“This is a huge, stunning finding,” says Nancy Kass, Sc.D., deputy director for public health at the Johns Hopkins Berman Institute of Bioethics. “Faculty are giving a ringing endorsement of how important working with the community can be when conducting research.”
Beyond these sentiments, the survey also found that Hopkins health researchers who conducted studies in the surrounding community were more likely to hire and collaborate with local residents.
The survey, published in the December issue of the Journal of Empirical Research on Human Research Ethics, is believed to be the first to systematically assess how faculty members in an urban institution perceive the involvement of residents from the adjacent, disadvantaged communities in their activities.
Among faculty who responded to the survey, those whose research was based in the community were far more likely to hire local residents to carry out their work than other researchers; more than 80 percent of these faculty said they collaborated with neighborhood organizations or leaders.
Further, faculty who conducted community-based research were more likely to involve local residents in designing study procedures, developing interventions and disseminating the results—when compared to other researchers who involved community residents in their studies.
The survey results were based on a questionnaire sent to 2,930 faculty members from Johns Hopkins. Of the 715 who completed the survey, researchers at the Berman Institute of Bioethics and their community-based partners analyzed the responses of 291 who reported having conducted human research that included residents of the largely minority community around the Hopkins medical campus.
The survey distinguished between research carried out in the community and studies that recruited area residents for studies within the institution itself.
Kass and her colleagues said the results, while drawn from Johns Hopkins’ own research experience, should be encouraging for peer institutions that want to improve community-engagement efforts and build better relationships between well-funded research centers and the urban, often disadvantaged, neighborhoods that surround them.
The survey was part of the work of the Environmental Justice Partnership, a collaborative created in 2003 with funds from the National Institute for Environmental Health Sciences. The partnership includes faculty and staff from the Johns Hopkins Medical Institutions, community-outreach staff from East Baltimore and a community board made up of East Baltimore residents, leaders and members from neighborhood organizations.
“Communities are not against research. They just want to be an equal partner, with the same benefits as the researchers,” says East Baltimore native Patricia Tracey, a community-relations coordinator at the Johns Hopkins Bloomberg School of Public Health. “They want the researchers to teach them how to conduct their own research, to construct surveys, to analyze their data, to disseminate and to publish their findings.
The survey also found that faculty researchers want more skills on how to involve the community. “We are trained to do research, to construct surveys, to analyze data and to publish our findings,” explains Kass, the Phoebe R. Berman Professor of Bioethics and Public Health at the Berman Institute. “But we’re seldom taught how to work with communities—particularly communities that are different from our own.”
Kass and her team said the results suggest that institutions need to identify more strategies for providing such training, and that funders should consider requiring that community members be involved in research-related tasks before awarding grants—at least for projects based in and targeted to specific communities.
In the journal article, the survey team wrote that they were surprised by how few faculty shared research findings with local residents who volunteered.
“That finding is a powerful reminder of the ethical duty that we as faculty have to communicate with community members,” Kass said. “We depend on local residents for research that we conduct to address important health issues. We then need to do our part and let the community know what we learned.”
The survey was led by Clara Goldberg-Freeman, M.H.S., who spent five years as project manager of the Environmental Justice Partnership. In addition to Kass and Tracey, the team included Andrea Gielen, Sc.D., professor in the Department of Health, Behavior and Society at the School of Public Health; and East Baltimore native Barbara Bates-Hopkins, a community-relations coordinator for the Johns Hopkins Center in Urban Environmental Health.
Mark Farfel, Sc.D., an associate professor at the School of Public Health at the time of the survey, also co-authored the article and was the original principal investigator for the Environmental Justice Partnership. He now works in the New York City Department of Health and Mental Hygiene.