Andrea Bradley-Ewing, MPA, MA
Computational Research Faculty; Director of Community Engagement Research, Health Services and Outcomes Research
Full BiographyCourtney Berrios, MS
Research Assistant Professor of Pediatrics, University of Missouri-Kansas City School of Medicine
Full Biography
Children’s Mercy Research Institute (CMRI) and the Community Engaged Research team are committed to conducting research that is patient-centered, responsive to community priorities, and engages community members in all phases of the research process. Andrea Bradley-Ewing, MPA, MA, is the Senior Director of Community Engaged Research, Health Services and Outcomes Research, and CMRI Research and Inclusion Officer. She leads efforts to increase community collaboration in CMRI research. “It is important that the groundbreaking research conducted at the CMRI is informed by and meaningful to the patients, families, and communities we serve,” she said.
In 2021, CMRI established the Community Advisory Board (CAB) whose members include parents, caregivers, and community leaders with diverse backgrounds, expertise, experiences, and perspectives. Since its inception, CAB members have collaborated with researchers at every step in the research process —from study inception to dissemination of study results. Increasingly, researchers want CAB members to play a larger, more active role in implementing their projects.
Epigenomic Research in Black and African American Communities
In 2023, Courtney Berrios MSc, ScM, CGC, Genomic Medicine Center, presented her research project to the CAB. The project is a supplement to an award Elin Grundberg, PhD, Genomic Medicine Center, received from the National Institutes of Health that looks at the potential links of chronic stress to biological (epigenomic) changes in immunity that impact asthma risk and morbidity in Black and African American children. Berrios’ project included conducting focus groups with Black and African American community members to learn more about their perceptions of epigenomic research. She also wanted to ask about possible strategies to increase trust with historically marginalized communities and minimize risks associated with this type of research.
CAB members provided input on the study and thought it was important to be thoughtful and culturally sensitive to the way epigenomic research was discussed in Black and African American communities. This included providing insight into focus group locations that were comfortable to the community. Initially, researchers had planned to host focus groups at CMRI, but community members recommended other locations, including local libraries, churches, and Black-owned coffee shops near public transit. CAB members also helped develop culturally appropriate recruitment materials as well as recruited participants from within their community circles. They also encouraged diversity in focus group recruitment with respect to age and socioeconomic status.
CAB Members as Focus Group Moderators
CAB members Daysha Lewis and Stacey Daniels-Young, PhD, were involved in those initial discussions, provided recruitment strategies for African American community members, and helped develop the focus group discussion guide. Dr. Daniels-Young is a retired research psychologist and former director of the Black Health Care Coalition, and Lewis is a social worker at Drumm Farm Center for Children. She is also a trained doula and doula instructor and has worked as a parent-educator and community health worker. Both are actively involved in the community and are African American.
“Courtney was interested in getting specific input from African Americans, and I jumped at the opportunity,” said Dr. Daniels-Young. “We started talking about ways you could get input and about focus group questions. We talked about how to get people to participate and where to go. As we talked to Courtney, our involvement evolved. We talked about if you're going to do focus groups, then have some Black people moderate them, and Courtney agreed.”
CAB members suggested Bradley-Ewing should be the one to moderate the focus groups; however, Bradley-Ewing thought CAB members should act as the moderators. She said that this made sense given that many CAB members had already completed some of the required research training as part of their roles on the CMRI CAB. Having Dr. Daniels-Young and Lewis act as moderators was also a natural progression of their involvement with Berrios’ study.
“We initially started more in an advisory capacity and then it just really grew from there,” said Lewis. “They asked us to be moderators. Not only did we help develop the questions to make sure that they were appropriate, but they also wanted us to be there as community members to help present and ask the questions to make it more personable because we were the representation in the room. We knew how to ask.”
Adding CAB Members to the Study Team
Berrios recognized that the project would benefit from having Lewis and Dr. Daniels-Young as the moderators. She noted that in both studies about focus groups and in her own research experience, people were more comfortable with moderators who represent their communities. “There is a connection of shared experiences that facilitates the discussion and allows the moderators to ask more insightful follow-up questions in the discussion,” she said.
