Studies of breast cancer in geographic areas where incidence is incrementally higher than the rest of the US have been largely motivated and shaped by public involvement on the part of breast cancer advocates concerned with potential environmental causes. Such activism has taken place on Cape Cod, Massachusetts and Long Island, New York, resulting in new forms of research funded by state and federal governments. Public involvement has contributed to this research by providing information from women with breast cancer who have embodied knowledge of breast cancer and local environmental history. In both locales, collaboration between citizens and scientists was built into the original research plan and has had important ramifications. In this paper, we show how this research has taken place, evaluate the outcomes of public involvement, and, based on these examples, present a model for advocacy participation in future research. In order to outline a proposed prototype, we detail the way in which activists have been involved in research, the obstacles advocates and scientists have faced, and the consequent changes in their attitudes and practices. We also highlight the way that connecting the experience of women with breast cancer and other stakeholders enlightens the conduct of science by providing a perspective not traditionally heard, and creates results grounded in the interests of women and their communities. Breast cancer research conducted on Long Island and Cape Cod can serve as an example for structuring future research, such as the national research centers proposed by the National Breast Cancer Coalition. See www.SilentSpring.org
Learning Objectives: 1. Devlop effective community involvement in breast cancer research 2. Evaluate community involvement in epidemiologic research 3. Understand the role of activists in breast cancer research
Keywords: Community Involvement, Breast Cancer
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.