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Ideally, the relationship between a research institution and a community should be symbiotic. Imagine the following: a research institution posts signs throughout a community explaining a proposed study, inviting community members to help plan and conduct it. Community members attend planning meetings; those interested are trained as members of the research team. After completion of the study, the research team reports back to the community about its findings and their implications; if appropriate, it also suggests how to use those findings to improve health and health care. Community members become more involved in pursuing the best health care possible for themselves and their families and in educating providers, researchers, and community representatives on their needs. In short, when community members have a stake in a research project, the project is likely to continue to have a local impact long after the researchers leave.
Community members in medically underserved communities often doubt that participation in research—especially research directed by large institutions having limited visibility in or prior involvement with such communities—will benefit them. (We define community members as everyone living in a community or working in community-based businesses, facilities, and organizations.) In our experience, community members report that researchers generally collect data and then leave, offering little or no information on the results and their implications, and that, even when results are provided, there is often no guidance on whether and how to act on them to improve health. But we find that community members want such information and more; indeed, when approached by researchers, community members have asked such questions as,
In short, community members increasingly seek to be treated as active partners, rather than solely as subjects, in research endeavors—and researchers are beginning to recognize that there are drawbacks to not doing so. For example, as Marshall and Rotimi observed, “power and trust are key ingredients” in the relationship between researchers and community members. But power differences resulting from factors such as educational background, ethnicity, language, and economic status, if not addressed, can lead to mistrust and a perception of researchers as outsiders who collect data without considering the community’s needs.1
One way to address this is to build a community’s “research capacity”—the ability of its key members (including health care workers and community leaders) to contribute in a meaningful way to planning, organizing, and implementing a research project and to evaluating and disseminating its results.2, 3 This occurs through educating, training, and supporting community members, fostering their development of research-related skills. Such skills might include being able to participate in4
Two of us (EDS and BLD) and colleagues—who included nurse researchers at a local university and community members—designed a study to develop and test a culturally relevant intervention to increase mammography screening among black women who, as a population, tend not to adhere to mammography screening guidelines. (The study is unpublished.) The intervention was implemented by community members after they received training in research capacity–building. The nurse researchers first presented several workshops in research ethics and methodology to prepare the community members to serve on the research team. The workshops were based on principles of adult learning and emphasized experiential learning with group discussion, guided participation, the use of examples, and role-playing. Community members were then given opportunities to practice their newly acquired skills through guided teaching exercises and return demonstrations. The majority of the workshops were held in community settings, using everyday language rather than academic terminology or jargon. Topics addressed included the role of an institutional review board (IRB), informed consent, community needs assessment, recruitment strategies for potential subjects and participants, focus groups, development and implementation of planned interventions, and literature review.
For example, one workshop focused on enhancing community members’ understanding of ethical issues in research and the purpose and function of the university’s IRB. The concept of informed consent was explained and the importance of following the university IRB–approved research protocol (the steps to be taken in implementing the research) was discussed. Community members who completed the workshop then went on to take the university IRB–required training for certification as research team members. Another workshop provided training in community needs assessment. Community members were taught how to systematically gather information about the community’s assets and limitations and to develop questions that would elicit information about its needs.
Still another series of workshops engaged community members in developing both the intervention and a questionnaire for assessing its effectiveness. Community members reviewed the literature and helped gather content for inclusion in the intervention and the questionnaire, then helped revise both. They learned how to conduct focus groups that evaluated the intervention and the questionnaire and to discern thematic patterns in the data. Practice sessions were held to ensure competence: the nurse researchers modeled implementation by presenting the intervention to community members, who were encouraged to ask questions and to comment on anything they found potentially confusing; then community members practiced presenting the intervention to the nurse researchers and one another. During and after their presentations, they received feedback. The practice sessions also prompted further revision of the intervention, to increase the likelihood that it would be both culturally relevant and well understood. When the intervention was first implemented in the community, it was presented by community members under the supervision of nurse researchers; after its initial implementation, community members were responsible for its continued use in the community.
In a pilot study, McDevitt and colleagues (including one of us, JW) designed and tested a 12-week walking program tailored for people with serious, persistent mental illness.5 The intervention was developed jointly by the researchers and community members based on focus groups with potential participants6 and interviews with community informants (such as case workers and program directors working with this population). Participants in the walking program, all adult outpatients at a psychiatric rehabilitation center, responded favorably with improved mood and psychosocial functioning. At the program’s conclusion, they successfully lobbied the center’s administrators to make the walking program part of their ongoing health care regimen.7 In our view, the inclusion of both the community informants and potential participants during the program’s initial planning helped to foster that sense of “ownership.”
All nurses have a responsibility to ensure that the health care needs of underserved communities are met—and fostering partnerships between community members and researchers is one means to that end. Nurses can be effective liaisons, conveying specific health care concerns to researchers, informing community members about the research project, and encouraging communication between the two groups. Because nurses work in varied settings, they can often quickly identify which community members are likely to be interested in learning research-related skills and joining the research team. Finally, nurses on the research team can help ensure that research findings are effectively disseminated to those who need that information—for example, by scheduling town meetings and meetings with local congregations, presenting and answering questions about the findings, encouraging discussion about the implications of such findings for the community, and soliciting recommendations for future projects.
The research by Smith and colleagues reported in this article is supported by the National Institutes of Health (NIH), National Institute of Nursing Research (NINR), Grant no. R21 CA119962. Manuscript preparation was supported by the Center for Reducing Risks in Vulnerable Populations, Grant no. P30 NR009014, NINR, NIH.