1. Engaging and Maintaining Community Involvement
Many communities distrust the motives and techniques of research. Some know of the history of exploitation and abuse in medical research in the U.S., and others may be “burned out” from participation in studies. Some may have immediate needs that make research seem irrelevant, and some may merely lack an understanding of the research enterprise.
Thus, when research is involved, the challenges of community engagement may be particularly profound. The vignettes that follow address some of the most common dilemmas in engaging a community in research and maintaining the relationship over time. The take-home messages offered at the end of each vignette are grounded in the principles of community engagement, as they demonstrate the importance of understanding communities; establishing trusting, respectful, equitable, and committed relationships; and working with the community to identify the best ways to translate knowledge into improved health.
A. How do you engage a community in a randomized clinical trial or a drug trial?
Sally Davis, PhD
Community-based research does not always allow for full participation of the community from start to finish, as is envisioned in the classic CBPR model. In CBPR, the community often comes up with the research question or issue of interest based on personal experience, but in a randomized controlled trial (RCT), the funding agency or investigator generally develops the question based on pressing health issues identified from surveillance or other data sources. A community-based RCT is often an efficacy trial and may include many schools or communities across a large geographic area.
For example, the PRC at the University of New Mexico conducted an RCT on obesity prevention with 16 rural Head Start centers across the state. An RCT conducted in the traditional way is done in an artificial “laboratory” setting within an academic health center or practice setting; an RCT in the community setting can be just as rigorous but with more flexibility and community participation. The challenge has been to develop strategies to engage the community in the research process within a short period of time and with clear communication and agreement.
Although the study was conducted in 16 communities and there was little time to establish relationships, researchers were able to engage the communities by inviting key partners to participate. For example, local grocery stores, health care providers, families, Head Start teachers, teaching assistants, and food-service providers were all included. This inclusive approach ensured participation from a broad array of community members from the beginning of the study. A memorandum of agreement (MOA) was developed that included input from community leaders and provided an opportunity for the researchers and the community to discuss and agree on roles, responsibilities, and expectations. Key members of the community (e.g., governing officials, school administration, and parent groups) and the university researchers signed the agreement. The MOA includes a clear statement of the purpose of the research, burden to the school or individual (the amount of time required to participate), benefits to the school (money, equipment, in-kind service), benefits to the academic institution and researchers (the opportunity to answer important questions and test interventions), needs (space, parental consent, special events, identification of other key individuals), and communication issues (regarding scheduling, staff turnover, complaints). The MOA is being used as a guidance document for the study. Having this agreement in writing is especially helpful when there is turnover of key participants, such as school staff or governing officials, or when there are new participants who may not be aware of the history or purpose of the study or of the roles, relationships, and responsibilities agreed upon at the beginning of the research.
- Engaging the community in RCTs is challenging but possible.
- Engaging and seeking input from multiple key stakeholders (e.g., grocery store owners, health care providers, and families) is an important strategy.
- Collaboratively developing an MOA can enhance communication and build new partnerships in studies that are restricted by time and are predefined.
- An MOA can serve as a valuable guidance document and useful tool throughout a study as an agreed-upon point of reference for researchers and community members (Davis et al., 1999; Davis et al., 2003).
Davis SM, Clay T, Smyth M, Gittelsohn J, Arviso V, Flint-Wagner H, et al. Pathways curriculum and family interventions to promote healthful eating and physical activity in American Indian schoolchildren. Preventive Medicine 2003;37(6 Part 2):S24-34.
Davis SM, Going SB, Helitzer DL, Teufel NI, Snyder P, Gittelsohn J, et al. Pathways: a culturally appropriate obesity-prevention program for American Indian schoolchildren. American Journal of Clinical Nutrition 1999;69(4 Suppl):796S-802S.
B. How do you overcome historical exploitation?
Sally Davis, PhD, Janet Page-Reeves, PhD, Theresa Cruz, PhD
A history of exploitation in rural communities may be manifested in a number of ways. In many such communities, structural inequality is evident in residents’ geographic isolation, great distance from commercial centers, lack of access to services, lack of availability of healthful foods, and poverty, as well as frequent turnover of staff in local institutions such as schools and health care facilities. This reality presents everyday challenges to the researchers at institutions that work in these communities. For example, distance, weather, and lack of infrastructure pose logistical challenges, and a lack of road maintenance, limited communication capacity, and uncertain access to food and lodging (necessities that urban residents may take for granted) are often problems in rural areas. These issues, combined with the problem of scheduling around competing priorities in the lives of both researchers and community members, are challenges for those living in or working with rural communities.
These challenges do not compare, however, with those created by the historical exploitation of residents in some of these communities. In the Southwest, where research has too often been conducted in an exploitative manner without the consent and participation of the community, it is extremely difficult to develop partnerships between rural communities and researchers. Many American Indian and Hispanic communities throughout the Southwest have been the subjects of research conducted by persons living outside the community who did not engage residents and their communities in the research. In one multi-site study with tribal groups across the United States that began in the 1990s, researchers at the University of New Mexico PRC and at four other universities were confronted with the challenge of overcoming the mistrust of seven tribal communities that had either experienced exploitation or heard of examples.
Despite the history of violated trust, the PRC was able to develop appropriate and meaningful partnerships between researchers and tribal communities. Together, the partners established and maintained the bidirectional trust necessary to develop and implement a successful intervention. They used a variety of participation strategies to achieve trust. For example, local customs and cultural constructs were considered in formulating the intervention, local advisory councils were formed, elders were included as advisors, local community members were hired, formative assessment was conducted to determine the feasibility and acceptability of the proposed prevention strategies in local terms, approval was sought from tribal and local review boards, and local priorities were determined. Participation, feedback, and collaborative relationships were crucial to engaging these underrepresented communities with a history of exploitation. And yet, perhaps the most important and most basic strategy was to demonstrate respect and inclusion to the fullest extent possible.
