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 facing the disease in their day-to-day lives. The CBCRP still sets the standard for including advocates at all levels of leadership.
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.
- Prior to selection of research by the CBCRP's council, all research proposals submitted to the CBCRP are rated for scientific merit by out-of state panels of scientists and advocates. Advocates are full voting members of the panels and a California advocate observes each one.
- Advocates are involved in setting priorities for the CBCRP's research funding.
- Advocates took part in the development and leadership of the CBCRP's Special Research Initiatives, a multi-year effort to investigate the role of the environment in breast cancer and the reasons why some groups of women bear a greater burden of the disease.
Leadership from breast cancer advocates ensures that the CBCRP funds research important to the people most affected by the disease.
Communities Conducting 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 to pursue a research idea of importance to the community in a scientifically rigorous way. 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 nearly $16 million in funding to 61 collaborative projects. Projects funded over the years include:
- Determining whether Vietnamese nail salon workers have higher breast cancer rates and whether this group of women’s workplace exposures to toxic substances exceed healthbased standards
- Investigating immigrant Afghan women’s concerns, knowledge, attitudes, behaviors, and sources of information about breast care, and perceived barriers to care
- 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
- Development of effective breast cancer education tools for South Asian immigrant women
- Determining the benefits of peer-led African American support groups to address the unmet needs of African American women with breast cancer in a geographically underserved 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 by assessing knowledge, attitudes, beliefs, experiences, and needs in terms of planning for and accessing medical care for surveillance, monitoring, and management of cancer and non-cancer medical issues
- Testing complementary and alternative medicine approaches to improving the quality of life of breast cancer survivors through mindful movement programs
- Breast cancer risk factors of lesbians and heterosexual women
- Culturally-appropriate breast cancer health care for Samoan American and Korean American women
- The effectiveness of “peer navigators,” trained volunteer breast cancer survivors who help newly-diagnosed women understand decisions about treatment and 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 American women
- The barriers to older Thai American women participating in breast cancer screening
The CBCRP’s Community Research Collaboration awards are designed to have an impact on breast cancer health care:
- Prior to research funded by the CBCRP, no study had investigated whether immigrant Hmong women in the U.S. were getting mammograms to detect breast cancer. Breast cancer was also the leading cause of cancer death in Asian American and Pacific Islander women as a whole. The CBCRP funded a research collaboration between Marjorie Kagawa-Singer, University of California, Los Angeles, School of Public Health, Mary Anne Foo, Orange County Asian & Pacific Islander Health Alliance, and Sora Park Tanjasiri, University of California, Irvine to address this issue. The research team tailored a culturally-relevant outreach and health education program to motivate Hmong women to increase breast cancer knowledge and obtain mammograms. Simultaneous outreach and education of Hmong men was critical, because it built on Hmong decision-making styles and the Hmong cultural strengths of social support and family integrity. The number of Hmong women who had heard of mammograms and obtained them during the study period nearly doubled after the health education program. The CBCRP has funded community-based studies with many of California's at-risk populations, including: African American, American Indian, deaf and hearing impaired, Latina, lesbian, Samoan, and immigrant Afghan, Chamorro, Korean, Slavic, South Asian and Vietnamese communities.
- Lay health workers, also known as promotoras, are widely used in community clinics as a valuable link between the health care system and the Latino community. However, promotora programs vary significantly, and there is little research that identifies common challenges and synthesizes their solutions. Rena Pasick, Dr.P.H., at the University of California, San Francisco, and Peggy McGuire at the Women’s Cancer Resource Center, Oakland, conducted a preliminary study of promotora programs in Alameda County. They found that lay health worker programs empower promotoras, increase community awareness of specific health issues and access to health care, and foster social change. The research team is now developing, implementing, and evaluating breast cancer promotora programs at two primary care clinics in Alameda serving Latinos.
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 conducted technical assistance to community groups and scientists interested in collaborating on scientific research, including:
- Presentations at California community events about the opportunity to receive funding for collaborative research.
- Teleconference training for interested teams of community group members and scientists.
- Outreach workshops where previously funded Community Research Collaboration teams shared their experiences and the challenges they faced conducting research together.
These efforts resulted in the number of applications for Community Research Collaboration grants rising from five in 2003 to a high of 26 in 2007. The scientific quality of these applications was also very high. The CBCRP funded six of these applications, covering a wide range of under-researched breast cancer topics. After reaching this peak in 2007, the CBCRP faced staffing changes. The Program had to reduce, and then eliminate, technical assistance to applicants for Community Research Collaboration grants. Applications dropped to 14 in 2008, and to just 4 in 2009. The CBCRP funded only one of these four applications.
The CBCRP is determined to reverse this downward trend and encourage more applications for community-based research collaborations for 2010 and future years. In fall 2009, the CBCRP resumed providing targeted technical assistance to interested teams of scientists and members of community groups. This assistance included one-on-one training and webinars, where a slide presentation provided over the Internet is combined with a teleconference.
In recognition of her leadership in community breast cancer research, during 2009 the CBCRP’s Director, Dr. Marion H.E. Kavanaugh-Lynch, was appointed to and served on the National Institute of Health, National Center on Minority Health and Health Disparities, Special Emphasis Peer Review Panel on Community-based Participatory Research.
During 2010, 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.
