better understand approaches to community-engaged research and how they may help ensure research is equitable and actionable, we embarked on a journey to learn from those doing it well (learn more in our introductory blog post and our interview with Andrea Jones and Kenneth Wells on Community-Partnered Participatory Research). Ms. Harriet Yepa-Waquie and Dr. Nina Wallerstein graciously agreed to sit down with us to discuss their experiences employing Community-Based Participatory Research (CBPR), and the implications of engaging the community for equity.
During the interview, Ms. Yepa-Waquie and Dr. Wallerstein shared a great deal about the history, practice, and meaning of CBPR, including the importance of community stewardship and learning; the value of dialogue; the importance of trust and power-sharing between the researchers and the community; and the need for consistent support for long-term community-engaged research projects. In this post, we’ll highlight some key learnings and insights that we gathered from our conversation with Harriet and Nina. We encourage you to review the entire transcript as there is much more detail, for example, about the history of CBPR, Paulo Freire’s methodologies for dialogue and dialogue for action, the benefits and challenges of CBPR, and theoretical mechanisms (e.g., collective empowerment) that help explain health equity and health outcomes in CBPR.
Community Stewardship & Empowerment
Community stewardship emerged as an important theme for Community-Based Participatory Research - it starts with understanding how the research benefits the community.
As Harriet stated, “You can work with our people, do our research, but we want to know what you're going to leave for us. We want to know how you're going to help us.”
The work of being clear about how the research is going to benefit the community is more than simply stating the intended outcomes. How the research will tangibly benefit the community should be evident - what they’re gaining or what’s being left with them when the project is over. Importantly, we learned that these ideas of community stewardship are in part due to Indigenous theories and practices around governance. As Nina explains:
“The official Navajo Nation [Institutional Review Board (IRB)], which was the first Native IRB in the country, has a required section where you have to write how you're going to benefit the community. The IRB cannot be just individual cost-benefit or that I'm not going to hurt a person who participates as a subject, as a participant in the trial. You have to answer, ‘How are you going to provide education back to the community? How are you going to provide technical assistance back to the community? How are you going to provide the data and findings back to the community?’ Otherwise, the Navajo Nation doesn't even let you in the door. So, it's really different from academic IRBs. This is what stewardship is. It has to benefit the community.”
Community stewardship not only involves defining the goals of the CBPR but also understanding that the community must co-create these goals and must have the capacity to meaningfully participate in the research. As Nina explains:
“We used to call our community partners a community advisory committee. And now we've changed the name to Tribal Research Teams, they are researchers with us as partners… So as co-researchers we make decisions together along the way.”
“The team I work with has had funding from NARCH (Native American Research Centers for Health), an initiative at NIH with one of its goals to increase Native scholars. And in fact, in our team, my Navajo colleague Lorenda Belone started as a master's level research assistant. She's now faculty and leads our whole new grant effort because of NIH’s commitment to support Native scholars. Rebecca Rae, who also started as a research assistant with me, from Jicarilla Apache, is now a faculty member in my college.”
Community stewardship should elicit research born out of the community and done with the community. We learned that there are many benefits to doing community-engaged research this way. For example, the value of having the community as the driver of CBPR is summed up well by Harriet on several occasions:
“They empowered us to be able to share a lot of things that we wanted to offer for this type of research. She put us in the front driver's seat and she gave us and the process gave us a lot of empowerment that the answers are within our community.”
“CBPR is important to me because it's giving us a voice. It's empowered us, which is what we've been able to get out of this as a community. ... It really brings the values and what's important for the participants, as community members, to the forefront. It allows us to think about what's really valuable to each of us as individuals and as part of the community.”
The benefits of community stewardship are not solely localized to the community. These benefits are also for academic researchers. As Nina described:
“If you're not working on the ground, you're not learning in my experience. If I'm just kind of working up here at the University, I'm not continuing my own learning. So, I have to keep working with my colleagues and partners. The long-term work with Jemez Pueblo and other tribes is both really heartfelt and head-learning.”
Dialogue is Essential for Facilitating CBPR
If community stewardship is the driver of CBPR, dialogue is the fuel that keeps it going. The value of dialogue to CBPR is rooted in Paulo Freire’s work. As Nina stated, “The importance of dialogue and the importance of dialogue for action is really deep - one of the deepest methodologies of Paulo Freire.” During our conversation with Harriet and Nina, we learned about the necessity of fostering dialogue with those community members who are most affected by a given health issue. As Nina noted:
“Dialogue matters. Dialogue brings people together, different knowledges together. And how do you create structured ways for dialogue to be meaningful and to lead to action?...It isn't just having nice, comfortable, wonderful conversations or exchanges. It's for the purpose of action. And that's where equity comes in. It's for the purpose of improving health equity, reducing disparities, taking an issue like alcohol abuse in a community and saying, ‘let's do something about it.’ So, the dialogue is for a purpose.”
“The tribal Family Circle/Family Listening program brings fourth and fifth graders, parents, and elders together in a dinner-based program, with a curriculum to strengthen families and to strengthen kids’ connections to their history and cultural identities. Harriet is one of the facilitators, in her tribe, the program is given in Towa, given in their language. It aligns with their culture and identities for these kids, so that they can develop this protective factor around themselves… Because they want to be healthy and connected to the well-being of their community and their culture and language. As a white outsider, I can bring in prevention strategies, but they are the experts in their own knowledge of what’s important to community well-being. I can't say what that is. So, it’s been a continual process of co-learning.”
