How Whole Communities–Whole Health Nurtures Connections with Study Participants
For Whole Communities–Whole Health (WCWH), building trust isn't just a means to an end — it's a goal in and of itself.
Operating primarily in Del Valle, east of Austin, WCWH’s flagship cohort study examines how social, environmental and biological factors shape health over time. Now in its fourth year, the study focuses as much on fostering enduring relationships as it does on collecting data.
Community Engagement Manager Shirene Garcia, who leads the project’s data return workgroup, emphasizes that trust begins with personal connection. She helps coordinate community outreach events, then engages with potential participants at those events and follows up with those who may be interested. “You only have so much time at an event to speak to a family,” she said. “You follow up with them through a phone call, and it's in those few minutes for whoever's willing to listen to get the message across: ‘This is what we're doing, this is why we're doing it, this is how it could benefit you.’ It's important that you engage them in a human way — reassure them, answer any questions."
Garcia singled out team members like Research Coordinator Sarah Smith, who go above and beyond to sustain these connections. “Participants are always mentioning Sarah’s name,” Garcia says. “She makes it a point to talk to the families whenever needed and goes out of her way to do that. Having that personal connection for them, I think, is very important.”
All the time and patience building trust has paid off. At the end of 2021, after the study’s first four months, WCWH had enrolled 15 families and 36 participants. Just three years later, earlier this year, the team enrolled its 160th family, and there are now nearly 500 participants.
Data and Dialogue
A cornerstone of WCWH’s community-engaged research is its commitment to returning data to the participants, offering tangible insights into their environment and health. These reports provide information on key health indicators such as air and water quality, sleep patterns and physical activity levels.
For families in Del Valle, environmental concerns like air and water quality are particularly pressing. “I like to let people know that we do air and water quality tests in participants' homes and then return those results to them,” Garcia said. “It's a big concern for many families in the areas where we work, and being able to provide them with the results is valuable information for them.”
By returning data in accessible formats and addressing participants’ concerns, WCWH ensures its findings extend beyond academic use. These reports provide families with practical information and affirm that their contributions are both valued and valuable, reflecting the project’s broader mission to engage with the community in meaningful, lasting ways.
“Air and water quality are big concerns for many families in the areas where we work. Being able to test those and provide them with the results is valuable information for them.”
— Shirene Garcia, community engagement manager
Feedback from participants helps shape how data is shared, with early ambassador families playing a key role in refining these approaches. One ongoing challenge has been returning data quickly enough to meet expectations. While the team aims to provide updates at least once a year, logistical hurdles sometimes cause delays. “When I realized we were not going to meet a deadline, I communicated it to them,” said Smith. “I think that’s been really important: when we make mistakes, which we will make, we’re honest about those to families.”
This transparency fosters trust and ensures families see themselves as partners rather than subjects of study — an approach that could also serve as a model for engaging families in research elsewhere.
Bridging the Trust Gap
Recruitment and retention are significant hurdles for any longitudinal study, but the scale and complexity of WCWH’s cohort study has presented particularly unique challenges. "I came into this project knowing it would be a challenge,” said Smith, who leads the team’s recruitment and retention workgroup. “It's in the name: it's a grand challenge. So I expected it to be difficult in terms of recruitment, which is the hardest thing for any study, really, especially for a study that's asking for monthly data collection for up to five years.”
For participants, the monthly data collection can feel daunting, especially given its time commitment. “It's somebody coming to your home, potentially — that's one to two hours every month, for five years,” Smith said. “That, in itself, is going to be the number one thing that probably turns a lot of people off.”
However, participation is flexible. While all families agree to use the study’s mobile app and complete surveys, other components — such as saliva samples, home beacons and water testing — are entirely optional. This flexibility helps ease concerns and allows families to engage at a level they’re comfortable with.
“I think it's really important that when we make mistakes, which we will make, we’re honest about those to families.”
— Sarah Smith, research coordinator
Even so, certain aspects of the study, like saliva collection, require sensitivity when addressing questions or concerns. Clear communication ensures participants understand the process and feel empowered to make informed decisions about their involvement.
