ROCHESTER — Nestor Bernier would like to say that his motives for participating in clinical trials have been completely altruistic.
But he openly admits that the monetary stipends he receives have been the true incentive, Bernier said during an interview March 30. Whatever one’s motive, however, the Puerto Rico native added that an initiative led by the University of Rochester Medical Center to recruit more minorities to participate in clinical trials is a worthwhile effort.
“I’m a humanitarian, and I want things to be all good,” said Bernier, a locksmith at the Finger Lakes Development Disabilities Services Office. “But, ‘What’s in it for me?’ is how the average person looks at it.”
Officials from the university’s Center for Community Health announced their initiative last month. They said that they hope to boost clinical-trial participation by underrepresented minority groups as a way to better reflect the community and improve its overall health.
“If a study population is only white men, which it typically is, you really won’t know whether your results are applicable to African-American women or men or other groups,” said Dr. Nancy Bennett, director of the Center for Community Health. “It’s critical that the population participating in a study be fully representative of the population that you hope to use the knowledge with.”
Gwenn Voelckers, the center’s director of health communications, said there are about 1,000 studies going on at any given time. About 200 trials are under way that do rely on involvement from the general public, she added.
According to the center’s Web site, www.healthresearch.urmc.edu, these trials study cancer, heart disease, Alzheimer’s, asthma, arthritis and dozens of other conditions. Bennett said that having more minorities involved in such studies as those related to heart disease, high blood pressure and diabetes would offer better results.
“Without adequate representation of ethnic and racial minorities and other underserved populations in clinical trials, patients suffer and so do researchers, who are hindered in their assessment and generalization of clinical trial results,” Armin Weinberg, Ph.D., director of the Chronic Disease Prevention and Control Research Center at Baylor College of Medicine and cofounder of the Intercultural Cancer Council, said in an article at www.omhrc.gov/templates/content.aspx?ID=5046.
The Intercultural Cancer Council also found that 88.8 percent of people enrolled in clinical trials between January 2003 and June 2005 were white, 8 percent were African-Americans and 5.6 percent were Hispanics.
The Center for Community Health aims to change those kinds of statistics with the help of its newly designed Web site, Bennett said. The site is part of an overall community-engagement initiative funded through a $200,000 grant from the Clinical and Translational Science Institute, she said.
The university also has created a public-awareness print-advertisement campaign, as well as public-service announcements for radio and television that were produced by WXXI, which donated its services, Voelckers said. The Center for Community Health also has a “Healthy Living” library with materials, including DVDs, about various health topics, she added.
It was through print materials that Bernier, 53, first learned about the trials that he initially participated in. He suggested that similar fliers announcing upcoming trials should be placed in health centers frequented by minorities.
Bennett said that through the initiative more print materials would be made available to the community. She also noted that the university knows it needs to expand its Spanish resource materials and staff of bilingual recruiters to increase Latino participation in clinical trials and help them better understand how trials work.
“There’s a stigma attached to research that you’re liable to contract whatever it is they’re studying,” Bernier remarked.
Based on focus groups and interviews conducted by the university, a lack of information does create misconceptions about how trials are conducted and the safety of participants, Bennett noted. Time, transportation, child care and other logistical considerations also are barriers to increased participation, she added. Research by the U.S. Department of Health’s Office of Minority Health also found that low literacy, cost or lack of health insurance, a lack of awareness and invitation, language differences, and mistrust create barriers.
“There’s a lot we need to change internally about the way we do business,” Bennett said. “That’s as simple as speaking Spanish, to as complicated as rethinking the way a study is designed so it’s more acceptable to the community and is culturally appropriate. … We’ve established good partnerships with the community so we can move forward.”
The review boards that evaluate trials also by law must include community members to further ensure public oversight, Bennett said.
“What we learned … is that the general public does not have a lot of information about how we protect the safety of participants in a trial,” she said. “Trials are very heavily scrutinized by lots of different people.”
Bernier called his recently completed participation in a liver-medication trial a “no-lose” situation, as he had been lined up to receive the treatment because of a current medical condition that he declined to discuss in detail. He did, however, suffer adverse side effects from the medication, including flu-like symptoms, for the first several weeks of the trial, he said. Such side effects — or the required commitment of taking daily pills and having weekly injections — may deter people from participating, he said.
“It was pretty intense,” he said of taking part in the trial.
But both Bernier and Bennett also pointed out that the constant monitoring of participants’ health during trials is an added benefit.
“They do give you a physical, do blood work to make sure it’s (the medication used in the trials) not going to hurt you,” Bernier said.
“Many things are checked on and tested much more often than in a nontrial situation,” Bennett noted. “So actually you can really benefit from trials, you can get the latest treatment.”
EDITOR’S NOTE: For more information about the Center for Community Health’s initiative, call 585-224-3050. Its Healthy Living library is located at the center, 46 Prince St., Rochester.