Collaborating with Breast Cancer Activists and California Communities
“Involving 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.”
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. Nonscientist 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 including advocates at all levels of leadership.
Breast Cancer Advocates in Leadership
We developed our current funding strategy from recommendations made at our statewide Public Advisory Meeting in 1996, which are reviewed and modified annually by the Council. That meeting brought together research scientists from universities and the biotech industry, health care providers and health educators, and breast cancer activists and survivors. Together, they set the course for CBCRP grant making.
Breast cancer advocates constitute one-third of our highest leadership body, the Advisory Council. The Council recommends the research proposals that best fit our funding strategy. Throughout our eight-year history, an advocate has served as the Council's Chair or Vice-Chair. In addition, outof- state panels of research scientists review all our research proposals for scientific merit. Out-of-state breast cancer advocates are full voting members of these review panels and a California advocate observes each one.
Advocates also exhibit their work at our bi-annual Symposia.
Involving 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 non-profit 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 breast 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
Community-Based Research Increased in 2001
During 2000, we conducted a formal evaluation of our Community Research Collaboration Awards. As a result of the evaluation, we decided to do more outreach to let potential researchers know about this opportunity, and we also made several changes to make the grants more user-friendly. We now provide community members with more training, support, and information. We've added smaller grants to help community researchers develop promising ideas by building a better research team or designing better research. We've also corrected some problems with timing and payments.
These improvements inspired members of more California communities to team up with scientists and send us good research proposals this year. As a result, during 2001, we funded a lot more community research, with 14% of our funds going for Community Research Collaborations, compared to 1% the year before. This means more California communities of women affected by breast cancer now have the power to conduct research on questions that concern them.
