The use of digital storytelling and social media to engage a vulnerable population is part of the research frontier that is possible because of technology. It might change the way IRBs view human research, and it might make investigators of community members, one socio-behavioral scientist says.

“This issue gets to the core of the areas where IRB committees need to be retooled,” says Marty Otañez, PhD, assistant professor of the anthropology department at the University of Colorado Denver.

“Historically, some of this type of research would have been looked at as oral histories,” he explains.

But it’s more than that when researchers add a more robust set of research practices from collecting stories, including pre- and post-test surveys, semi-structured interviews, a survey of 200 young people, videographies, discussions with storytellers in public settings, and produce data systematically to analyze, Otañez says.

The study Otañez describes involved reproductive rights access for young pregnant or parenting teenagers.

Researchers worked with 26 young women in digital storytelling workshops in a high school with a classroom-based art therapist. Each woman made a short video about reproductive rights and access and healthcare issues. The idea was to use the videos to generate discussions with the women’s peers and with policy makers, Otañez says.

The study’s stated goal was to stimulate youth development through an innovative use of digital technology promoting positive sexual and reproductive health outcomes for Latina teens in Colorado.

“We want to increase the discussion around these difficult issues that young women face who are pregnant and from marginalized communities and to also understand women of strength and counter the stereotypes that work against these women in their daily lives,” Otañez says.

While some people in human research protection might argue that this type of work is more community-based projects than research, Otañez disagrees.

Everything involving the project is research in the sense that it is approved by the human subjects committee and is designed to promote generalizable knowledge and further the notion of digital storytelling as a method for community engagement, he says.

“The specific process I subscribe to and use is creating a space where individuals from the community create and share their own stories, as opposed to scholars making stories about them,” Otañez explains.

“The story circle is a process: people in the community, with a few facilitators, share their stories, and these are not usually public,” Otañez says. “They’re a way to collect data.”

In Otañez’ digital storytelling research, the young women share their stories publicly online through their videos. The University of Colorado has a Web page titled, “Teen Moms Talk Back.” Links to some of the young women’s videos are on the page. The page can be found at http://teenmomstalkback.ucdenver.edu.

Since the research uses social media platforms, especially YouTube, a key issue from an IRB perspective is how social media is used for communication between the study participants and for communication to the public, Otañez says.

“The videos are used to communicate to the general public about the women’s stories and to create safe places to talk about these issues and to counter stereotypes of pregnant and parenting young women,” he adds.

The idea that these women are considered part of a vulnerable population because of their age is an outdated legacy that IRBs need to change, Otañez suggests.

“These young women are parenting at age 14,” he says. “They grow up faster and are using social media in ways that are new and uncertain, and they shouldn’t be treated in a patronizing or paternalistic way.”

From an IRB’s perspective, this type of research is tricky, he notes.

“There needs to be some retooling because of the fast pace of social media and how it’s changed society and is being used by younger people,” Otañez adds.

The end result of this type of research is not just publication and evidence-based research, but the process of developing relationships with community members so these young mothers can one day do their own research, Otañez says.

He envisions a time when research isn’t conducted only by academic or medical professionals and when community members can be trained to design their own studies.

“When I go into a community project we come in with a proposal,” he explains. “Once these are done, they’re intended to give [the participants] a set of skills, contacts, and confidence so they can design their own projects.”

Someday, the teenage mothers and other communities like theirs might become researchers who share stories, findings, and knowledge with academics and professionals, so scholars and researchers will better understand the community’s needs and desires, he adds.

“This is an innovation in research,” Otañez says. “We’re fine-tuning things so the members of the IRB have the knowledge and skills to not create obstacles for researchers who do community-driven work, where people are working in partnership to conduct research.”

Before members of a community could become researchers, they would need to follow all training and other requirements. For instance, when researchers set up the young Latina mothers’ study, they had an art therapist, who was enlisted to work with the teens on their videos, go through appropriate training to be a co-researcher on the project, he notes.

“She is a staff member of the Florence Crittenton Services and a certified teacher,” he says. “In the future, one of the tangibles could be that these young women, who could do their own research project, would have to go through all the human research protection program training.”

The benefits of research involving members of a stereotyped community and using social media are clear, Otañez says.

“The design and intent of the research are to promote health equities and also the scholarship, knowledge production, and increased space for non-academics to participate directly,” Otañez explains. “This research increases the capacity of community members to take control of processes they’ve typically been subjects of, and it helps us promote innovative knowledge, evidence-based research, and also serve the communities where we’re located.”