New Tools for Breast Cancer Education
DERT Success Story
The Breast Cancer and the Environment Research Program (BCERP) is co-funded by NIEHS and the National Cancer Institute and supports multidisciplinary scientists, clinicians, and community partners who study environmental exposures that could predispose women to breast cancer. The Program includes support for pilot projects through BCERP Opportunity Funds, which researchers and community partners are using to collaboratively turn breast cancer research findings into creative and effective outreach tools.
Informing young black women about risk
The University of North Carolina (UNC) at Chapel Hill BCERP used Opportunity Funds to develop the interactive website My Breast Cancer Risk that helps young black women understand their breast cancer risk. The site includes an interactive assessment of personal risk factors and videos of physicians, young black breast cancer survivors, and family members of cancer patients who changed their behavior as a result of information about risk factors.
The website grew out of UNC BCERP’s focus on understanding factors that influence premenopausal African-American women’s susceptibility to basal-like breast cancer. The study’s principal investigators Melissa Troester, Ph.D., and Liza Makowski, Ph.D., collaborated with Neasha Graves and Kathleen Gray in the UNC Center for Environmental Health and Susceptibility’s Community Outreach and Engagement Core to convene a community advisory committee to understand the educational needs of young black women and to develop breast cancer education materials suitable for this audience.
Based on what they learned in a series of focus groups with young black women, the UNC BCERP team decided to develop an educational website featuring young black women providing information relevant to them. To build the site, the BCERP team partnered with Brad Hemminger, Ph.D., and graduate students in the UNC School of Information and Library Science (SILS).
“The SILS team helped us understand how audiences use different types of technology and media to get health information,” said Graves. “This project proved to be a wonderful lesson in partnerships. We had resources on campus to create this marriage of breast cancer science, information on black women’s health education needs, and the technical expertise of SILS.” The community advisory committee and other community partners were instrumental in providing feedback for fine-tuning the website, which has received over 10,000 unique visitors since its launch in October 2014.
Providing breast density education
In work supported by BCERP Opportunity Funds, the community-based nonprofit Zero Breast Cancer developed breast cancer educational toolkits that contain a glossary, video, and narrative comic book. The newest toolkit, Breast Density: What Does My Number Mean, provides a basic primer based on research by Zena Werb, Ph.D. and Valerie Weaver, Ph.D, from the University of California in San Francisco (UCSF).
“Around the time we came up with this idea, California passed a law requiring health providers to tell a women in writing if her mammogram revealed that she had dense breasts,” said Janice Barlow of Zero Breast Cancer, who leads the Community Outreach and Translation Core for the BCERP-funded Bay Area Cancer and the Environment Research Center. “Developing this educational toolkit was an opportunity to provide more information about breast density while also translating and disseminating the UCSF research on breast density.”
The toolkit is designed for health care providers and professionals as well as breast cancer advocates and organizations. Key messages include that breast density is one of the strongest risk factors for breast cancer, breast density can only be determined through a mammogram, and additional research may one day make it possible to modify breast density and develop breast cancer prevention strategies and treatment.
The accompanying narrative comic book was translated into Spanish, and the breast density video was posted on the University of California Television website, helping to bring the message to a wider audience.
Reaching underserved groups
A team from the Icahn School of Medicine at Mount Sinai BCERP worked with experienced and passionate breast cancer advocates from Long Island, New York, to develop and implement Advocates Mentoring Advocates, a training program to prepare women from the Witness Project of Harlem to educate underserved groups about breast cancer and the environment.
The project came about when Barbara Brenner, Dr.P.H., who leads community outreach for the Mount Sinai BCERP, identified an opportunity to reach African-American women with a fuller picture of how to reduce their breast cancer risk, beyond mammograms, and check-ups.
Breast cancer advocates Karen Miller and Laura Weinberg mentored the women from the Witness Project, a faith-based breast and cervical cancer education program for African-American women that has a community partnership with Mount Sinai. “I was very impressed with how seasoned Laura and Karen were at articulating breast cancer risk factors in lay-person terms,” said Brenner. Miller is president of the Huntington Breast Cancer Action Coalition, and Laura Weinberg is president of the Great Neck Breast Cancer Coalition, both in Long Island, New York.
Miller said that BCERP Opportunity Funds helped overcome time and funding roadblocks that have kept many interested organizations from adding education about environmental risks for breast cancer into their outreach efforts. The training was delivered through interactive workshops on topics such as breast cancer risks tied to personal care and household products and how to how to communicate information to diverse lay audiences, health care professionals, and decision makers. “It was a very comfortable learning scene, where questions and discussion were encouraged,” Weinberg said.
After the training, the women from the Witness Project of Harlem created their own presentations on breast cancer and the environment, which they have presented to 10 community groups. The BCERP team also collected the workshops into a toolkit that others can use to replicate their model.