- Recognize that there may be a history of exploitation in the community and therefore a distrust of research and researchers.
- Employ a variety of participation strategies.
- Allow extra time for building relationships and trust.
- Seek approval from tribal or other local review groups.
- Include local customs in interventions.
- Demonstrate respect and inclusion to the fullest extent possible (Davis et al., 1999; Gittelsohn et al., 2003).
Davis SM, Reid R. Practicing participatory research in American Indian communities. American Society for Clinical Nutrition 1999;69(4 Suppl):755S-759S.
Gittelsohn J, Davis SM, Steckler A, Ethelbah B, Clay T, Metcalfe L, et al. Pathways: lessons learned and future directions for school-based interventions among American Indians. Preventive Medicine 2003;37(6):S107-S112.
C. How do you maintain community engagement throughout the research?
Deborah Bowen, PhD
The comedian Woody Allen once said, “Eighty percent of life is showing up.” That is true in community engagement as well as in life. Add to that formula the idea of showing up for the right events — those that are important to community priorities — and engagement takes place. For example, the author’s research group was funded to conduct a feasibility study of using rural farm granges as health promotion sites in ranching country. Granges are rural community organizations that support learning, information exchange, social events, and political action for farming and ranching communities. The feasibility study progressed from initial discussions to collection of formative data. These data collection efforts were by telephone, and, at first, response rates from the actual membership were relatively poor. The research group halted its efforts to collect data and conducted some qualitative research to better understand the issues.
The researchers found that lack of familiarity with the author’s research institute and the people involved might be one barrier to full participation of the rural residents and grange members. Over the next six months, the research institute staff began to attend community and farming events, getting to know residents and families and learning what the community’s important issues were. Research institute staff asked about these issues and attended events or supported efforts in the farming communities that were not necessarily related to health promotion but were key to the farm families in the granges. Several farm family members became part of the project’s community advisory board, giving both advice and direction to the new plans for surveys. After six months, the research group, together with the community advisory board, reinstated the telephone data collection efforts, which then achieved a much higher response rate. This kind of community engagement continued for the three-year project. These same connections with farm families in granges are still fueling health promotion efforts in this area.
- Engagement needs to occur as the ideas for research are being formed and the procedures are being identified.
- Taking the community’s priorities into account increases the opportunity for engagement.
- Being a regular presence in the community may enhance research efforts.
D. How do you engage a community organization as a partner in exploratory health research?
Lori Carter-Edwards, PhD, Ashley Johnson, Lesley Williams, Janelle Armstrong-Brown, MPH
The John Avery Boys and Girls Club (JABGC), located in the heart of a low-to-lower-middle-income community in Durham, North Carolina, primarily serves African American children and their families by providing a variety of after-school programs and activities. The organization is partnering with the Duke Center for Community Research (DCCR) to conduct a qualitative exploratory research study to understand children’s influences on the food purchasing behaviors of caregivers in the context of food marketing. African American children have a much higher prevalence of obesity than children of other ethnic groups (Skelton et al., 2009) and are more likely than other children to receive targeted marketing messages for products associated with intake of excess calories (Grier et al., 2010; Kumanyika et al., 2006). The intent of this study is to gain information on the local food environment to help inform and ultimately to modify policy. JABGC had a previous relationship with DCCR personnel in the area of program and policy development, but this was its first experience serving as a full partner with the DCCR in research.
The DCCR and the JABGC have met regularly since the development and funding of the study, which is sponsored by the African-American Collaborative Obesity Research Network, a national research network based at the University of Pennsylvania through a grant from the Robert Wood Johnson Foundation. The executive director of the JABGC identified an administrative lead from the club to serve as its point person. The DCCR faculty lead for the study and other researchers frequently visit the JABGC and have established a rapport with its entire administrative and programmatic staff. The core partners hold weekly telephone meetings to address issues related to execution of the study. During some calls, partners have discussed the data that needed to be collected and why, and these discussions helped to dramatically improve documentation. Regular telephone meetings also helped to clarify job priorities. It was important that the DCCR partners understood the work priorities of the JABGC staff and the limitations of what could and could not be accomplished during the study.
Some of the JABGC administrative staff has changed since the research began, but because of the rapport built through the partnership and the existing mechanisms for communication, the changes have not adversely affected the team’s ability to conduct the research. Continued communications between the DCCR and the JABGC administrative and programmatic staff have been key to sustaining organizational relationships.
- Establishing a collaborative research relationship may involve a different level of engagement than a collaborative outreach relationship.
- Organizations have their own responsibilities that have to be met independently of any research.
- Communicating regularly and often to keep all partners aware of priorities within the respective institutions is important.
- Working collectively to proactively create relationships and put procedures in place can help sustain the research when the community organization staff changes.
- It should be understood that, despite the time limits for research, partnerships must be flexible.
Grier SA, Kumanyika S. Targeted marketing and public health. Annual Review of Public Health 2010;31:349-369.
Kumanyika S, Grier S. Targeting interventions for ethnic minority and low-income populations. The Future of Children 2006;16(1):187-207.
Skelton JA, Cook SR, Auinger P, Klein JD, Barlow SE. Prevalence and trends of severe obesity among US children and adolescents. Academic Pediatrics 2009;9(5):322-329.