- Berman Institute Bioethics Bulletin - http://bioethicsbulletin.org -

Focus On: Community Engagement in Research

Local volunteers want to help carry out studies, and know the outcome

New survey reveals widespread enthusiasm among Hopkins faculty for more community collaboration

 
Vivian Tyler has been an employee on the Johns Hopkins medical campus for more than 20 years, interviewing residents from the surrounding community who may want to participate in clinical trials and community-based public health research. Tyler is also a native of East Baltimore, and she sympathizes with her neighbors when they say that they feel as if researchers sometimes regard them as little more than guinea pigs.

 

Community members sign up, they become research subjects, and then many never hear another word from those conducting the study. If there was one thing that researchers could do to foster trust and closer ties with the community, Tyler says it would be to share findings from the studies that residents volunteered for with the community.

 

“They really don’t share that information,” Tyler said.

 

There are two different types of health research that local residents might join. One is research based within the institution, where a clinical trial is conducted to test a new way of treating or diagnosing a disease, for example.  In these studies, doctors and other researchers enroll people of all different backgrounds. Sometimes, these people come from the local community.

 

The second type of health research that involves community members seeks to study what may be a significant public health issue in the vicinity—asthma or diabetes, for example. The goal is to learn what is causing a problem locally and what might make a difference in addressing it.

 

In both types of research, findings are published to advance a scientific field and, more broadly, public understanding. But in the latter, the community and its members play a more central role.

 

“The community wants to do more, not just be part of the study,” Tyler said. “But they would like to work in the study as a recruiter, or to work with the public.”

 

A new survey by a Johns Hopkins academic-community partnership has found that most faculty surveyed agree with Tyler: An overwhelming 91 percent of faculty at Hopkins who do research involving local residents said community involvement makes research more relevant, and 87 percent said it improves the quality of research.

 
“This is a huge, stunning finding,” said Nancy Kass [1], Sc.D., deputy director for public health at the Johns Hopkins Berman Institute of Bioethics, and a member of the survey team. “Faculty are giving a ringing endorsement of how important working with the community can be when conducting research.”

 

 


Bridging the gap

That finding has implications well beyond East Baltimore. Hopkins is but one of several well-funded research centers in the middle of poor urban neighborhoods. The glaring disparity between an ultramodern campus and high-tech hospital on one side of the street, and on the other, neighborhoods full of disadvantaged families—many with little access to quality health care—raises many challenges for those seeking to forge stronger bonds between researchers and nearby residents.

 

[2]In 2003, an academic-community collaboration called the Environmental Justice Partnership [3] (EJP) was launched, bringing together faculty and staff from the Johns Hopkins Medical Institutions with a community board that includes East Baltimore residents, leaders and members from local organizations. The partnership seeks to develop equitable and sustainable dialogue between Hopkins researchers and the various communities of East Baltimore—particularly in relation to locally based research and environmental health concerns.

 

“We’re trying to educate people,” said Tyler, a member of the EJP board. “But it would better if we could get more faculty and staff involved with the community.”

 

The survey, which included responses from 291 faculty at Hopkins who had ever conducted human subject research involving local residents, also found that researchers want more skills for how to involve the community. “We are trained to do research, to conduct surveys, to analyze data and to publish our findings,” Kass explained. “But we’re never taught how to work with communities—particularly communities that are different from our own.

 

“To me,” Kass continued, “one of the most encouraging findings from this study is how eager our faculty are to gain more of these skills.”

 

The survey team, comprising Johns Hopkins faculty and community-outreach staff—themselves natives of East Baltimore—also called on academic institutions to do more to encourage community engagement, including through increased recognition and funding for such work. Funders could also require and provide support for community members being involved in research-related tasks before awarding grants, the team suggested.

 
The survey results were published in the December issue of the Journal of Empirical Research on Human Research Ethics [4]. It is believed to be the first study to systematically assess how faculty involve community members in their research.

 

Among faculty who recruited local residents for research conducted within the walls of their various institutions—needing volunteers for a clinical trial to test new medical equipment at Johns Hopkins Hospital, for example—just over 30 percent said they hired members of the community for research-related work. About 30 percent of faculty who did institution-based research reported collaborating with neighborhood groups or leaders.

 

Those numbers were much higher among faculty who did community-based research: About two-thirds of them hired local residents as support staff, and more than 80 percent of those faculty said they collaborated with neighborhood organizations or leaders.

 

Their survey was initially sent out to 2,930 faculty, and 715 completed the questionnaire. The team included 291 of the responses in the final analysis because some faculty who responded either weren’t full time, did not actually conduct human-subject research or did not involve members of the community in their studies.

 

Where more work is needed

Other findings from the survey echoed the dissatisfaction that Tyler voices on behalf of her East Baltimore neighbors. In the journal article, the survey team reported that when community members were involved in research, that involvement often was in only the most procedural of tasks, such as recruiting subjects or collecting data.

 

The authors also acknowledged that some researchers may simply not be very good yet at interacting with community members. But becoming more familiar with neighbors, their organizations and their activities would help to bridge gaps and lead to better communication, the authors concluded.

 

They also 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 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.”

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