To better understand the key issues in establishing and maintaining CBPR partnerships based on the experiences of six of the Children’s Centers, in this section we provide a brief description of the community context and structure of community involvement in these centers. Each of the 12 Children’s Centers was invited to participate in the development of this article. Because of time constraints, 6 of the 12 centers were not able to participate. Therefore, the experiences and lessons learned discussed here represent the efforts of the six Children’s Centers described below. The methodology used in writing this article included identification of academic and community partners from each of the six centers to be co-authors; conduct of several conference calls involving co-authors from each of the Children’s Centers to determine major topic areas to be covered; preparation by each center of a written mini-case study covering the topics outlined by the co-authors (based on ongoing conversations and documentation within the respective partnerships and, in some instances, a more formal evaluation of the partnership); synthesis and integration written by the lead author of the strategies, lessons learned, and recommendations discussed in the case studies; and review of the manuscript and revisions made based on the input and perspectives of the co-authors across the six centers.
California Center for Children’s Environmental Health Research at the University of California, Berkeley (California/Salinas center).
Involving the predominantly Latino farmworker community in Salinas Valley, California, the California/Salinas center is a research partnership among the University of California at Berkeley, several state and federal agencies (the California Department of Health Services, the California Environmental Protection Agency, the Centers for Disease Control and Prevention), educational and research institutions (e.g., Stanford University, Battelle Laboratories), and numerous community agencies. The community partners, all within the state’s Salinas Valley in Monterey County, include Clínica de Salud del Valle de Salinas, Natividad Medical Center, South County Outreach Effort, California Rural Legal Assistance, the Grower-Shipper Association of Central California, and the Monterey County Health Department. The overall role of the partners is to advise center researchers in the development, implementation, analysis, and dissemination of culturally appropriate children’s environmental health research in the Salinas Valley.
The center has two advisory boards in the community, a community advisory board (CAB), which advises on all center studies, and an Intervention Farmworker Council (IFC), which was formed specifically to participate in the development and analysis of the intervention study. All partner organizations attend CAB meetings; however, the formal eight-member board itself is composed of representatives from three partner organizations and representatives of four additional organizations: the Monterey County Farm Bureau, the Monterey County Agricultural Commission, the Monterey County Board of Supervisors, and the California Assembly District 28. A representative from the seven-member IFC also sits on the CAB.
Maryland Center for Childhood Asthma in the Urban Environment, Johns Hopkins University (Maryland center).
Involving the primarily low-income African-American community in East Baltimore, Maryland, the Center for Childhood Asthma in the Urban Environment recruited community members to join a CAB. The CAB met monthly with the study team based at the Johns Hopkins University School of Medicine and Bloomberg School of Public Health. Separate meetings by the CAB were also held. Members of the CAB included two school principals, a pastor, a nun assigned to work in the community, two community association presidents, a parent of a child with asthma, health personnel who had worked in the community, and a clinical social worker. The role of the CAB was to provide community input to the research investigators regarding the construction of the control group, recruitment strategy, and data collection to ensure participants received benefit from their involvement in the study.
Michigan Center for the Environment and Children’s Health (Michigan center).
Involving a low-income, predominantly African-American community on the east side, and a low-income largely Latino community in Southwest Detroit, Michigan, the Michigan center is a CBPR partnership governed by a set of CBPR principles (Israel et al. 2001
; Parker et al. 2003
; Schulz et al. 1998
). Community partners have been involved in all aspects and projects of the Michigan center, but they have been most involved with the Community Action Against Asthma (CAAA) research projects. The work of CAAA is guided by a steering committee (SC) composed of representatives from all of the partner organizations: the Detroit Department of Health and Wellness Promotion, the University of Michigan Schools of Public Health and Medicine, the Henry Ford Health System, and seven CBOs: Community Health and Social Services Center, Friends of Parkside, Warren-Conner Development Coalition, Latino Family Services, United Housing Coalition, Detroiters Working for Environmental Justice, and Detroit Hispanic Development Corporation. The SC has been actively involved in all major phases of the research and intervention, including the initial definition of the research questions, the design of all survey instruments, the hiring of key staff, the decision making on how to enroll and retain families in the intervention and study, and the interpretation, dissemination, and translation of research findings.
New Jersey Center for Childhood Neurotoxicology and Exposure Assessment, University of Medicine and Dentistry, New Jersey (New Jersey center).
The community involved in the New Jersey center is the autism community of New Jersey, New York, Pennsylvania, and Connecticut. Drawing from a well-developed and extensive network of autism-based advocacy, support, and research-oriented groups, community groups have been involved with the center from the start. The community-based group Community Outreach and Support of the Autism Community, which is in its 39th year of operation with 4,000 members, is one of the center’s main partners. The partnership involves the Autism Schools, Edens Family of Services, and Douglass Developmental Center of Rutgers University. The partners work with the center on developing the hypothesis, the protocol design, recruitment, outreach, and communications with the autism community of the states involved. The partners participate in, coordinate, and moderate the town meetings the center has with the autism community of New Jersey and other states. Partners are also on the external advisory board of the center.
New York Mount Sinai Center for Children’s Environmental Health and Disease Prevention Research (New York/East Harlem center).
Involving the predominantly African-American and Latino communities in East Harlem, located in northern Manhattan, New York, the New York/East Harlem center formed partnerships among the center’s principal investigators (PIs) and the leadership of two federally qualified community health centers (Boriken Neighborhood Health Center and Settlement Health). Both health centers are governed by boards whose members represent health care consumers and community residents. Medical school investigators and the community partners agreed from the onset that joint decision making and collaboration was needed to design the intervention and research protocols, select and hire field staff, provide oversight to field staff in study recruitment and conduct of the intervention, organize and sustain a CAB, and disseminate information and lessons learned to the local community and to policy makers. An SC composed of the executive director and/or associate director of the health center, a health center physician, the PI, and the project research coordinator was set up at each health center; representatives from the community partner sites attended monthly center meetings at the Mount Sinai School of Medicine.
A CAB composed of 20 active community stakeholders was formed and met semiannually to advise the researchers on dissemination of information and to help design broader community interventions intended to change both individual and institutional behaviors related to pesticide use and pest control. Members included tenant association leaders and members, housing managers, school teachers, parent association leaders, social service agencies, community health providers, and local elected officials.
Washington Center for Child Environmental Health Risks at the University of Washington (Washington center).
Involving the predominantly Hispanic farmworker community in 16 small towns and eight labor camps in lower Yakima Valley of eastern Washington State, the Washington center’s community project is a partnership composed of a variety of CBOs and individuals. Examples of such groups include the local farmworkers’ union, local farmworkers’ clinics, local department of agriculture, State Department of Health, Department of Labor and Industries, U.S. EPA district 10, Washington Growers’ League, farmworker advocates, farmworkers, health care providers, legal representatives, local newspapers, a Spanish-speaking radio station, and university extension offices. The partnership has been formalized into an 18-member CAB that is facilitated by a project coordinator hired from the community and by the CAB. Rules of the partnership emphasize interaction, respect, and the principle that all ideas are freely expressed and discussed. The CAB has been involved in the community project from the beginning, in a number of areas, including providing information regarding the concerns among local residents about pesticide exposure; participating in the design of the data-collection content and procedures, intervention design, recruitment and implementation, publication, and dissemination; and hiring of local staff. A member of the CAB also serves on the center’s external advisory committee.