Making epidemiologic studies responsive to the needs of participants and communities: The Carolina Breast Cancer Study experience

In this report, we present the results of surveys administered to participants and nonparticipants in the Carolina Breast Cancer Study (CBCS). Surveys and structured interviews were administered to determine women's concerns regarding participation in research studies, access to health care, and beliefs regarding causes of breast cancer. Survey results showed the highest concern for the growing number of women diagnosed with breast cancer in North Carolina and potential environmental agents that may cause breast cancer. Negative responses were noted for time constraints related to participation and lack of familiarity with epidemiologic research; another concern noted was the lack of centralized information regarding breast cancer treatment. These issues were addressed by (1) developing a web site that provided background information about the CBCS, summaries of published study results, and information about the etiology of breast cancer; and (2) creating a state-wide, comprehensive breast cancer resource directory for women who need information about breast cancer diagnosis, treatment, and support. These two projects were carried out in collaboration with breast cancer advocates' and demonstrate the important role that advocates can play in making epidemiologic research more responsive to the needs of communities. (C) 2002 Wiley-Liss, Inc.