The perspective of African-American breast cancer survivor-advocates.

BACKGROUND: This article discusses the sometimes unique presentation and course of breast cancer in African-American women and the impact these differences have on the perception of breast disease among African-American women. METHODS: The project described represents the thoughts of many African-American breast cancer survivors, as summarized by three breast cancer survivor-advocates who work through very different national organizations, each of whom has vast experience working directly with African-American breast cancer survivors and their families. RESULTS: In addition to discussions of compelling considerations that have an impact on survivor access, such as agency, culture, and class, other important access questions are raised for research scientists and clinicians that have an impact on the prevention, screening, and detection and treatment of breast cancer in African-American women as well as their accrual to clinical trials. CONCLUSIONS: To eradicate ethnicity-related disparities in breast cancer outcomes for African-American women, it is important for the medical community (clinicians and research scientists) to develop active partnerships with African-American and other breast cancer survivor-advocates in order to establish effective breast health awareness and breast cancer treatment programs and to develop meaningful breast cancer research programs.

Overview of the summit meeting evaluating research in African-American women.

There is a disparity in the breast cancer survival rate among African-American women compared with the rate among white women. The summit meeting addressed the breast cancer crisis among African-American women by bringing together scientists, breast cancer advocates, and policy makers. The goal of the meeting was to develop a research agenda. For breast cancer research to advance, priority areas must be identified. The current article suggests questions and issues which are addressed in this cancer monograph.

Benefits and drawbacks of including consumer reviewers in the scientific merit review of breast cancer research.

BACKGROUND: This study assessed participant opinions about inclusion of breast cancer survivors as lay representatives in a scientific and technical merit review of proposals for the 1995 Department of Defense Breast Cancer Research Program (DOD BCRP). METHODS: The evaluation employed a prepanel and postpanel survey design, which was intended to elicit feedback about attitudes, perceptions, and beliefs toward collaborative consumer and scientist participation in scientific merit review. Qualitative methods were used to describe the consumers' and scientists' responses, to explore the significance of this interaction, and to gain an understanding of the benefits and disadvantages of bringing these participants together. RESULTS: Both groups were initially troubled about the consumers' lack of scientific background and questioned their qualifications and preparation for participation in a scientific panel. In particular, consumers were concerned that their judgments would not be taken seriously by scientists, a concern somewhat lessened by participation. After the meeting, scientists viewed the consumers as hard-working, dedicated survivors and advocates and endorsed the presence of carefully chosen lay panel members. Scientists were troubled that consumers potentially would have an impact on voting and on the subsequent scoring of proposals, a concern that was not validated by quantitative findings. CONCLUSIONS: As a result of these data, the DOD BCRP continues to embrace clarify the nature of collaborative participation in scientific merit review.