Town hall meetings draw community into research
'We were rather astounded.'
A project in Nashville, TN, to engage the community in cancer clinical trials has borne more fruit than its organizers had initially hoped.
Using an NCI-funded grant, Vanderbilt Ingram Cancer Center and its academic and community partners held a series of town hall meetings aimed at expanding awareness of cancer research among underrepresented groups.
From those meetings, organizers hoped to glean the names of about a dozen people who might be interested in going further, participating in educational programs or even volunteering to serve on a community advisory board or as community members of the institutions' IRBs.
"Of the 96 people who attended the focus meetings, 49 of them indicated at the end of the meetings that they wanted to continue to work with us in some capacity," says Debra Wujcik, RN, PhD, director of clinical trials at Meharry Medical College, an historically black institution that is one of Vanderbilt's academic partners in the project.
"We were rather astounded," Wujcik says. "I think that definitely indicates the interest in learning more about clinical trials and how people can help with that."
Goals have been expanded
The project was funded by a 2009 grant from Communities as Partners in Cancer Clinical Trials, an initiative aimed at finding innovative ways to include the public in every stage of the clinical trials process.
But the Vanderbilt team has since expanded its goals, using institutional funding to educate interested community members so that they can go into their communities and continue the process of engagement.
"It wasn't something that we were thinking was going to be a long-term project," Wujcik says. "But because of the clear interest in the community, we realized that this is a really good opportunity for us to extend our reach, to meet our community's needs, and to partner with the community.
"We now see it as an ongoing initiative."
The academic institutions worked with community partners including the Nashville NAACP Health Committee, the Nashville Latino Health Coalition, and the Nashville Health Disparities Coalition to conduct the town hall meetings.
Wujcik says most of those who attended had had some experience with cancer either their own or that of someone close to them.
"We started each of the town hall meetings asking people 'What has been your experience with cancer?' and almost everyone had a story to tell," she says. "Some of them were stories with positive, curative endings, and in a lot of them, the person they knew had died.
"It seemed to be fairly cathartic to start the meetings that way. The people wanted that opportunity to tell their stories and once they could, they were able to move on and help us think through the issues."
Wujcik's group asked participants whether they were familiar with cancer clinical trials, whether they knew anyone who had participated in a trial, and what might keep them from participating.
She says about a third of the people there had had some prior experience with research, although most of it was not cancer research. Most indicated that their research experience had been positive.
The group may not have been directly representative of their communities on the whole, Wujcik says, the attendees had a higher level of education but they were familiar with the fear and trust issues that affect minority participation in research.
"Certainly the older participants expressed more of the concerns regarding, say, the history of [the Tuskegee syphilis experiments] and fear of research," she says. "What was encouraging was that the younger people in the group, those in their 20s and 30s, did seem to be more aware of research and more open to research. And the older participants listened to them and trusted the younger generation to give them the information they would need if they were diagnosed with cancer."
Moving forward
At the end of the meetings, Wujcik's group held a "celebration meeting" where they summarized the results of what they found with the community members who had participated. This is an important part of community engagement, she says; researchers should validate their results with the community and make sure they're representing them accurately.
IRB members were present to hear the findings and to speak to the group about potentially serving on an advisory board or IRB. Wujcik says several people specifically indicated that they might be interesting in serving in that capacity.
The advisory board hasn't been formed Wujcik says her group is still trying to figure what such a board might do and who it would work with but the initiative is moving forward with two other projects:
Wujcik and a student have conducted in-depth interviews with eight of the participants to delve more deeply into the fear and trust issues. She's currently analyzing those interviews.
Her group has begun Partnerships to Educate and Engage in Research (PEER), which pairs participants with health care providers and educators. They are using a curriculum developed to educate the community about cancer research and are tailoring it to the individual Nashville communities the group is trying to reach.
Once the community members are satisfied with the curriculum, they'll have training in how to deliver the message and answer questions about clinical trials. They'll be charged with planning four presentations in their communities. Wujcik expects these presentations to take place over the next year.
Wujcik says that an institution wanting to mount a project such as this one needs to either have existing ties with community organizations or take the time necessary to develop them. She advises beginning with a focus group methodology.
"That's the opportunity to have the dialogue, to understand what the issues are, and what the concerns of the community are," she says. "As researchers, we tend to decide what the problem is and then study things that we are interested in and can get funded. But community engaged research flip-flops that. You have to get into the community and understand what their concerns are."
A project in Nashville, TN, to engage the community in cancer clinical trials has borne more fruit than its organizers had initially hoped.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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