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. The CBCRP has been in the forefront of a nationwide trend among research funding agencies toward a greater voice for the people facing the disease in their day-to-day lives. The CBCRP still sets the standard for including advocates at all levels of all of the phases of research funding.
Breast Cancer Advocates in Leadership
Breast cancer advocates—survivors of the disease and leaders of breast cancer advocacy organizations—play a leadership role in the CBCRP. Breast cancer advocates:
- Comprise one-third of the CBCRP’s 16-member council, the group that makes the final selection of research projects the CBCRP funds. An advocate serves as the council’s Chair or Vice-Chair
- Serve on review panels, along with scientists, who rate all research proposals submitted to the CBCRP for scientific merit prior to selection of research by the CBCRP's council. Out-of-state advocates are full voting members of the panels and a California advocate observes each one
- Are involved in setting priorities for the CBCRP's research funding
- Serve on advisory groups guiding the CBCRP's program initiated research
Communities Conducting Research
Breast cancer advocates are also investigators on a rising number of the CBCRP’s research projects. In 1997, the CBCRP pioneered our Community Research Collaboration awards. These grants allow community groups and breast cancer advocacy organizations to team up with experienced scientists to pursue a research idea of importance to the community in a scientifically rigorous way. Community Research Collaboration (CRC) awards are open to nonprofit organizations or ad-hoc community groups in any California community affected by breast cancer.
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 approach to breast cancer research in California. The Community Research Collaboration awards have provided nearly $18 million in funding to 70 collaborative projects conducted by 61 different California institutions and community groups. Projects funded over the years include:
- Determining whether Vietnamese nail salon workers have higher breast cancer rates and whether their workplace exposures to toxic substances exceed health-based standards
- Developing and testing culturally-appropriate breast health care and breast cancer education for women in a number of California communities, including Native American women; immigrant Afghan, South Asian, Hmong, and Slavic women; and Samoan American, Korean American, and older Thai American women
- Educating African American and Hispanic women about the importance of participating in breast cancer clinical trials and developing tools for an educational program entitled Scientific Literacy and Breast Cancer Clinical Trials Education Program
- Determining the benefits of peer-led African American support groups to address the unmet needs of African American women with breast cancer in an underserved geographic area
- Assessing the benefits and acceptability of a videoconferencing support group for rural and isolated women
- Evaluating an ethical will intervention for underserved women at end of life
- Identifying barriers to survival in the Latina population
- Exploring breast cancer risk factors of lesbians and heterosexual women
- Testing complementary and alternative medicine approaches to improving the quality of life of breast cancer survivors through mindful movement programs
The CBCRP’s Community Research Collaboration awards are designed to have an impact on breast cancer health care:
- We funded the first-ever research into appropriate breast health and breast cancer education for a community that has been left behind in the fight against breast cancer: Deaf and Hard of Hearing women. Deaf/Hard of Hearing are often poor, with, on average, a fifth grade reading level. This community has little awareness of the breast cancer education and services available to hearing women. Heidi Booth of the Greater Los Angeles Council on Deafness collaborated with Barbara Berman, Ph.D., of University of California, Los Angeles to develop, validate, and distribute a tailored breast health educational program for Deaf/Hard of Hearing women. The program includes a workshop, group discussion, a signed/captioned DVD, and written materials. This research can provide other agencies serving Deaf/Hard of Hearing women with a breast cancer education program never before available.
- Women with low incomes who are also ethnic minorities are diagnosed with breast cancer at relatively later stages and have lower rates of survival. But most end-of-life research has focused on white, middle-class patients. Kendra Stone of the Charlotte Maxwell Complementary Clinic and Shelley Adler, Ph.D., of University of California, San Francisco found, in their CBCRP-funded research, that quality of life issues such as meaning and purpose were important to low-income, ethnic minority women at the end of life. The researchers developed and successfully tested an intervention—the construction of an ethical will. An ethical will is an enduring document that expresses an individual's experiences, life lessons, values, hopes, and loves. Ethical wills are typically made by middle- and upper-class people. In this study, women terminally ill with cancer met with a trained interviewer to record material for their ethical will, then edited it jointly with the interviewer. This is one of the first successful interventions shown to address existential suffering at the end of life for underserved women with breast cancer.
Fostering Community-Based Research
The CBCRP has taken major steps to enable diverse populations in California to take part in quality scientific research into breast cancer issues of interest to their communities. These efforts included making the application process for the Program's Community Research Collaboration grants more user-friendly. The CBCRP also conducts technical assistance to community groups and scientists interested in collaborating on scientific research. This assistance includes webinars, where a slide presentation provided over the Internet is combined with a teleconference, and one-on-one training.
During 2010, the National Institutes of Health (NIH) recognized the CBCRP's leadership in community-based participatory research by funding the CBCRP to establish a larger outreach effort and a more in-depth training program in California. In collaboration with the nonprofit organization Commonweal, the CBCRP's Community-Based Research Infrastructure to Better Science (CRIBS) will stimulate California community organizations to collaborate with scientific researchers in two research areas: the environmental causes of breast cancer and the reasons why some groups of women are more likely to get or die from the disease. The CRIBS project will create an infrastructure for community-based participatory research using intensive training, technical assistance, and a Web-supported learning community.
In recognition of her leadership in community breast cancer research, during 2010 the CBCRP’s Director, Dr. Marion H.E. Kavanaugh-Lynch, co-chaired the National Institutes of Health, National Cancer Institute, Special Emphasis Panel on Community Networks Program (CNP) – Centers for Reducing Disparities through Outreach, Research and Training (U54) and served on the National Institutes of Health, Center for Scientific Review, Special Emphasis Panel/Scientific Review Group on Building Sustainable Community-Linked Infrastructure to Enable Health Science Research.
During 2011, the CBCRP will continue to facilitate diverse communities in California taking part in quality scientific breast cancer research and to take leadership in community-based participatory research.