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 including 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 fifteen-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 multi-year effort to investigate the environmental causes of breast cancer, the reasons why some groups of women bear a greater burden of the disease, and the intersections of complex factors that impact breast cancer.
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 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 60 collaborative projects. Projects funded over the years include the following:
- 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 survivorship 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 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 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:
- 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 will now develop, implement, and evaluate breast cancer promotora programs at two primary care clinics in Alameda serving Latinos.
- It is not enough to help patients prepare a list of questions before meeting with a breast care specialist, because the answers they receive can be overwhelming. Jeffrey Belkora, Ph.D., at the University of California, San Francisco, Sara O’Donnell, at the Mendocino Cancer Resource Center, Mendocino, and Dawn Elsbree, at the Humboldt Community Breast Health Project, Arcata, investigated which procedures best help patients absorb, remember, and act upon the information and advice they get from breast specialists. Their survey included doctors, community health agency staff, and diverse (Native American, Latina, and white) breast cancer survivors. It revealed that specific changes to the physical infrastructure; institutional policies; and patient, doctor, or accompanier practices or behaviors could improve interactions. This work could lead to new programs that help patients, accompaniers, and their doctors make the most of consultations leading to major treatment decisions.
Fostering Community-Based Research
The CBCRP has taken major steps over the past five 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 2008 with the CBCRP continuing to receive a high number of applications for Community Research Collaboration grants. The scientific quality of these applications was also very high. The CBCRP funded six community research collaboration projects which cover a wide range of under-studied research topics.
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 through Spring of 2008, 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. Funded CRC teams participated in the outreach workshops, sharing their experiences and the challenges they faced working together. Attendees gave positive feedback about the funded research teams’ role in the outreach workshops and reported that they learned from these funded teams. Over two dozen teleconferences and site visits also provided training and assistance both to research teams who had been awarded grants to plan future research projects, and to teams conducting research. In addition, during 2007 and 2008, at major national and international conferences, the CBCRP presented results of the Program’s research into the effectiveness of community-based participatory breast cancer research. Beginning in June 2008 training and outreach were conducted only via teleconference, a modification made necessary by changes in the CBCRP’s staff. The CBCRP also streamlined the CRC application process. Some parts of this process were found helpful by only a portion of applicants, so those parts have been made optional.
In recognition of her leadership in community breast cancer research, the CBCRP’s Director, Dr. Marion H.E. Kavanaugh-Lynch, received the Bay Area-based nonprofit organization Zero Breast Cancer’s 2008 Honor Thy Healer Award.
During 2009, 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.
