"You've Got to Understand Community": Community Perceptions on "Breaking the Disconnect" Between Researchers and Communities

Abstract

"You've Got to Understand Community":Community Perceptions on "Breaking the Disconnect" Between Researchers and Communities Clara Goldberg-Freeman, Nancy Kass, Patricia Tracey, Barbara Bates-Hopkins, Glenn Ross, Leon Purnell, Bernard Canniffe, and Mark Farfel Purpose The Environmental Justice Partnership (EJP) was formed in 2003 to bring together researchers from Johns Hopkins and members of the surrounding urban community for increased, equitable partnerships and sustained dialogue, particularly in relation to research conducted in the local community. The EJP includes a Community Board of East Baltimore leaders and community based organizations, Johns Hopkins faculty and staff, and graphic art designers from the Maryland Institute of Art. In an effort to know how best to apply the principles of community-based participatory research (CBPR) to future research partnerships between Johns Hopkins and the local East Baltimore community, The EJP stressed the importance of learning community stakeholders experiences and views on research. Through this project, and in close partnership between the community and Johns Hopkins researchers, the EJP conducted focus groups with East Baltimore residents and interviews with other community leaders and representatives of community-based organizations. The goal of these focus groups and interviews was to learn experiences, attitudes, and recommendations about research in their community. Recommendations for Policy and Practice Implementing CBPR guidelines equitably can be difficult and creates many challenges. The first challenge is to be correct in how to approach the community where the research is targeted. These ho:challenges surface between researchers and communities when it comes to identifying the community leader or who speaks for the community. CBPR remains a work in progress because researchers have acknowledged that to do good research, finding and using the best approach to gain entry to a community is important. Communities have to see the need for the research, and the researcher needs to be able to deliver the research findings back to the participating community. To do this a working relationship must be established so that partners can learn about and understand each other's needs. In addition, collaborative partnerships facilitate learning about the unique history of the community, its cultural values, and its priorities. In short, our research specifically found the following steps to help the process. 1. Researchers should do what they can to learn about the community, listen to community views and priorities, and try to understand the community. 2. Researchers should spend time in the community. 3. Researchers should increase how much they communicate with communities and should emphasize transparency. 4. Researchers should think about sustainability from the start and build capacity development into research projects. 5. Researchers should always disseminate their findings, through a variety of mechanisms. Additionally, that community residents and representatives want to be more involved and want to ensure they are not exploited is consistent, not only with the principles of CBPR, but also with the growing ethics literature on respectful engagement of communities, especially underserved and/or disadvantaged communities. Indeed a small, but growing literature states that [End Page 213] researchers have responsibilities not only to minimize harm, engage in meaningful informed consent, and avoid exploitation of individual subjects, but that these ethics obligations apply to targeted research communities as well. Knowing how to develop and define meaningful engagement or sufficient benefit to a research community is complex; an important first step, however, is recognizing such goals to be not merely aspirational, but morally mandated as well. It may be that community expectations for more are well founded, and it also may be true that the institution may do well to better publicize the contributions that it already makes, for example, through dissemination of research results. Not only does increased dissemination improve visibility of researchers' contributions, but it increases access to important information to prevent or treat health problems. In addition to dissemination, researchers should increase their interaction with community participants and residents as a whole during all stages of research. Interaction between researchers and community members often is constructive and positively viewed. The most negative impressions seem to come when rumors can continue and actual exchange is limited at best. This kind of interaction will also better guide researchers to make sure research is most appropriate, and meets needs of...