by Michele Berhorst • December 18, 2024
Morgan explains components of a physical activity intervention with her Community Advisory Board on June 26, 2023.
The Mayo Clinic’s Office of Health Disparities Research defines Community Advisory Boards (CABs) as “essential partners in research.” Their input helps align research efforts to community priorities, streamlines research ideas to address disparities, and most importantly, helps support changes that will help communities achieve health equity.*
At WashU, CABs serve faculty laboratories on the Danforth and School of Medicine campuses. CAB membership can include people from organizations in the public and private sectors and individuals who represent diverse communities to give voice to the issues, concerns and challenges regarding health care.
Three research faculty members in the Program of Occupational Therapy – Kerri Morgan, PhD, OTR/L, ATP; Susy Stark, PhD, OTR/L, FAOTA; and Jaclyn Schwartz, PhD, OTR/L, FAOTA – have developed CABs to bridge the gap between their academic research and the people in the communities they serve. Each CAB is unique, diverse and composed of members invested in the labs’ research goals and delivering the outcomes to their communities. Their guidance promotes communications, provides ideas and improves the quality and integrity of the lab’s work. Having a CAB helps rebuild trust between academic institutions and communities that have been harmed in the past by unethical research practices, biased methodologies or a lack of consideration for racial, cultural, social or historical factors involved. This collaboration creates better evidence-based practice to improve health outcomes for all.
Enabling Mobility in the Community Laboratory
Morgan’s Enabling Mobility in the Community Laboratory conducts community-based research to bridge the gap between services offered to persons with a disability through rehabilitation and in the community. Morgan initially formed a CAB for her $2.7 million, National Institutes of Health-funded study that compares the benefits of education and access to an adaptive gym with and without tailored, one-to-one coaching. “We specifically needed people on the CAB who were wheelchair users for that grant,” Morgan said. “However, they didn’t represent all the populations our lab serves. We needed to recruit people with a wider range of diagnoses, perspectives and insights who engage in physical activity. We also wanted diversity in terms of age, race and ethnicity to share different perspectives and life experiences.”
Morgan’s CAB consists of nine diverse members with various mobility disabilities. Expectations were set early for CAB members’ roles and responsibilities, and they agreed on operation procedures. “For example, it was important to them that meetings are hybrid due to potential mobility issues or health concerns. Meetings are held quarterly both in person and virtually. Having these options ensures good participation, and we’ve learned best practices by utilizing accessible Zoom features, sending materials ahead of time, recording meetings, and having a notetaker. It’s important to keep members engaged between meetings so the relationship remains strong between the CAB and the lab.”
A portion of Morgan’s research is conducted at the Stephen A. Orthwein Center at Paraquad, a community gym and adaptive rehabilitation center dedicated to enhancing independence in persons with disabilities. The CAB has provided helpful feedback during discussions to help processes or protocols, including recruitment. “We were doing OK with recruiting for a study, but it took, on average, 40 days from finding someone to enrolling them into the study. It was taking us too long to get the physician’s release. We went through the process with the CAB, and they told us, ‘Have the participant call their doctor. They have a relationship with the provider, and the approval may go faster.’ We took their advice. It didn’t solve this issue entirely, but it helped move the process along. They’ve also helped simplify forms by giving me a ‘reality check’ – Do I truly need to ask this question? What am I going to do with this data? The CAB helps me take a step back and not see things from just an exercise physiologist’s point of view so I’m not overcomplicating things.”
The CAB contributes throughout the entire research process including developing research questions, informing intervention design, providing input and feedback during the project, and contributing and partnering in dissemination efforts.
Currently, Morgan’s lab is focusing on data collection, but as the study progresses, the CAB is interested in helping develop a social media presence for the lab. “In the future, we will share with the CAB the study’s results so they can help us interpret the data and decide what information is meaningful to people with disabilities. They can also provide feedback on papers, posters and other communications,” Morgan said. “Part of the research process is qualitative work such as conducting semi-structured interviews or focus groups. The CAB is a built-in resource for that.”
For Morgan, the CAB’s most important role is its voice. “We need to be assured that anything we do is grounded in the voice and perspective of people with disabilities in our community. That is what our work is all about. We are fortunate to have a team that includes people with disabilities, but we need the voices of community members with lived experiences beyond ours to help our research evolve and make it meaningful. Being able to bring ideas to the CAB brings energy to the process. When they get excited about something, we get excited, and that invigorates everyone involved in our research projects.”
Participation, Environment and Performance Laboratory
Stark’s Participation, Environment and Performance Laboratory (PEPL) is dedicated to promoting the participation of older adults with functional limitations by providing intensive, tailored home modification interventions designed to enhance the performance of daily activities in the home. “Instead of tapping into an existing CAB, we wanted to form an advisory board of participants who have taken part in our research studies to represent the communities where we work and serve accurately,” Stark explained.
