Collaborating with Breast Cancer Activists and California Communities
Women with breast cancer and survivors of the disease are involved in every level of the California Breast Cancer Research Program, from deciding which research we fund to actually carrying out some of our research. Lay advocates have played a leadership role in our program right from the start. We've been in the forefront of a nationwide trend among research funding agencies toward a greater voice for the people breast cancer affects most, and we still set the standard for having advocates at all levels of involvement and participation.
Breast Cancer Advocates in Leadership
Breast cancer advocates are one-third of our highest leadership body, the advisory Council. The Council recommends the research proposals that best fit our funding strategy. Throughout our nine-year history, an advocate has also always served as the Council's Chair or Vice-Chair. In addition, out-of-state breast cancer advocates are full voting members of our scientific review panels and a California advocate observes each panel.
Having breast cancer advocates in a wide variety of leadership positions ensures that we fund research important to people who face the disease in their day-to-day lives.
Advocates Doing Research
Breast cancer advocates are also investigators on a rising number of the CBCRP's research projects. In 1997, we pioneered a new type of research grant that allows breast cancer advocacy organizations to team up with experienced scientists for a research project. These Community Research Collaboration Awards are open to nonprofit organizations or ad-hoc community groups in any California community affected by breast cancer. The majority of community collaborators we've funded to date have been breast cancer survivors.
Projects we've funded over the years include:
- Investigation of problems women face returning to work after breast cancer surgery
- Pioneering research into breast health and breast cancer programs for deaf and hard-of-hearing women
- A community-based workbook for helping rural cancer patients
- Breast cancer risk factors of lesbians and heterosexual women
- Culturally-appropriate care for Samoan American and Korean American women
- The effectiveness of “peer navigators” —trained volunteer breast cancer survivors who help newly-diagnosed women make decisions about treatment and cope with the disease.
We're in the midst of a multi-year process to increase the participation of women affected by breast cancer in research into the disease. During 2000, we conducted a formal evaluation of the Community Research Collaboration Awards. As a result of the evaluation, we increased our outreach efforts to let potential researchers know about this opportunity. We also improved the grants in several ways. These improvements inspired members of more California communities to team up with scientists and send the CBCRP well-designed and scientifically-sound research proposals. As a result, we increased the amount of community research we funded, with 15% of our research funds going for Community Research Collaborations during 2001, compared to 1% the year before.
During 2002, we added another improvement designed to increase the pool of researchers and community groups capable of doing research that empowers California communities of women to investigate breast cancer. CBCRP-funded Community Research Partnerships can receive a supplement to their grant to mentor a student, a new researcher, or a community group interested in doing this type of collaborative research. Next year, we will conduct training at sites throughout California to encourage and educate community groups to get involved in breast cancer research.
