Health researchers urged to make community a full partner in efforts

July 25, 1993|By Kurt Kleiner | Kurt Kleiner,Contributing Writer

BETHESDA -- A Johns Hopkins researcher and an East Baltimore pastor say that scientists should make community members full partners if they want to encourage blacks and other minorities to participate in health studies.

Diane Becker, director of the Johns Hopkins Center for Health Promotion, and the Rev. Melvin B. Tuggle, pastor of the Garden of Prayer Baptist Church on Carswell Street, gave the advice during a conference this month at the National Institutes of Health in Bethesda.

Conference participants discussed the need to broaden clinical studies, which often have been limited to white men. The session explored ways researchers can recruit women and minorities so that their health conditions will be understood better.

The NIH Revitalization Act, co-sponsored by Sen. Barbara Mikulski, a Maryland Democrat, and signed into law by President Clinton June 10, requires researchers who receive NIH grants to include women and minorities in their studies unless there is a good scientific reason to exclude them. The law strengthens NIH rules that have been in place since 1990.

View of researchers

Researchers counter that it's often hard to include women because they tend to have more demands on their time, especially if they have children, and often hold jobs with inflexible hours that make it hard to get to the study site.

Blacks often are suspicious of researchers, speakers said, especially in light of the infamous Tuskegee Study, a U.S. Public Health Service project starting in 1932 that left black men with syphilis untreated so that researchers could study the course of the disease.

Dr. Becker said she knew that she would need community support in 1990, when she began to study ways to persuade blacks to stop smoking.

She found a partner in Clergy United for Renewal in East Baltimore, a religious coalition.

Together they formed Heart, Body and Soul, which today employs 60 people, most of them living in the neighborhood. The employees include doctors, nurses, and outreach workers who go door-to-door educating people on the consequences of smoking and poor diet.

Mr. Tuggle, who is chairman of Heart, Body and Soul, said he was suspicious when Dr. Becker approached him.

"There was a lack of trust in the workings of the institution. . . . Most of what I knew came from the operation of the emergency room. The service the community received there was sometimes inhumane," he said.

East Baltimore residents who had endured 12-hour waiting periods for treatment and then been snapped at by overworked nurses and doctors resented Hopkins, Mr. Tuggle said. He was one of them, he said.

Speaking of himself in the third person, he said: "When we started out some 3 1/2 years ago, Dr. Becker and Reverend Tuggle were about as far away as Los Angeles and New York. We've got it down to Baltimore and D.C. now."

Administering grants

Heart, Body and Soul helps to administer three NIH grants. One $2 million, five-year study tries community-based education programs to persuade residents to stop smoking. A $2 million, five-year study seeks to educate blacks about a healthier diet, and a $2.4 million, five-year study examines differences between blacks and whites in heart disease.

Dr. Becker said Hopkins and the community board members make joint decisions on designing and implementing studies, including hiring practices.

The studies are designed partly to see whether such community outreach works better than traditional education programs, based on the assumption that people who try to educate the participants know the best ways of appealing to them. For instance, many of the health messages are preached directly from the pulpit and are based on the biblical idea that the body is a temple.

Too many times in the past, Mr. Tuggle said, researchers came in, conducted their studies, and left nothing behind. But he said the Heart, Body and Soul project offers something in return -- jobs for the community and free health care for participants.

Dr. Becker said the community wasn't the only partner with initial suspicions. Hopkins also had to learn to trust neighborhood workers to perform their tasks and administer some of the research grants.

"It's a big problem within the institution, trusting the community to be an equal partner," Dr. Becker said.

Linda Fried, a Hopkins researcher who studies older women with disabilities, also spoke at the conference. She said older women are happy to participate in research studies, as long as it's convenient. Since many have a hard time getting around, researchers have to go to them.

"I've been very impressed that the major reason older people are interested in participating in studies is they actually care about the importance of the studies. They see it as a contribution they can make to future generations," Dr. Fried said.

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