Community-dwelling older adults (aged 65 or over) from previous studies conducted by the lab were recruited to join the Participant Advisory Board (PAB). Fourteen older adults were initially recruited to join; most of these individuals were African American/Black women. PAB members provide a lived experience perspective.
“Our current PAB has 15 older adult members. Many live in underserved areas in St. Louis and aren’t typically involved in medical research apart from being in our studies,” Stark explained. “PAB members who belong to traditionally underrepresented groups in research, such as racial and ethnic minorities and people with a low income, assist us in improving recruitment strategies for underrepresented groups who may mistrust research, lack culturally sensitive opportunities to participate in research, or perceive high burdens involved with research participation, such as personal safety risks or overly burdensome time commitments.”
Members of the PAB advise Stark’s lab in several ways, one of which is informing them on study design and implementation to ensure these are best suited for older adults. They also advise on the interpretation of research results for dissemination and guide the lab in their communication and distribution to ensure that both older adults and underserved communities can easily understand them.
“Another way we incorporate the PAB’s input into our projects is by asking members to identify ways in which our study procedures, recruitment materials or interventions are or are not relevant to older adults from underrepresented backgrounds and suggest culturally sensitive revisions,” Stark explained.
Historical and systemic inequities in medical research and controversial, unethical research practices have occurred in St. Louis. Stark’s PAB is making vital contributions to changing the perceptions and paving the way for a new path forward.
“Our PAB has built trust, improved relationships and helped bridge the gap between the community and researchers. PAB members believe their participation contributes to research that has a direct and lasting positive impact on their communities. They also report an attitudinal shift from mistrust to value for the role of research in society, which means they are more likely to participate and help recruit for studies,” Stark shared.
Taking Meds Laboratory
The mission of Schwartz’s Taking Meds Laboratory is to enable adults with cardiovascular disease to better take their medications as prescribed through interdisciplinary, community-engaged research and training to inform best practices and policies.
Like the other labs, Schwartz’s lab began by recruiting people from their previous studies and working through existing WashU Medicine CAB networks. Sami Tayeb, MA, the lab’s clinical research coordinator, described their CAB’s composition: “We have almost as many CAB members – five – as we do lab members. We wanted people from different backgrounds and perspectives to give critical and impactful feedback on the research that we’re doing. We have a retired nurse, a retired pharmacy professor, a community health worker, a nonprofit director, and a truck driver, who brings a view outside of the health-care lens.”
Schwartz’s lab cooperatively developed a set of bylaws with their CAB to establish structure, expectations, guidelines and co-chairs. “The bylaws help unite the CAB and the lab members in our higher purpose to ‘make community health a priority.’ We are all here to contribute to that goal, and the CAB members understand that. Even when they disagree, they respectfully do so and listen to one another’s perspectives,” Schwartz said.
The CAB meets in person once a year, with other meetings occurring virtually bimonthly. They have assisted Schwartz and the lab on grant proposals, research papers, poster presentations and other projects by providing valuable feedback. “If we have issues during the grant proposal stage, we consult the CAB. When we get to the data dissemination stage, we share our output with them to make sure what we are communicating makes sense,” Schwartz explained. “The CAB holds us to account for how we think about race and ethnicity in our data, and it has changed how we analyze and think about data before we disseminate it. That type of feedback only makes our data stronger.”
The CAB has helped the lab with recruitment by advising on participant retention. “During one of our studies, we had difficulties contacting some participants. They either weren’t answering emails or phone calls or showing up for appointments. We asked the CAB for feedback on this issue,” Schwartz said. “This was during the fall, and the CAB pointed out it was a difficult time of year for people to commit due to the holidays, weather, and children being home from school. They also recommended text messages over emails and phone calls. We followed their advice and paused recruitment until after the new year and found we were more successful in our efforts.”
“For the same study, we were getting some ‘screen fails’ – this is when people passed our online screening but didn’t fully qualify for the study. We described the problem to the CAB and reviewed the screening questions with them,” Tayeb recalled. “They gave us feedback on wording to make the questions clearer. After making their suggested changes, we didn’t have any more issues with this.”
Tayeb also served as a panelist for the WashU Institute for Public Health’s Collaborative Café, a discussion network for researchers and community members interested in engaged health research and practice, for their series on CABs. “We value the CAB’s feedback, and what they say is valuable and worth listening to. We try to incorporate as much as we can and as much as the study will allow as a research team. We feel if they are telling us something, then it is important. We should do it,” Tayeb said.
*Source: healthdisparitiesresearchblog.mayo.edu/community-advisory-boards/
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