A new social-behavioral research model IRBs might encounter is one in which researchers include people who also could be participants, or their guardians, for the same studies.
Here’s an example: a middle-aged woman has a special needs child. She collaborates with a team of pediatricians, music therapists, neurologists, and epidemiologists to pursue a small business innovative research (SBIR) grant to create a music intervention mobile application for autistic children.
The intervention, which is aimed at reducing agitation and increasing speech, will be part of a study.
“One of the tenets of community-based participatory research [CBPR] is that no one knows better what the issues are in a community than community members,” says Goldie Komaie, PhD, supervisor of public health research at Washington University School of Medicine in St. Louis.
The university has a community research fellows training program that provides 15 weeks of training, based on master of public health curriculum. It enhances the capacity for CBPR, Komaie says.
The training program has a broad spectrum of topics offered, including research ethics, human subjects training and certification, and how to conduct CBPR.
“The purpose is to train community members to become good consumers of research,” Komaie says.
Those taking the course will be able to pick up a journal article and understand how to use the information to benefit their own communities, she adds.
“Another program goal is to understand how to use research as a tool to improve health outcomes in their communities and to help them understand how to work with academic researchers,” Komaie says.
The program involves 15 sessions. Each week, a different faculty member leads the class. Some instructors are from the university, and others are from local community-based organizations. More than 100 fellows have graduated from the program, receiving a human subjects protection certificate. They can participate in academic research projects and serve on community advisory boards, she says.
“Some have college degrees, master’s degrees, but it’s been a long time since they’ve been to school, so this program is a refresher for some,” Komaie says. “For others, it’s new information.”
Once trained, the fellows can work on pilot CBPR projects, forming groups of two to four people, paired with academic mentors. “These are submitted to the IRB, and we add community members as research team members,” she says.
CBPR benefits from having community members on the research team, she notes.
“They know the topics and some of the problems better than anyone else,” Komaie says. “When academic researchers come up with project ideas, I think community members can give feedback and input on why it would work.”
A community-based research project is stronger when both academic and community groups are brought together. Community members can help trained researchers answer questions about what might work in recruitment and which aspects of a study might raise ethical concerns among the target population.
Sometimes, the fellows start their own pilot projects. For instance, in 2015, the Grassroots Community Foundation wanted to fund a pilot project about women and girls, so a group of four fellows applied for, and received, a $1,000 grant for a project to study mental health among unemployed African-American mothers. The group recruited and enrolled participants, working closely with academic mentors. They designed a brief intervention that included having participants watch a video on coping skills and how to recognize stress, and they conducted a post-survey, as well as follow-up telephone interviews with the participants, Komaie says.
Community-based participatory research is a priority because its framework is a great way to build trust with underserved populations, she adds.