Introduction
In 1993, the California legislature responded to breast cancer advocates' pressure for more research funding to fight the disease by asking the University of California to establish and administer the California Breast Cancer Research Program (CBCRP). The CBCRP's mission is to reduce the impact of breast cancer in California by supporting research on the disease and facilitating the dissemination of research findings and their translation into public health practice. The CBCRP initiated the Community Research Collaboration (CRC) Awards in 1997 to bring community members and experienced research scientists together to study breast cancer-related issues that are of interest to both. The CRC Awards require a partnership between community members (such as breast cancer advocacy organizations) and research scientists.
The CRC Awards are modeled on Participatory Research (PR) as promoted by Dr. Larry Green. He defines Participatory Research as “systemic inquiry, with the collaboration of those affected by the issue being studied, for purposes of education and taking action or affecting social change” (George & Green, 1998-99.) The partnership works together to identify the research question, develop the research plan, carry out the research, interpret the results, and disseminate information to the community.
PR, and the similar Participatory Action Research, is unique in the role the community of interest plays in the research project itself. Community members are equal partners in the research project. They have power in the development, implementation, and analysis of the research, and are able and willing to use the research to take action or create social change. PR is carried out with and by local people, not on them (Cornwall and Jewkes, 1995). It places the community, rather than the researcher or even the research question., at the center of the research paradigm, Since 1997, the CBCRP has awarded a total of $4.6 million to 12 Community Research Collaborations, funding a wide variety of projects, including:
- a community-based workbook for helping rural cancer patients;
- a method for increasing annual recall in state early detection programs
- breast cancer risk factors of lesbian and heterosexual women;
- breast cancer screening in Hmong American communities;
- adolescent risk factors for breast cancer in Marin County;
- culturally appropriate breast care for Samoans and Koreans;
- breast health access for women with disabilities;
- community cancer support groups, retreats, and peer navigators;
- issues women with breast cancer face when they return to work.
In May 2000, the CBCRP began a process of evaluation of the CRC Award's program/funding mechanism. The consulting firm Marj Plumb and Associates interviewed awardees and applicants who had not received funding to assess the strengths and weaknesses of the CRC Awards. We gathered information on:
- the roles of the research partners;
- the nature of the research partners' involvement in the studies;
- suggestions for improving the CRC funding mechanism;
- lessons awardees and rejected applicants had learned that could foster strong collaborations between community members and academic researchers in the future.
