The Community Research for Health Equity (CRHE) program, managed by AcademyHealth and funded by the Robert Wood Johnson Foundation (RWJF), supports community-led research to address local health care system issues of importance to communities of color, people with disabilities, LGBTQ+ individuals, and other historically marginalized populations.
Over the past year, we have been featuring interviews with CRHE grantees to showcase and celebrate their work during relevant celebration and recognition months. In the eighth interview of this series, AcademyHealth Senior Research Associate, Maura Dugan (she/her), speaks with Cynthia Soto-Render (she/her), Landon Wolf (he/him), and Tami Moore (she/her) from the Oklahoma State University research team to discuss their current project and to celebrate community-led research on women’s health. This project seeks to equip reproductive health advocates with community organizing strategies complemented by community-based participatory research approaches to collect stories from individuals with direct experience of reproductive health inequity in the Tulsa area to influence health system policy. The conversation has been edited for length and clarity.
Maura: How did you select your research question?
Cynthia: I think what makes the project so special is that it started with a story of an everyday person and her authentic experience with her reproductive health. Instead of letting a difficult and scary health problem shut her down, she chose to share it. She said, if this happened to me, I have no doubt that this has happened to other people.
This research project listened to everyday community members. We invited them into spaces to share their experiences with the medical field. They shared what happens when they go to the doctor - what their experiences are and their feelings.
We aimed to create a space where we're able to be in relationship with the people and their stories. We have taken an approach that takes a lot more time. I think the data that we've been able to collect has been a lot richer because we have been in a true, authentic relationship not just with the people, but with their stories.
Tami: Our project is about reproductive health; it's intensely personal. People have stories that are full of pain and loss and grief. We learned early that you can't move fast through that. One of the things that is really powerful, is observing how our methods have the effect of really honoring the experiences. People come away from interacting with our research team feeling like their story matters. We want to collect these stories, and we want them to be part of making sure that this stuff doesn't happen anymore. Their stories can be the basis for change. Stories are at the heart of this work. Because of our approach, folks come away from this feeling like they're contributing to something that makes a difference for themselves, their community and their own children.
Maura: What have you learned from your study so far?
Cynthia: I learned a lot more about my community. Oftentimes connecting is done through using your relationships that you already have. For this project, we built upon relations we had to invite people into spaces. Then, those people invited people they know into spaces. We can all come together and share our stories.
I've learned the importance of having these moments and how much more of these types of spaces are needed to have conversations so we can be present in each other's stories. Because then you feel like you're not alone. Their story feels different when they’re in relationship with other people with similar stories. It doesn't feel as heavy. It doesn't feel as isolating.
Landon: With the context of our topic being so intimate and personal and truly hard work-- if there was not as much intentionality placed on relationships, genuinely building with each other, and the time that it takes to genuinely build trust in the community, it would have failed a long time ago. We would have had people stop coming and it would have felt like how a lot of other experiences are felt in the Black community -- where we are only a data point or researchers want your perspective, and what they do with it is out of the community’s control.
Seeing community members see themselves a part of the systems change, knowing that there are experiences that individuals have had. These stories are painful. Not only are we honoring their stories and making sure that there are spaces for them to tell their story and be heard and be seen, but also allowing them to see themselves as a part of the change. Community members say, ‘I'm not just a victim, I'm not just a story. I'm not just a data point.’ Creating spaces for them to not [just] tell their story, but actually be a part of creating the change and each step of the way having them co-create what the next step looks like.
Maura: How does being part of and embedded within the community of focus inform your work?
Cynthia: We created an environment where community members are able to control the data within the research. The data doesn't belong to us researchers, it belongs to the community. Doing this work for the community but doing it with the community is really important. When it comes to community and systems change, we must listen to true authentic narratives of the people without outside interpretation.
Tami: We accomplished what we said we thought we would because we really let the community work. It is 100% driven by what the community leaders have decided they need to do. That in and of itself is so powerful. This process is something that researchers within the community will be able to use to change systems anytime that system isn’t working for them.
Maura: How do you want to celebrate and think about your work, and the future of reproductive health research, during Women's Health Month?
Cynthia: I would like to celebrate our approach that we've taken. We have been intentional about what we're asking of the community. We're asking them to reshare harm and their health care experiences. We built a system to show we care about them, the person behind the story. We've been very intentional about utilizing trauma-informed approaches to data collection. Some of the feedback we've received was that this process was healing, and that sharing their story made community members feel less isolated. The approach that we've taken has really gotten us some rich data that I don't think that we could have got any other way.
Landon: We are all so much more interconnected than we think. I think what's been exciting for me is the sense of belonging that people have felt, the sense of security, safety, and genuine purpose. How I want to celebrate the work is knowing that people left thinking ‘My story matters.’
Community members have the skills, the knowledge and the network to create change. It can help make these pains that we all experience a little bit better. To have a community that feels like they have ownership of a change making process is so important and so powerful. Especially here in Tulsa, where we have a history of harm, being able to really be intentional in the way that we built relationships and dive deep into the process of creating change is something that will live long past the grant’s funding.
Tami: All along the way, I have had doctoral students from my program involved conducting participant observation. Supervised doctoral students are learning about being researchers by being involved in this. These young researchers are learning about how to collaborate with community members as co-researchers. It's critical to understanding the expertise that's in lived experience. I was so excited to hear the students share how observing this research made a difference in their understanding of what research was. I'm really appreciating that they had the opportunity through this experience to think differently about what the role of universities are in their communities.
If you would like to read more about the Oklahoma State University’s CRHE grant, you can view that here. To watch an interview with CRHE project team members Tami Moore, Cynthia Soto-Render, and Marshan Oliver-Marick on the value of community-led research, you can view that here. Earlier posts in this series featured CRHE grantees during Pride Month, Disability Pride Month, National Disability Employment Awareness Month, National Native American Heritage Month, Black History Month, World Teen Mental Wellness Day, and National Arab American Heritage Month. This work is made possible with a grant from the Robert Wood Johnson Foundation (RWJF). The views expressed here do not necessarily reflect the views of RWJF.