When doctors diagnosed Mary Douglas-Brown, 69, with breast cancer in 2004, she turned to her congregation at Pilgrim Rest Baptist Church in Washington D.C. for support, only to learn that it did not have a ministry to provide health and lifestyle resources that might help her through her ordeal.
So she did what any determined churchgoer would do: she talked to her pastor and got the green light to start a ministry herself.
Douglas-Brown visited several other local churches to find out what it would take to get one off the ground. Now, 14 years later, not only has she convinced fellow church members that eating better and exercising is worth the effort—her own successful cancer treatment is testament to that—but she also has convinced them to participate in research studies that address the heart health problems disproportionately affecting their community.
Douglas-Brown, fondly called “Ms. Mary” by friends, showed early on that she was serious about finding ways to help people take better care of themselves. At her church, her “know better, do better” attitude inspired her to coordinate health-related projects and activities, such as a weekly exercise class with a licensed instructor and the serving of healthier food and drinks during church celebrations. She even became one of the co-facilitators for the Prime Time Sister Circles that help women in midlife manage their health and wellness.
It was no surprise, then, that when Tiffany Powell-Wiley, M.D., M.P.H., an investigator in NHLBI’s Cardiovascular Branch, asked her help with a community-based behavioral change program that might improve the cardiovascular health of her community, “Ms. Mary” did not hesitate. The predominately black neighborhoods surrounding Pilgrim Rest, hampered by limited health resources, desperately needed the attention, she said.
“This was a chance to try to remove barriers and encourage African-Americans to participate in studies that could directly impact our health,” she said.
Getting boots on the ground
Thrilled that Douglas-Brown was on board, Powell-Wiley got down to business. For her initial study in 2014, she recruited Pilgrim Rest first, then five other local churches. Her idea: to find out if study participants could successfully use electronic activity monitoring wristbands to improve their cardiovascular health. She decided to focus mainly on black women, who are among the populations with the highest risk for poor outcomes after developing heart disease. They also serve as the matriarchs in their communities and are likely to influence others when they change their own behaviors.
Douglas-Brown worked side-by-side with Valerie Mitchell, the clinical research coordinator in Powell-Wiley’s laboratory, introducing her to the congregation and helping her gain approval from church leadership to conduct the study.
Powell-Wiley and her team also met with other representatives from Washington’s faith-based community, as well as local and federal government agencies and academic and health advocacy organizations, all which wanted to address obesity and cardiovascular health in their neighborhoods.
“Ms. Mary and members at the congregation became ‘super participants’ and have helped us maintain ongoing relationships that go beyond the church community,” Mitchell said.
Douglas-Brown said that’s because so much was at stake. When the researchers needed more participants, “I would go to the gym and reach out to my pool pals,” she explained. She knew the research could one day help the broader community, but “the draw for those who participated was just the desire to be healthy.”
For Avis B. Johnson, 63, a member of the health ministry at Pilgrim Rest, that desire was particularly personal.
“When Mary told me about the study, I knew it would get me moving again,” Johnson said. “My father had heart attacks and open bypass surgery, and I didn’t want to get to that point. I wanted to be able to recognize the signs and symptoms, say something’s going on, and get checked out.”
Ultimately, Powell-Wiley and her team recruited 100 participants, including 78 women. Her team held “data collection events” where participants, including Douglas-Brown and Johnson, rotated through six “stations” run by health professionals. The women got their vitals assessed, participated in a health behaviors survey, and learned how to use the wristbands, designed to measure 30 days of physical activity. The women then wirelessly uploaded their data to hubs at each participating church and could access it from a church or home computer.
In collecting this information, Powell-Wiley said she had two main questions: “What did the cardiovascular health factors look like for the community? And, was it feasible to use mobile health technology to promote behavior change?”
The answer to the first question was not totally surprising. Of the 78 women participants, 90% were categorized as overweight or obese. These women ate fruits and vegetables at amounts well below professional guidelines. And they spent more time being sedentary, and less time being physical active, compared to women in the study classified as having normal weight.
The good news was that “the study participants were interested in using wearable technology to monitor their physical activity,” Powell-Wiley said. That finding, she said, “set the stage for developing interventions that leverage wearables and mobile apps to promote and monitor physical activity.”
Since that 2014 study, Powell-Wiley and her team have conducted other related studies in these same communities. One found people are willing to use an app to monitor dietary intake, partly by taking pictures of their meals. Powell-Wiley believes that at some point, the app could be used to provide counseling around diet.
Proving that relationships matter
For all their efforts at stirring up interest in observational studies and clinical trials, Powell-Wiley and Mitchell said, their biggest takeaway has been the importance of building trust between researchers and the communities they study.
Before even talking about their studies, Powell-Wiley and Mitchell worked to overcome being perceived as outsiders. They routinely showed up as guest speakers for the two Sunday services at the churches they had identified. They brought videos and talked about the benefits of a healthy heart and just generally engaged with the congregants.
“So when we started to recruit for our studies, the congregations knew who I was and who Dr. Powell-Wiley was because they had seen us there,” Mitchell said. “And we made sure that we didn’t just get a measure of what their health looked like, but made sure that we gave that information back to them so that they could take it to their physicians,” Powell-Wiley explained.
Avis B. Johnson, of Pilgrim Rest, did just that.
After participating in the 2014 study, Johnson continued to monitor her heart rate, blood pressure, and steps on a regular basis. But last year, she developed a tired, draining feeling whenever she walked just a few steps.
Her cardiologist monitored her heart for several days and found the rate was dropping so dramatically, he told her she “probably would have hit the floor” if she had been standing. In short order he scheduled her for a pacemaker, which she has had since April 2019.
Johnson says her participation in clinical research gave her what she needed to advocate for herself, engage with her doctors and, maybe even save her life. She said she can now pass that knowledge on to the women in her family for generations to come—and also encourage them to enroll in studies.
“It’s important to participate,” she said. “We need to get a true picture of what health looks like in the communities we live and spend our time in.”
Douglas-Brown agrees. She is now cancer-free, and her journey started, she said, during those talks with her oncologist about the value of clinical trials.
“Those conversations stuck with me, and I participate [in research] now whenever possible,” she said. “[Some] people still think we’re just guinea pigs, but my participation shows otherwise. Even if the findings don’t help me, I know they will help the generation after me.”