Piggyback on another group's trust-building
Right timing, right population helped
Pennsylvania investigators who desired to learn more about youth obesity and diabetes in rural West Virginia found they could benefit from the community's trust in a separate institution's long-term education project for poor adolescents.
The rural Appalachian obesity research took place more than a decade after a visionary woman moved to West Virginia and decided to help the state's poorest counties send the most highly motivated of their poorest children to college.
"A woman named Dr. Ann Chester created a network of science clubs for high school students to attend in the after-school hours," says Robert Branch, MD, professor of medicine and pharmacology and director for the center for clinical pharmacology at the University of Pittsburgh in Pittsburgh, PA.
Chester is an assistant vice president for health sciences for social justice at the Robert C. Byrd Health Sciences Center of West Virginia University in Morgantown, WV.
The clubs were small, containing no more than 10 children and one high school teacher who served as a mentor. Their three main components included having the children attend a summer camp on the West Virginia University campus, attending a weekly meeting during the school term, and doing a science project which would be presented at the end of the year, Branch explains.
"The first pilot project was targeted to some really rural places, and it was outstandingly successful," he says.
The program went through growing pains but eventually met its goals of sending these Appalachian students to college. The state even began to fund the program and provide free in-state tuition to students who completed all requirements, Branch says.
Researchers have benefited from this community-university foundation. Branch met with students in the science clubs and convinced them to assist investigators with a study on obesity and diabetes in their communities.1
The youths became fledgling research assistants who were trained to collect data, visiting families in their areas.
"We had 210 students and their mentors, who were high school teachers, who were trained and credentialed to do research," Branch says.
"Eighteen-year-old enthusiasts can actually get a lot done," he says. "They started doing little projects, and each group has its own particular project in addition to the main part of the questionnaire."
What also made this model work well was that the potential study participants were the very youths who were recruited to assist with the research. Half of the children and youth in the community were obese, and the young research assistants mirrored their community statistics.
"They identified with the topic and it was relevant to them," Branch says. "It was a study topic they had been thinking about in their own families and were having problems with themselves."
This connection between the youths, their community, and the study topic resulted in successful study recruitment in a fairly short time period.
"I think there was an element of good organization, and an element of luck and an element of timing," Branch says. "The students were very receptive to learning and to sharing information with their families."
Because of the earlier community work, the outside investigators easily were able to obtain parental consent and the students' assent, and the youth research assistants were able to obtain completed questionnaires from more than 140 rural Appalachian families within a nine month period, Branch says.
Also, the students participated in projects that tackled childhood obesity, including speaking with school administrators about changing school diets.
"It started out with the questionnaire, but expanded to seed projects to see what was acceptable locally," Branch explains.
"We've also gone out and done some focus group research, asking questions of kids and kids' parents," he adds. "One of the next things we're planning to do is start looking at the genetics of these families, so we asked the students if they'd like to know more about genetics and genetics research within their own families."
The students have expressed considerable enthusiasm for this idea, and so the project will begin once government grant funding is obtained, he says.
"We're just trying to show right now that we can get these students to collect data," he adds. "We're teaching them to do fingersticks and to test blood pressure, moving away from questionnaire-type research to minimally-invasive research."
These activities will take place in people's homes as much as is possible. The high school students theoretically could even collect saliva with collection kits made for genetics research. But they can't do a blood lipid profile, Branch notes.
"We'd have to bring people down to clubhouses for that," he adds. "We're taking this one step at a time, teaching the students how to do these minimally-invasive procedures, giving them a glucometer and sphygmomanometer and teaching them how to use it."
The students bring these to study participants' homes and teach the families how to use them so they can track their own glucose levels and blood pressure readings.
This is a bottom-up approach to health care research, and so far it's been working well.
Typically this type of research requires investigators to spend months or years building community trust and even longer to maintain that trust over the course of a study, he notes.
"I was lucky to take some ideas and hook them on top of an existing structure that was very well organized and right there in the community," Branch adds.
Reference
- Branch R, Chester A. Community-based participatory clinical research in obesity by adolescents: pipeline for researchers in the future. Clin Transl Sci. 2009;2(5):350-354.
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