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IRBs working with community partners on non-medical studies need fresh tools, such as resourcefulness and imagination, when engaging in training and education.
Popular existing models fall short, some experts say.
"We’ve known for some time there have been problems with the training we provide to our community collaborators," says Ryan Spellecy, PhD, an associate professor of bioethics and medical humanities and psychiatry and behavioral medicine at the Center for Bioethics and Medical Humanities, Institute for Health and Society, Medical College of Wisconsin in Milwaukee.
"These collaborators typically are people at community organizations, which could be outreach programs or community groups like the YMCA or veterans groups that are engaged in community research and want to be partners in research endeavors," says Spellecy, who also is an IRB chair.
Many research organizations use online training programs because they’re affordable and convenient, but they might not work as well for community partners’ specific needs, Spellecy says.
Community partners can have difficulty with such programs because they may not be as computer-savvy as investigators, and those programs may not capture some of the salient issues in community-based research, he explains.
Because online human research protection education programs’ methods and content do not fit every need, some creativity was needed to find a solution for community partners, says Stephanie Solomon, PhD, an assistant professor at Saint Louis University.
Solomon helped launch a new training program that is geared toward the reality of community partners’ needs and knowledge.
The community partners training program recently was piloted and results are being published in a series of papers, including a recent one in the journal Clinical and Translational Science. The pilot project showed significant, positive changes in mean knowledge scores from the pre-test to post-test.1
"While working at the University of Michigan as a post-doc in research ethics and community engagement, I worked with community engagement liaisons who worked with community partners," Solomon says. "We embarked on creating this training that would be applicable and recognizable by local IRBs and offers something that makes sense to the reality of community ethics."
For instance, the vocabulary in an IRB biomedical research world could be interpreted differently in the context of community-based research. "Vulnerability," "inducement," and "conflicts of interest" are examples of words that could be seen differently, depending on the research context.
"With conflicts of interest in a community setting, it could relate to community organizations that provide services to people who also are in their research," Solomon explains. "Or they could be recruiting a research participant who asks the organization to do something in the study that violates the protocol, but is part of the organization’s service."
Other examples of conflict of interest include a community or religious leader who is a powerful community persuader and might convince people to participate in a study whether or not they are comfortable doing so, she says. (See story on tips for training community partners, page 63.)
The community partner training is done both electronically and with one-day sessions.
An academic leader and community partner lead training, Spellecy says.
"We had videos and written materials and covered a number of units over the course of a day," he adds.
"We also received permission from the human research protection office that this course would count as responsible conduct training, so community partners didn’t have to do the CITI course on top of it, and that was a benefit," Spellecy says.
Qualitative feedback from participants and facilitators suggests the hands-on nature of the training sessions worked well, Solomon says.
"We worked hard to take adult learning theory into account," she says. "People needed practical, hands-on training."
Community partner training should be flexible and adaptable to work for all organizations, she notes.
"We designed the training with two things in mind: Each site had to do some things the same for measurement purposes, but we left room for some information to be varied, depending on the context," Solomon says. "This type of training requires more leadership skills."
The goal is to have the audience apply the concepts that are taught in their own individual context.
"It seemed people really responded to that," Solomon says.
One of the next challenges will be to turn this pilot training program into a model that could be used by other organizations partnering with community groups.
It requires an institutional-level commitment to work long-term, he adds.
"We are not alone in recognizing that there is a difference in face-to-face, responsible research training," Spellecy says. "Certain categories of grants have been revised, and they say that eight hours of face-to-face training are needed; it’s no longer sufficient to rely on an online model."
So the community partner training would help meet this type of requirement. Its program is tailored to the kind of research the community partner does, he adds.