The Community Advisory Board for Clinical Research is made up of Bay Area residents who can provide insights and advice to investigators on recruiting study participants from a broad range of ethnicities, cultures, ages and economic backgrounds.
October 6, 2016 - By Ruth Schechter
Ryan Matlow, PhD, a Stanford instructor of psychiatry and behavioral sciences, was conducting a study on mental health education and interventions in local school districts. But getting children to participate in the three-year project, as well as retaining them, was becoming a challenge. He also was having trouble developing a way to keep numerous administrators, teachers and families up to date on his study’s progress.
So Matlow decided to present his study to the Community Advisory Board for Clinical Research for feedback and guidance.
“The board had some really good ideas on engagement and retainment, and gave me some specific recommendations on how to manage the multiple partnerships of the project,” he said. “Presenting to an impartial audience also helped confirm to me that my basic approach was on the right track.”
Help reaching diverse participants
The board is made up of 23 Bay Area residents from diverse backgrounds and communities who are involved in health care, education, law, public service, community groups, business and religious organizations. Its goal is to provide insights and advice to Stanford investigators on recruiting study participants from a broad range of ethnicities, cultures, ages and economic backgrounds. The board also offers advice on ways to appeal to those who might not normally sign up for a research study.
Research has shown that gender, ethnicity and lifestyle play a role in incidences of certain diseases and health-related events. While research studies are designed to develop new protocols or gain insights into medical conditions, minority populations tend to be underrepresented in them, and researchers often struggle to find ways to recruit members from these groups.
“The board acts as a bridge between Stanford and the community, helping researchers be more responsive to the kinds of questions and concerns the public may have,” said Judith Prochaska, PhD, MPH, associate professor of medicine in the Stanford Prevention Research Center and the board’s faculty co-chair. “It’s a partnership to help researchers inform their science to meet community needs. CAB members are able to share their perspectives, and researchers receive guidance on ways to improve protocols, design and recruitment.”
The board was established in March by the Stanford Center for Clinical Research, in partnership with the Office of Community Engagement in the Stanford Center for Population Health Sciences. The board is one of only a handful of such enterprises in the country focused on clinical research engagement in the community. Members were carefully screened and received training in research fundamentals, as well as their roles and responsibilities for their volunteer service.
“Researchers often struggle to engage diverse communities in their project. The solution is to encourage them to participate as partners, which also means going back to them with results or resources,” said board member Nancy Brown, PhD, a clinical investigator and education projects manager at the Palo Alto Medical Foundation. “The idea here is to bring together different people to share different perspectives. It’s a resource to help researchers think about their stakeholders so both parties get what they need.”
At one recent presentation, for example, board members suggested that a research team include more detail about its methodology. After further discussion they recommended including incentives for children to make them feel more involved in the research, providing travel vouchers to help with transportation costs and creating video testimonials for a registration website. At another session, the board pointed out ways to create a feedback loop to encourage a sense of teamwork for members of the community.
“CAB is a resource for investigators,” Prochaska said. “Study design involves all phases, from concept to dissemination. Refinements can be incorporated at any stage.”
Investigators are asked to provide a project overview to board members in advance of meetings and discuss their current strategy and concerns during their presentations, which are followed by extensive question-and-answer sessions. Currently, researchers in most clinical fields and at any stage of development are welcome to submit their study for board review. They’re under no obligation to incorporate the board suggestions. (Cancer protocols are excluded because of the deep resources available through the Cancer Clinical Trials Office.)
Prochaska said the process is an important step not only for refining recruitment methods and incentives for reaching specific populations but also for strengthening grant submissions since funders often look for community partnerships.
Board member Ngoc Nguyen, a San Francisco health journalist, said she thought the investigators have found the group’s suggestions helpful and appreciated the input. “Health interventions come from research,” she said. “Identifying relevant interventions requires asking questions that make connections so more people will benefit. The process is just as meaningful as the results.”
Many of the board members are well-connected in their community and can network to help publicize research recruitment efforts. “The goal is to get away from the standard population sample,” Brown said. “We understand how difficult it is to get people to participate in a study, and we really want to help.”
Prochaska and the board co-chairs plan to evaluate the board’s role on a regular basis, using feedback from both researchers and board members after each session, and surveying presenters to determine what kind of feedback would best aid their projects.
In the meantime, Matlow has incorporated some of the board’s suggestions on how to better coordinate the multiple administrators, schoolteachers and families involved in his three-year research project.
“They’re the perfect group to go to, and they are a great resource for Stanford Medicine researchers,” he said. “It’s a neutral and confidential setting to process how to manage some of the complexities of designing and refining a research project. And there’s a foundation there if I want to go back.”
The board is scheduled to meet six times in 2017. More information is available on the Stanford Center for Clinical Research website.
Stanford Medicine integrates research, medical education and health care at its three institutions - Stanford University School of Medicine, Stanford Health Care (formerly Stanford Hospital & Clinics), and Lucile Packard Children's Hospital Stanford. For more information, please visit the Office of Communication & Public Affairs site at http://mednews.stanford.edu.