Building Bridges: Researchers Link to Community

On a blustery afternoon in October, Charles Kamen, Ph.D., and Matt Asare, Ph.D., could be found at Mary’s Place Refugee Outreach Center, helping a group of women from Bhutan, Nepal, and Somalia read a map of the city of Rochester. The women take part in classes, receive donations of food and clothing, and learn how to get on the path to citizenship with help from Mary’s Place.

While Asare’s and Kamen’s immediate task was to help tutor the refugees in English, their long-term goal was to build a bridge—one that starts at the University of Rochester Medical Center and the Wilmot Cancer Institute and extends into new and unfamiliar communities.

As researchers in Wilmot’s Cancer Control and Survivorship Program, Kamen and Asare have been focusing on the best ways to deliver clinical trials to underserved patients and minorities, and to educate cancer patients everywhere about clinical research.  Their goal is to design studies that are accessible to people in all types of communities, from center cities to rural outposts.

“What we’ve found is that we can design studies very well but the ‘community’ piece is a lot more difficult,” Kamen says. “We’re trying to figure out how to modify studies to make sure everyone who wants access has access.”

Most cancer patients learn about clinical trials through their physicians. But a lot of opportunity for education exists outside of doctor’s offices.

As a starting point, Kamen conducted a pilot research project with the objective of pushing Wilmot research coordinators into areas that are often underserved by the health care system. The project is titled the Minority/Underserved Research, Action, and Learning (MURAL) program. Eight research staff members agreed to take part. They reached out to African Americans, Latinos, the LBGTQ community, older adults, and adolescent cancer survivors.

 “We wanted the research coordinators, who are on the front lines, to be able to sit down with someone who didn’t look like them and might have a different cultural background, but still be able to help them understand a clinical trial,” Kamen says.

That’s how Sandy Plumb, a research program manager at the UR, met Annette Jimenez, a writer for the local Spanish-language newspaper, El Mensajero Catolico. They talked about diversity and health care barriers such as communication and transportation; and then Jimenez wrote a newspaper story about Kamen’s and Plumb’s goal to educate local Latino groups about clinical studies.

Other research coordinators linked up with the Women of Color club at Gilda’s Club and Out and Equal NY Finger lakes, an organization associated with the Gay Alliance that supports safe and inclusive workplace environments. The team was well received when it set up an informational table at the annual ROC Pride Fest.

“If you really look into the community you can find events, organizations, and plenty of places to showcase what Wilmot is doing,” Kamen says. “People have been really appreciative that we’re bringing information to them.”

Anne Tischer, coordinator for a Gay Alliance-associated program called SAGE (Services and Advocacy for GLBT Elders), couldn’t agree more. Kamen presented information directly to 35 SAGE members at a luncheon, and they ended up having a “very lively and smart discussion” about clinical trials, cancer, and Wilmot, she says. SAGE is open to anyone but tends to serve people ages 50 and older.

“Ours is a community that responds to direct, face-to-face outreach,” Tischer says, noting that because the LGBT community has for years been labeled “at risk,” its members tend to avoid doctors and therefore have significant levels of chronic disease. Sometimes they also lack traditional family and church support, which creates the need for new safety networks.

“Everybody knows somebody that has cancer,” Tischer says, “and knowing about options is important.” Kamen also talked to the group about prevention factors and relayed the basic message that information is empowering. 

Word-of-mouth about the outreach efforts are starting to pay off. Kamen received a call from an out-of-town cancer patient, for example, who heard about his diversity initiative in Rochester.  And Gilda’s Club is more likely to pass along information about Wilmot’s clinical trials if the members have been approached and educated directly by researchers, Kamen says.

“You can’t just dip your toe in and then jump out,” he says. “This must be a sustained effort and it will take some time.”

New Directions

Another bridge is being built, too, but this one is within the URMC: It links Wilmot more closely to the Center for Community Health. Led by Nancy Bennett, M.D., M.S., the Center for years has been connecting with community partners to address health concerns, improve access to care, and encourage healthy lifestyles to prevent disease.

Going forward, Bennett says, the Center will become the “cancer prevention” arm of Wilmot.

For example, Bennett and Candice Lucas, director of the Cancer Services Program of Monroe County at the Center for Community Health, plan to bring services to promote education about cancer prevention and risk reduction into rural communities in the Finger Lakes region where Wilmot has satellite treatment centers.

They’re already spreading the cancer-prevention message through collaborations with the Livingston County Health Department and at Dansville, N.Y.-based Noyes Health, which is affiliated with UR Medicine. Encouraging more exercise and reading food labels are two examples of what they preach. The Center’s research shows that the best approach is to focus on permanent lifestyle changes that improve health.

New research directions, Bennett says, include finding out how to implement the Center’s successful diabetes prevention program—which is essentially a cancer-prevention program because it emphasizes physical activity, no smoking, and proper nutrition—into the general population. Another research project will be to find the best ways to encourage people to take part in early-detection cancer screenings.

“Primary cancer prevention is still a challenge,” Bennett says. “Although we have solid evidence that many cancers are preventable by not smoking and maintaining a healthy weight, science is just not where it needs to be. Our health care system was predominantly built on providing treatment and very little has been spent on disease prevention or prevention research. So there’s a lot of room for change.