Building community participatory research coalitions from the ground up: the Philadelphia area research community coalition.

BACKGROUND: A coalition of formal, large organizations and informal, grassroots organizations, recruited through an open process, contrasts with the usual practice of developing a community-based participatory research (CBPR) coalition with a small number of well-developed organizations. OBJECTIVES: This paper describes the process, developmental challenges, and accomplishments of the Philadelphia Area Research Community Coalition (PARCC). METHODS: The University of Pennsylvania-Cheyney University of Pennsylvania EXPORT Center established the PARCC, an academic-community research partnership of twenty-two diverse organizations of variable size and with variable experience in health research. The EXPORT Center provided the infrastructure and staff support needed to engage in sustained, face-to-face community outreach and to nurture, coordinate, and facilitate the 2.5-year developmental process. The start-up process, governing principles, activities, challenges, and lessons learned are described. LESSONS LEARNED: Since its inception, PARCC established core work groups, a governance structure, operating principles, research training activities, community health education projects, and several PARCC-affiliated research projects. Organizations across the spectrum of developmental capacity were major contributors to PARCC. The success of PARCC was based on committed and trusted leadership, preexisting relationships, trust among members from the community and academia, research training, extensive time commitment of members to the coalition's work, and rapid development of work group activities. CONCLUSIONS: Building a CBPR coalition from the ground up involving organizations of diverse size and at various stages of development presents unique challenges that can be overcome with committed leadership, clear governance principles, and appropriate infrastructure. Engagement in community-based research during the early stages, while still developing trust, structure, and governance procedures can be accomplished as long as training of all partners is conducted and the trust building is not ignored.

Use of CAM in local African-American communities: community-partnered research.

Although previous national surveys have shown an increase in the use of complementary and alternative medicine (CAM) in the U.S. population, racial and ethnic minority populations were under-represented in these surveys. As a result, a profile of the CAM user as white, female, affluent, middle-aged and well educated has emerged. Representing the mainstream population, these previous studies did not take into account the racial and ethnic minority populations who may have their own healing traditions and who may hold different beliefs, use different terminology, and have unique patterns of CAM use. In partnership with community-based organizations and community residents, a culturally sensitive survey instrument and protocols were designed and tested to gather data on lower income, urban African-Americans' use of, attitudes toward, and understanding of CAM. The major findings of this pilot research are 1.) Community-partnered research can help researchers gain access to sensitive data and design culturally appropriate studies; 2.) CAM terminology varies by cultural group; 3.) Certain forms of CAM (folk or family practices) are commonly found in African-American populations; and 4.) Factors that affect CAM use--including age, lack of access to conventional medicine, cultural heritage, and dissatisfaction with conventional medicine.