Andrea Bradley-Ewing, MPA, MA
Computational Research Faculty; Director of Community Engagement Research, Health Services and Outcomes Research
Full Biography
Children’s Mercy Research Institute’s (CMRI) mission is to accelerate transdisciplinary research that improves the health and wellbeing of children everywhere. Inclusion and diversity among research teams, study participants, families, and CMRI partners is essential to this mission. One of the CMRI’s inclusion and diversity priorities is community engagement. CMRI has a devoted Community Engaged Research team led by Senior Director Andrea Bradley-Ewing, MPA, MA. The team is committed to partnering with patients, families, caregivers, and community members in all phases of the research process — from study inception to dissemination — to ensure the institute’s work is patient and family centered and responsive to community priorities.
As part of the commitment to community engagement, the CMRI established the Community Advisory Board (CAB) in 2020 and the Youth Research Advisory Board (YRAB) in 2022. Board members provide input on CMRI research projects that impact their families and communities. CAB co-chair Mariah Chrans, IBCLC, PhD, said, “What the CAB brings to the researchers and to the CMRI is an opportunity for community perspective on the research that's being planned, occurring, and being reported. It gives an opportunity for the community to be involved and provide an outside perspective. It aids transparency, which is important in building community trust.” Dr. Chrans is the Programs Director for the Community Health Council of Wyandotte County, an experienced researcher in the field of maternal-infant health, and a parent to children with rare diseases.
CAB member, Kim Riley, is the founder and CEO of The Transition Academy, a disability college and career preparation center in Kansas City, and she has been involved with the CAB since its inception. “I see the CAB as a sounding board for research. It’s a source for the researchers to connect with the community and to the target audience that they're seeking to impact,” she said. “I hope that the CAB continues to evolve to the point where the community is informing the research.”
CAB and YRAB members represent diverse backgrounds, perspectives, expertise, and experiences. The CAB includes patient caregivers, community leaders, staff from community-based organizations, and researchers. YRAB members are teens and young adults ages 14-22 from neighborhoods throughout Kansas City. Both the CAB and the YRAB can become involved at any step in the research process. “Our board works with researchers to develop theories and strategies, create executable items, and follow through with evaluating those ideas and publishing the results. We even have researchers bring ideas for research before a project starts,” said Terrence Gallagher, CAB co-chair and longtime volunteer at Children’s Mercy.
I see the CAB as a sounding board for research. It’s a source for the researchers to connect with the community and to the target audience that they're seeking to impact.
While Gallagher, a semi-retired architect, brings both his business and volunteer experience to the CAB, it is his experience as a parent that drives his passion to help CMRI researchers. His daughter was diagnosed with Angelman’s syndrome at 10 and had other medical complications. She passed away in 2019. He said, “While researchers understand the parent or caregiver has a role in the health of their child, they don’t necessarily think like us — the parents or community members affected by their work. That's what the CAB does. It brings that voice, that head, that heart to the researchers.”
CAB Member and Co-Investigator: Utilizing the Expertise of Board Members
The CAB and YRAB both hold monthly meetings to provide input to researchers. However, community member involvement is not necessarily limited to a one-time review of a project. Several research teams consult with smaller teams of CAB and YRAB members for input on an ongoing basis. Other board members have served as focus group moderators on research projects and have presented research findings to their communities. Several CAB members are also now co-investigators on research projects.
Helena Laroche, MD, FAAP, ABOM, Center for Children's Healthy Lifestyles and Nutrition consulted with the CAB at the beginning stages of one of her projects. She is studying the impact of interventions that address risk factors associated with social determinants of health on childhood obesity program outcomes. Her project will compare outcomes between patients and caregivers who participate in a three-month intervention led by community health workers before engaging in the childhood obesity program to those patients who participate in the obesity program without the in-depth intervention.
Dr. Laroche engaged with the CAB to determine how receptive the community is to interventions led by community health workers as well as ask for input into which social risks to address and how to structure the intervention. Dr. Laroche said, “When thinking about interventions, it is beneficial to ask for community input sooner rather than later in the study.”
CAB co-chair Dr. Chrans appreciated that Dr. Laroche partnered with the CAB from the beginning of her project. She and fellow CAB member Bruce Reed, retired CEO and community volunteer, both were instrumental in providing input into Dr. Laroche’s project, including the intervention’s design. Dr. Chrans is also a co-investigator on the study. She said, “Bruce and I helped to craft the community health intervention that Dr. Laroche is doing. We helped to develop it, and our community health workers (at the Community Health Council of Wyandotte County) helped to inform it.”
YRAB: Giving Teens and Young Adults a Voice
The CAB originally included teen members; however, both CAB members and the Community Engaged Research team recognized that teens have different needs, expertise, and goals than adults for participating in community research boards. Something as simple as when to meet can create barriers for teen members; midday meetings that work best for adults often interfere with school obligations.
