Collaborating with Breast Cancer Activists and California Communities
Women with breast cancer and survivors of the disease have played a leading role in the California Breast Cancer Research Program from the beginning. 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. Moreover, we still set a standard for having advocates at all levels of leadership.
A Wide Role for Advocates
Breast cancer advocates help shape our funding priorities, decide which research to fund, and take part in conducting some research projects.
We developed our current funding strategy from recommendations made at our statewide Public Advisory Meeting in 1996. 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 a half-decade of BCRP grant-making.
Breast cancer advocates are one-third of our Advisory Council, the body that recommends the research proposals that best fit our funding strategy. Throughout our six-year history, an advocate has also served as the Council's Chair or Vice-Chair. All research proposals are reviewed for scientific merit by out-of-state research scientists; out-of-state breast cancer advocates are full voting members of these review panels. And a California advocate observes each panel.
Advocates also mount exhibits about their work at our bi-annual Symposia.
Having breast cancer advocates in a wide variety of leadership posts allows us to fund research important to the people who face the disease in their day-to-day lives.
Breast cancer advocates are also investigators on some of BCRP'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 community members 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:
- A community-based workbook for helping rural cancer patients;
- Breast cancer risk factors of lesbians and heterosexual women;
- Breast cancer screening in Hmong-American communities;
- Culturally-appropriate care for Samoan-American and Korean- American women;
- Breast health access for women with disabilities;
- The effectiveness of "peer navigators"-breast cancer survivors who volunteer to help newly-diagnosed women make decisions about treatment and coping with the disease.
During 2000, we conducted a formal evaluation of our Community Research Collaboration Awards. Based on recommendations from the evaluation, we've improved these awards by providing community members with more training, support and information. We added smaller grants to develop promising ideas by providing funds to build a better research team or design a better research proposal. We also corrected some problems with the timing of the awards and payments.
Overall the evaluation of our Community Research Collaboration Awards was positive. The program reached communities not often reached in research, such as minority women, disabled women, rural women and lesbians. BCRP also provided constructive feedback on proposals we did not select for funding, and we supported applicants through re-writing and re-applying. This is extremely helpful for bringing new types of researchers into the research process. These grants also facilitated relationships between community groups and some of the most community-sensitive researchers in California. More importantly, our Community Research Collaboration Awards have given communities of women affected by breast cancer the power to formulate and conduct research on questions that concern them.
