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. Non-scientist 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 providing 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—women who have or have had the disease, or who represent organizations that serve women with the disease—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 tenyear history, an advocate has always served as the Council’s Chair or Vice- Chair. In addition, out-of-state panels of research scientists and advocates review all CBCRP 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.

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 (CRC) 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 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

The CBCRP’s Community Research Collaboration Awards have had a major impact on the community organizations that have received funding.

• Marin Breast Cancer Watch, funded in 1998 to study possible causes for the high rate of breast cancer in Marin County, was featured as a model at the 2002 International Summit on Breast Cancer and the Environment. The organization also received funds from the National Institute of Environmental Health Sciences (NIEHS) to do more work on breast cancer in the county in partnership with the University of California, San Francisco.
• Breast Health Access for Women received CBCRP funding in 1998 to determine the prevalence of barriers to breast cancer screening among women with physical disabilities, to develop successful outreach strategies, and to disseminate the program to other areas in the country. The organization has since educated many organizations about the breast screening needs of women with disabilities.
• The Wellness Community received CBCRP funding to test whether online support groups for women with breast cancer could significantly increase the women’s quality of life. They found that these groups are helpful for women who are too ill to attend a support group or live too far from a place where they can access face-to-face support. The Wellness Community currently provides nine online support groups, and their Web site averages 1,000 to 4,000 new visitors per month.

Fostering Community-Based Research
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 CRC 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 more members of 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 percent of our research funds going for Community Research Collaborations during 2001, compared to 1 percent 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.

During 2003, we conducted training at sites throughout California to encourage and educate community groups to get involved in breast cancer research. During 2004, with a grant from the California Endowment, we will continue providing this training across the state. We’ll also formally evaluate the Community Research Collaboration awards for a second time, to measure the outcomes of this funding.