As interest grew in creating a youth research advisory board, Kim Randell, MD, MSc, Emergency Medicine, received an award in summer 2022 to explore the implementation and sustainability of youth research advisory boards at clinical translational science institutes (CTSI). The grant included funding to conduct a national review of youth engagement at other CTSIs and to study the process and outcomes of implementing a youth research advisory board at the CMRI. Dr. Randell’s study team included Bradley-Ewing, and the team created CMRI’s Youth Research Advisory Board.
“When we engage with teens, we do better research, but that is just part of the benefit,” said Dr. Randell. “YRAB is a long-game strategy. If we engage with youth who are underrepresented in medicine, then we can help them identify and access opportunities in careers that they might not have considered. We are also developing trust in research and medicine and demystifying research processes.”
Researcher Perspective: Engaging with the CAB and YRAB
Many of the CMRI researchers that have partnered with the CAB and the YRAB have commented on just how invaluable the expertise provided by the two groups is to the success of their research endeavors. Dr. Randell noted, “One of the biggest takeaways from collaborating with the YRAB is the positive impact that the input has on the research at the CMRI. If we don’t get that feedback from the youth, we could invest resources into something suboptimal and not have as much impact as we would like. You must go to the source. When we’re addressing adolescent health issues, then the source is the youth themselves.”
YRAB members also provided input on intervention design and content to directly inform a study led by Abbey Masonbrink MD, MPH, Hospital Medicine, to develop and implement an interactive tablet-based intervention that includes motivational interviewing and pharmacotherapy to help hospitalized youth (ages 14-21 years) who want to quit vaping. "The YRAB’s feedback is like gold. Often, their suggestions resulted in small changes that didn’t take a huge amount of time or effort. Yet, those changes will make our work stronger and more likely to succeed,” said Dr. Masonbrink.
Courtney Berrios MSc, ScM, CGC, Genomic Medicine Center, and Keith Feldman, PhD, Health Services and Outcomes Research, both brought projects to the CAB. They are lead co-investigators on two supplement awards that Elin Grundberg, PhD, Genomic Medicine Center, received from the National Institutes of Health (NIH) for her project studying the potential links of chronic stress to biological (epigenomic) changes in immunity impacting asthma risk and morbidity in African American children.
“We were seeking to engage minority communities in the research, and CAB members brought key insights about ways to successfully engage and build trust. The CAB is so valuable in bringing the voice of the community to shape our work so that research meets the needs of the community and is more successful,” said Berrios. Her supplement focuses on the perceptions of social epigenomics research and minimizing risks related to that research. She engaged with CAB members to assist with participant recruitment and focus group design, and to serve as community moderators for the focus groups.
The CAB is so valuable in bringing the voice of the community to shape our work so that research meets the needs of the community and is more successful.
When reflecting on the role of the CAB and its impact on his work, Dr. Feldman said, “I view the community members involved in the study as members of our study team. They offer unique and impactful feedback. We’ve already taken feedback from them and used it.” Dr. Feldman is partnering with the CAB to develop measures to define the representativeness of a patient pool, and four CAB members serve as study advisors on an ongoing basis.
Full Circle: Community Informed Research
Bradley-Ewing and the Community Engaged Research team recognizes that community members are in the best position to identify research priorities for their communities. “Community members are the experts when it comes to their lived experience and what matters most to them,” said Bradley-Ewing.
When CAB member Riley was part of an earlier study-specific advisory board, she shared her experience as a parent of a child with autism and advocated for research that addressed inequities in health care outcomes for children with disabilities from Black and Brown communities. Riley’s recommendation is now a reality. In 2023, Riley, Bradley-Ewing, and their collaborative partners from the University of Missouri-Kansas City (UMKC) Institute for Human Development received an award from the Patient-Center Outcomes Research Institute (PCORI) for their study, “Addressing Health Disparities in Black Youth with Intellectual and Developmental Disabilities (IDD).” The study team, which also include researchers from the Community Engagement Research Team and The Transition Academy, will partner with historically marginalized communities to develop a comprehensive, patient-centered outcomes research agenda to improve health and social outcomes among Black and Latinx youth with IDD.
Prior research in the IDD community has largely excluded Black and historically marginalized communities, contributing to health disparities including delayed diagnosis, misdiagnosis, and limited access to specialists.
“I'm hopeful that this initiative and its impact will mobilize marginalized populations that have not been the focus of study and allow them to come together to not only raise their voices, their concerns, but to let them dictate the agenda,” said Riley. “That is going to be innovative, and I hope that it will influence other researchers about the value of the community bringing solutions to them.”
Riley added, “I am grateful that Children's Mercy was able to listen to a non-researcher and to say, ‘Here's a community member who brought us a challenge, the grant originated with her, and we are now working as equal partners.’”
When reflecting on the PCORI award and the collaboration between community members and researchers, Bradley-Ewing said, “The CAB and the YRAB have had an invaluable impact on the quality of research at the CMRI and our responsiveness to the community. I look forward to even more engagement in the years to come.”