Collaborating with Breast Cancer Advocates and California Communities
People with breast cancer and survivors of the disease are involved in every level of the California Breast Cancer Research Program, from deciding which research the Program funds to actually carrying out some of the CBCRP’s research. Non-scientist advocates have played a leadership role in the CBCRP right from the start. The CBCRP has been in the forefront of a nationwide trend among research funding agencies toward a greater voice for the people breast cancer affects most, and the CBCRP still sets the standard for having advocates at all levels of leadership.
Breast Cancer Advocates in Leadership
Breast cancer advocates comprise one-third of the CBCRP’s highest leadership body, the advisory council. The council recommends the research proposals that best fit the CBCRP’s funding strategy. Throughout the CBCRP’s thirteen-year history, an advocate has also always served as the council’s Chair or Vice-Chair. In addition, out-of-state panels of 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. Advocates are also involved in the development and leadership of the CBCRP's Special Research Initiatives, a five-year effort to investigate the environmental causes of breast cancer and the reasons why some groups of women bear a greater burden of the disease.
Having breast cancer advocates in a wide variety of leadership positions ensures that the CBCRP funds research important to people who face the disease in their day-to-day lives.
Communities Performing Research
Breast cancer advocates are also investigators on a rising number of the CBCRP’s research projects. In 1997, the CBCRP pioneered a new type of research grant that allows community groups and 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 funded by the CBCRP to date have been breast cancer survivors.
Research involving community organizations as active partners is gaining credibility in the United States, and the CBCRP has been a prime mover in extending and supporting the use of this kind of research to breast cancer in California. The Community Research Collaboration awards have provided over $11 million in funding to 49 collaborative projects. Projects funded over the years include:
- Investigation of problems women face returning to work after breast cancer surgery
- An examination of factors in health care settings and health care provider interactions that promote and inhibit the experience of culturally sensitive care for low-income African American women
- The breast cancer profile of Vietnamese nail salon workers
- Breast cancer risk factors of lesbians and heterosexual women
- Culturally-appropriate care for Samoan American and Korean American women
- The effectiveness of a community education project designed to increase participation by African American women in clinical trials of new breast cancer preventive drugs
- The effectiveness of “peer navigators”—trained volunteer breast cancer survivors who work with newly-diagnosed women to understand decisions about treatment and to cope with the disease
- Testing of a culturally-sensitive DVD to increase knowledge of breast health and breast cancer risk among Native American women
- The breast cancer experience of Slavic women
- The barriers to older Thai women participating in breast cancer screening
The CBCRP’s Community Research Collaboration awards are designed to have an impact on breast cancer health care:
- La Lobe, a grassroots breast cancer support group in Nevada County, teamed up with researchers from the Stanford University School of Medicine to form the Sierra-Stanford Partnership. This partnership created a user-friendly workbook-journal for isolated and rural women recently diagnosed with breast cancer. The workbook provides facts, figures, and personal experiences of other women diagnosed with the disease. The partnership evaluated the effectiveness of the workbook, titled “One in Eight,” and found that women who were randomly selected to receive it showed a significant reduction in their traumatic stress symptoms related to having cancer, compared to women who did not receive the workbook. “One in Eight” has since been provided to other researchers and to community and state agencies for possible use in support programs. The workbook has drawn national and international interest.
- To understand and address the barriers faced by women with functional limitations in getting mammograms and other breast cancer screening services, Breast Health Access for Women with Disabilities (BHAWD) conducted a telephone survey of 320 women with physical disabilities in the San Francisco Bay Area’s East Bay region. The data is being used to develop policies and programs to ensure that breast screening education and services are accessible for all women, regardless of disability. BHAWD has completed a manual that provides a practical resource to disseminate the program’s successes, and to replicate it at disability and breast cancer screening programs.
Fostering Community-Based Research
The CBCRP has taken major steps over the past four years to enable diverse populations in California to take part in quality scientific research into breast cancer issues of interest to their communities. These efforts resulted in 2006 with the CBCRP receiving a record of 23 applications for CRC grants, the largest number in the ten years the Program has offered this type of grant. The scientific quality of these applications was also very high. The CBCRP funded ten of these applications, and also provided planning and development grants to four research teams whose applications had merit but needed strengthening. The funded research collaborations also extend across a wider geographic range of California than in any previous year. Women whose breast cancer issues have been explored very little, or not at all, will now have their issues systematically addressed.
The effort that led to this success began in 2003. That year, the CBCRP began a series of changes to make the process of applying for CRC grants and conducting CRC research more user-friendly to both the community organizations and scientific researchers who make up the research teams.
Beginning in 2003, the CBCRP has offered a technical assistance program geared to interested community agencies and prospective applicants. The application process and application evaluation process were also changed to better suit the community participation research model. During 2005, the CBCRP added teleconference training for community groups and academic researchers interested in applying for CRC awards.
During 2006, the CBCRP held outreach workshops and outreach teleconferences about the opportunity to apply for CRC awards, and also made presentations at community events across the state. Over two dozen teleconferences and site visits provided training and assistance both to research teams who had been awarded grants to plan future research projects, and to teams conducting research.
Over the past year, at major national conferences and in university courses in other states, the CBCRP has also presented results of the Program's research into the effectiveness of community-based breast cancer research. These presentations were based on an evaluation the CBCRP conducted in 2005, which found that the Community Research Collaboration awards empowered communities to address questions important to them. This contrasts with past research in underserved communities, which has often left community members feeling exploited by researchers who come in from the outside and conduct research that leaves the community with no lasting benefit. The evaluation further found that the CRC awards may be the most appropriate and effective way to perform breast cancer research within California’s diverse communities.
As a result of this evaluation, the CBCRP also made two changes during 2006 in the CRC awards:
- The CRC grant amount has been increased to $150,000 for pilot awards and $600,000 for full awards.
- Research teams who have conducted successful projects may now apply for an additional grant of up to $150,000 to disseminate and implement their research results, applying the results to programs, policy, or public awareness.
