Building our Capacity with Community Engaged Research (CEnR)
July 13th marked the first meeting of the new operating year for IWES’ community Institutional Review Board (IRB). “What is an IRB,” you may ask. An IRB is an ethics committee that protects the privacy, rights, and well-being of people participating in research studies. At minimum, the Board is a group of five people that bring together best practices in research inside and out of the “sciences.” It’s made up of stakeholders that can speak to community fit and a chairperson to keep everything moving along.
Among other “rules,” traditionally, IRBs are housed in universities and are especially concerned with making sure that research designs are sound, the opportunity to participate is equitable, risks to people participating are reasonable and that those choosing to participate can fully consent. These criteria are all extremely important, but not necessarily enough to reflect the complex, community-centered needs of research conducted by grassroots organizations like IWES. Our work combines the direct delivery of public health services as well as training, capacity building and advocacy with community engaged research (CEnR), which refers to a cooperative research approach that brings together researchers and community organizations and agencies as collaborating partners at every stage of the process.
While conducting research, we strive to uphold our mission to improve holistic health and quality of life for women, their families, and communities. As such, our IRB reviews the work of our research and evaluation department and advises us equally on both how to comply ethically and create projects that benefit our community. We put a lot of care and consideration into determining how risks and benefits are balanced (not just for individuals, but the community, too), preserving privacy and confidentiality when community members may be (and often are) part of the research team, building the capacity of our community to engage as actors in research and ensuring both findings and lessons learned are shared back to the community in accessible ways. We’ve made sure this is possible by intentionally recruiting members of the community at large to serve on the IRB. Our members’ professions reflect the spectrum of IWES’ work—public health, participatory research, education, health and wellness, community organizing, etc.—and their identities reflect the diversity of the identities and demographics of our community, including youth. Our members’ experiences combine incredible legacies of service with IWES’ own clientele, including special populations such as people living with behavioral and physical comorbidities, and even systems-involved youth (youth that have been incarcerated or been in foster care). Our Board is incredibly well-suited to advise on not just the methodology of our research and evaluation efforts, but also—even more importantly one might say—the practicality and equity of the work.
Over the last 6 months, IWES staff conducted an assessment of the motivations, satisfaction, and future hopes of our IRB members. Incredibly, our active Board all reported that an “interest in supporting IWES' work” was among their main reasons for serving on the Board, and they also reported a high level of satisfaction with their own Board service to date. This is remarkable, especially as the Board operated remotely over the last 15 months. Several members spoke of their desire to return to in-person convenings and conversations when it is safe to do so, especially for the opportunity to connect and build community amongst one another.
In future, our members would like to see:
The IRB continue to support staff’s capacity to design and implement rigorous research;
Our Board members’ skills and tools enhanced to better uphold our unique vision; and,
Trainings on research ethics, research justice and access to these kinds of reviews expanded to our community at large.
As shared by one of our interviewees,
“with IWES...you always start with, ‘What are the needs of the community? And how can we best meet them? And how will this research move though getting those needs met possible?’”