CBPR requires a shared research dialogue that is driven by the knowledge of community members. For this dialogue to be effective it means creating safe and supportive spaces where community members can express their ideas, in their language. As Nina explains:
“I have to depend on the knowledge of the community members who will often just go into discussing the issues for themselves in their own language, because it has to be done that way and then they will translate back to me what they want to translate back, which is fine. If they go into their own language to figure out how they want to lead a particular curriculum session, then that's really key. It's not for me to say. I wouldn't even know what's the right way.”
Dialogue with community members can help shed light on issues that may not be readily apparent to researchers and ensures that the focus of the research is well-grounded in the wishes and needs of the community. Furthermore, we learned that dialogue may help provide community members with a voice, feelings of respect, and empowerment. As Harriet explained:
“A lot of things that the community people voice and bring up are things that they've probably kept within themselves, their family, or whatever. They just never felt that it's okay to just say these things and this really empowers them as individuals, as families, as communities. Showing them that, ‘Hey, I have a voice and somebody can listen to me.’ There are lots of good ideas that come from these groups and the people feel respected, they feel listened to. And so I think that, in and of itself, has helped families and community members to make indirect changes, maybe not even knowing some changes within the community. Even our young kids are listened to and feel empowered, that they can make a difference in their own community.”
Trust and Power Sharing are Central to CBPR and Equity
Even with the importance of community stewardship and dialogue, for CBPR to be effective there must be trust and power-sharing among the researchers and community. Community stewardship and dialogue cannot happen without trust and power-sharing. Moreover, as we learned, trust and power-sharing are also essential components for achieving equity through CBPR. As Nina stated:
“Well, I think those of us who've been doing this have thought about equity and power-sharing a lot. What does it mean to share power with the community? It means letting go of our own leadership, it means turning leadership over. That's been a struggle because if I'm getting the grant, I have accountability to the funder, but I still have to turn over the decision-making to my community partners. I think it's a tension. It's a struggle. It means really being purposeful.”
Harriet further stated:
“I think the power-sharing is important because if a community is feeling that they can have input, that they have a say-so in how research is done in the community they also let go. Trust is a big thing. And this is where trust comes in, in the power-sharing. I think we learned over time to trust the University of New Mexico and Nina. She over time trusted us. So as time went on, through the work that we've done with the different types of research with them, that trust just became stronger. The relationships became pretty stable. And I think that is what really drives us in Jemez - that we know Nina is looking out for us, and we know that she's not going to go off on her own. She always goes through us, asks permission. There is the respect between us all, the researchers and the helpers and the assistants and the community, as well as the Tribal Research Team.”
“Our success is in really, really wanting to be there for the community. Because we know who we are. We know what we want. We know how we want to change things or improve things. It kind of feels funny when Nina tells us, ‘you all are the experts’ and we look at each other, thinking ‘I'm not an expert.’ It's not always about a degree. It's not always about credentials. Our experience and our knowledge make us experts. Sometimes it feels funny because, for me, anyway, I don’t always feel like an expert, but really I am because I've lived it. We are fluent speakers. We know the language. So, I guess I am an expert.”
Commitments from Funders & Universities Needed
Given the value of CBPR and community engagement, the commitment from funders and universities must continue and be consistent (This is a point that was echoed in our previous interview with Ms. Jones and Dr. Wells). As Nina summarized:
“At the University of New Mexico Center for Participatory Research we've been working really hard to improve the science of CBPR, including identifying promising partnering practices, such as power-sharing practices, that are associated with equity and other outcomes. This is from our NIH-funded Engage for Equity study since 2006. And we think it matters. Our goal now, where we see the field now, is that we appreciate the value of long-term academic-community partnerships; they can be really productive and successful - just like with Harriet and the Pueblo Jemez. We have also worked with two other tribal communities, with Ramah Navajo for almost as long, and the partnership with the Mescalero Apache is a little more recent. We're now moving to three other tribal communities. Those are long-term partnerships.”
“However, it's really a challenge to do this alone and those of us in the academy are often still marginalized. We don't get institutional support. I have a center for participatory research that receives zero institutional dollars. The only way we're funded is by us writing the grants. That’s the only way we're funded, which is wrong. We should have institutional support to be able to maintain long-term partnerships. Individual researchers do it anyway, even without funding, but we do it. So increasingly, there’s a recognition of institutional barriers. Where CBPR and community-engaged research has to go is we have to challenge the academy, we have to challenge institutions to provide the needed support.”
Deciding what to highlight from an amazing conversation with Dr. Nina Wallerstein and Ms. Harriet Yepa-Waquie was a challenge. The above snippets are only a handful of the critical insights that we learned. We hope that you read the entire transcript to learn more about their work and their experiences with CBPR.
Stay tuned for our next post with Dr. Melody Goodman on her work developing the Research Engagement Survey Tool to evaluate the community-engaged research process.
Tools and Resources
To learn more about Dr. Wallerstein and Ms Yepa-Waquie’s work, we encourage you to look at the resources below.