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 fourteen-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 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 over $14 million in funding to 59 collaborative projects. Projects funded over the years include:
- Investigating immigrant Afghan women’s concerns, knowledge, attitudes, behaviors, and sources of information about breast care, and perceived barriers to care, as well as cultural modifications needed to adapt breast cancer-related education programs for this 18 group. Information learned from the project has the potential to increase breast health awareness among immigrant Afghan women and also other groups of Muslim women in California and the U.S.
- 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 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.
- Determining whether Vietnamese nail salon workers have higher breast cancer rates and whether this group of women are exposed to workplace exposures that exceed healthbased standards.
- Breast cancer risk factors of lesbians and heterosexual women.
- Culturally-appropriate 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:
- The San Joaquin Valley Health Consortium and California State University, Fresno are completing a pilot project to identify barriers in the Fresno County health care process that lead to some groups of women receiving less than optimal and complete breast cancer care. Based on their findings, they intend to design a navigation service that will assist breast cancer patients with accessing health care and making treatment decisions in a manner that responds to the diversity within the community and health system. The pilot project will prepare for a larger research project that tests the health and cost impacts of this navigation service.
- Patient navigators—who provide support, information, and advice to women about breast cancer treatment options and accessing services—need ways to exchange experiences, explore resource sharing, and measure the benefit and quality of services they provide. The Alta Bates Medical Center in Berkeley used a CBCRP grant to bring providers of breast cancer navigation services together for a full-day conference. Navigators were encouraged to network and share research. The conference also facilitated documentation and measurement of navigation services to provide both resources for new navigation programs and evidence-based literature on the value of these services.
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 2007 with the CBCRP receiving a record of 26 applications for CRC grants, the largest number in the eleven years the Program has offered this type of grant. 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. 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 and 2007, 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, the CBCRP highlighted funded CRC grantees during its 2007 symposium. A breakout session presented research on Services and Support for the Underserved. A workshop was devoted to the Theory and Practice of Community-based Participatory Research, the theoretical model upon which the CBCRP's Community Research Collaborations are based. The workshop drew a record number of attendees, many from non-breast cancer specific organizations who were interested in learning more about community-based participatory research.
During 2007, at major national and international conferences, the CBCRP also presented results of the Program's research into the effectiveness of community-based participatory breast cancer research. In 2007, the CBCRP made a presentation alongside funded grantees to an international audience at the 10th Annual Community Campus Partnership for Health Conference in Toronto, Canada. The presentation, Funders, Communities, & Academia: Creating Authentic Partnerships, was well received and demonstrated a unique relationship between funders and grantees as an important element of community-based participatory research.
Other CBCRP presentations at conferences during 2007 were based on an evaluation conducted by the CBCRP that 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 left out 20 of the process, results and potential benefits by scientists 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.
The CBCRP published its third evaluation of the CRC Awards in 2007. Results from this evaluation found that research teams that more closely reflected authentic partnerships had the most successful outcomes evident from their research project and partnership. For more on this evaluation, see the section of this report titled, "Improving the CBCRP Through Evaluation."
As a result of the CBCRP's leadership in community-based participatory research, the Program's Director, Dr. Marion H. E. Kavanaugh-Lynch, serves as the chair of a National Institutes of Health committee that reviews that agency's funding for community-based participatory research.
During 2008, 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.