To further support this trust-building process, WCWH established a Community Strategy Team (CST), composed of local leaders with firsthand knowledge of the community’s unique challenges and strengths. The CST has been instrumental in ensuring the study aligns with participants’ needs and concerns.
For example, three years ago, at the CST’s suggestion, WCWH hosted free workshops about childhood diabetes, cyber-safety awareness and other topics important to families in the community. This initiative has since evolved into the Community Resource Day, an event featuring classes, keynote speakers, a resource fair and family-friendly activities. Last year, over 100 community members attended, alongside 35 organizations and 61 volunteers.
It Takes a Village
Another way WCWH has built trust is through partnerships with local community-based organizations (CBOs), which connect families with resources beyond the study’s purview — food security programs, language classes and other community services.
“I think one of the things that they've done so well is fostering trust within the community by prioritizing these meaningful relationships with community-based organizations, who are already engaging and doing the work with these families,” said Maggie Jaime, the executive director of AVANCE, a nonprofit that has served East Austin families for 25 years. “I think it's ensured that (the participants) don't see themselves as research subjects.”
“The community needs to feel that their voices are heard and their needs are understood. That’s the foundation of mutual respect.”
— Dr. Charles Moody, founder and CEO of Community Coalition for Health
This trust extended within families and beyond, fueling a powerful network effect, according to Mia Greer, the chief operating officer of Community Coalition for Health (C2H), a local CBO that has collaborated with WCWH since the initiative’s infancy. “If I feel good about it, I'll tell my sister, and if my sister feels good about it, she’ll tell her friend,” Greer explained. “That word-of-mouth trust was huge in building participation.”
WCWH’s recruitment efforts also extend to local schools, churches and neighborhood events, where team members prioritize being present and visible — part of a broader commitment to what Greer calls resource-sharing, which she cited as the greatest benefit these partnerships provide. “We don’t want to gate-keep anything,” she said. “The idea was [for them] to get as involved as you can in the community, with the local school districts, and for us letting them know who the key people were to help with recruitment.”
Just the Beginning?
While WCWH has made progress, respectful dialogue is still key to addressing community concerns and bridging gaps between researchers and participants. “The community needs to feel that their voices are heard and their needs are understood,” said Dr. Charles Moody, the founder and CEO of C2H. “That’s the foundation of mutual respect.”
The team’s efforts to listen closely and respond to feedback shape everything from how data is reported back to families to which community events they attend. This balance between collecting rigorous data and respecting participants’ lived experiences is integral to WCWH’s model of community-engaged research.
"This one project is small, but in the end it’s going to yield an impact so big that it'll ripple into your community, and it'll affect you and your kiddos, and it'll make lives better."
— Maggie Jaime, executive director of AVANCE–Austin
Ultimately, WCWH aims to leave a lasting impact in Del Valle, providing both immediate benefits and long-term insights into the health challenges facing the community. Jaime sees WCWH’s presence as an opportunity for the community’s future. “This one project is small, but in the end it’s going to yield an impact so big that it'll ripple into your community, and it'll affect you and your kiddos, and it'll make lives better,” she said.
She added that WCWH’s approach could serve as a blueprint for other projects elsewhere. “This could be a model for engaging families in research in other places,” Jaime said. “The need is there, for sure.”
On the other hand, as she pointed out, “Why take this anywhere else? You could literally just put it down the road, and it would still be applicable, and it would still be beneficial.”
For Greer, the vision for WCWH goes beyond research. She sees potential for the program to inspire a new generation of students from these communities. “My hope and dream is that UT will not only bridge barriers when it comes to this program, but also getting those students to the school, because that's another thing altogether: a lot of people that live in the Eastern Crescent area don't even think of UT as a school to go to, that it's not our school,” Greer said. “And I tell them all the time, ‘It is your school! Your mom and dad pay taxes for that school.’ So, I want to see more people from that area (become) students. Then maybe one day they're the researchers.”