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 twelve-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.
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.
Advocates Doing 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.
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
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.
- 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. The completion of the BHAWD manual will provide a practical resource to disseminate the program’s successes, and to replicate it at disability and breast cancer screening programs.
Fostering Community-Based Research
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 $8 million in funding to 39 collaborative projects; however, research on the effectiveness of this type of science-community partnership itself is limited. To fill this gap in scientific knowledge, and to improve the community-based program, the California Breast Cancer Research Program contracted with Leading Spirit Inc. to conduct an evaluation of the CBCRP’s Community Research Collaboration awards program.
The evaluation 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. Other findings include:
- Participating in Community Research Collaboration projects provides benefits to community agencies.
- Collaborations between scientists and community members improve the quality of research.
- Collaborative research projects funded by the CBCRP have had an impact on scientific knowledge, community programs, public policy, community agencies, community members, and academic researchers.
- The CBCRP should consider ways to improve the research teams’ collaboration on data analysis and publication of scientific articles.
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 have also been 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 Community Research Collaboration awards. As a result of this multi-year process, applications for Community Research Collaboration awards have continued to increase, and the CBCRP has been able to fund more of these grants. During 2005, the CBCRP received a record of 35 concept papers, which are required before application, an increase of almost 400 percent since 2002.
In 2006, the CBCRP is taking on a new challenge: encouraging and supporting the dissemination and implementation of evidence-based interventions and materials proven in Full CRC awards to other community groups and agencies. Collaborations that have successfully completed a full award and have results (i.e., interventions, educational materials) that can be exported to others can receive up to $150,000 in additional funds to apply their research results to programs, policy, or public awareness.