Lewis also mentioned the benefit of representation in research and how involving community members in a project can establish trust and more openness. “It's more than just looking like the people in the room,” she said. “It’s having somebody that lives in your community and can understand from your perspective, all the way down to the language that you use and the way that you present yourself. For them to see somebody that looks like them and that talks like them, it shows that their voice will be heard.”
Because focus group moderators interact with study participants, Berrios knew she would need to get approval from CMRI’s Institutional Review Board (IRB). The IRB is responsible for ensuring that all research studies meet the highest ethical standards and that the rights of study participants are protected. “When we decided we wanted to have the CAB members moderate the focus groups and be more directly involved in the actual data collection, then we realized that we needed to take the further step of adding them to the IRB as official study team members,” Berrios said.
Creating a Streamlined Process
As Berrios pursued adding Dr. Daniels-Young and Lewis to the study team, she hit a roadblock; the onboarding process was complex and lengthy —often taking months. Her project was funded for one year, and she couldn’t wait months to add them. She reached out to Bradley-Ewing who then brought the issue to the rest of the CMRI leadership team. Leadership agreed that CMRI needed an easier, faster process for onboarding community members, and Amanda Matthews, Senior Manager of the IRB, made that happen.
Matthews understood the importance of including community members on research teams and the need to simplify the process. “As an organization, we want the community involved in research because their voices matter,” she said. Matthews used Berrios’ project as the pilot to streamline the process for onboarding community members.
Several years earlier, she had successfully streamlined the process to add students to research projects, using REDCap (Research Electronic Data Capture), a web-based system to collect research study data. “We mapped out the information needed from all departments involved and created one REDCap form, which automated the process. I started with students but then took the same steps to add visiting fellows, visiting research scholars, and now, community members.” The onboarding process that once took months now takes about a week. With REDCap, when the IRB adds community members to a study team, they are then covered under the CMRI’s Federal Wide Assurance (FWA) for the Protection of Human Subjects. REDCap also automatically alerts other offices like Research Education and Communications to ensure the community members receive appropriate training.
After Matthews created the REDCap form for community members, she worked with Berrios to add the CAB members to the study team, and Daniels-Young and Lewis then moderated the focus groups for the project.
The Benefits
Berrios said that having them involved was beneficial in every aspect of the project from recruitment to analysis but particularly with moderating the focus groups. “One of the biggest benefits was the rapport they had with focus group participants and being able to say, ‘I'm a community member like you and I'm working with this research project as well.’ It facilitated openness with the group and made it feel less like a formal discussion and more of a conversation yet still followed the study discussion guide.”
Lewis also noted that because she and Daniels-Young are from the community, it helped participants feel at ease. “Some people came in the room that knew me from the community, and that made them feel even better because they’ve seen me actively working in this community,” she said. “It instills a certain level of trust for them to hear that I’m involved in this process and not just a face to come in here and ask these questions. That made the participants feel comfortable.”
After completing the focus groups discussions, Dr. Daniels-Young and Lewis were instrumental in helping with analysis of the focus group data, including helping develop the coding framework. Berrios presented the study findings at the 6th ELSI Congress in June, a conference that focuses on the ethical, social, and legal implications of genomic research. Both Dr. Daniels-Young and Lewis are listed on the presentation abstract just as any other coauthor and study team member would be. “One takeaway that I noticed was Courtney was very open to learning from us and getting our input,” said Dr. Daniels-Young. “I have found that researchers at Children's Mercy aren’t defensive about their research but want to open it up and get other perspectives that might make it better. That’s like a breath of fresh air. It's a great trait!”
Berrios found the partnership with Lewis and Dr. Daniels-Young to be invaluable to her work. They brought their extensive knowledge, experience, and expertise to the team. Like any other official partner or research team member, the two were also financially compensated for their roles and included on study publications. “Having community members as study team members elevates the overall quality of the research,” said Berrios. “It became a partnership where we all have ownership of this project and are all committed to it and can all give input at every stage. I hope they feel they made an impact. They certainly did. I know that the study would not have been as good without their involvement.”
“This project highlights the essence of community engagement in research. Community members are vital in ensuring research is equitable, inclusive, and important to the broader community,” said Bradley-Ewing. “As an institution, we are incredibly fortunate to partner with amazing families, caregivers, and community members who make up the CMRI CAB. Together we work to pursue discoveries to improve the health and wellbeing of children in our communities and beyond.”