ZBC is honored to bring together many agencies partnering to better meet the needs of people who have finished active breast cancer treatment. Beginning in 2015, we convened a diverse group of survivors, advocates, community service providers, patient navigators and clinical care providers from around the San Francisco Bay Area and Mendocino (see list below) for the Breast Cancer Survivorship Navigation Project (BCSNP).
Together, we are seeking ways to improve the quality of life of under-served breast cancer survivors and reduce the risk of cancer recurrence. We call our group the Breast Cancer Survivorship Navigation Collaborative (BCSNC). Our group chose to focus on racial/ethnic minorities, gender/sexual minorities and people who have lower incomes. In order to understand the unmet needs experienced by these survivors, in 2017, member organizations developed a survey in English, Spanish and Chinese to ask about their experiences and ideas for improvement.
In 2018, participating organizations asked patients and survivors to answer our questions. We compiled and analyzed the 62 responses, then presented a draft report to respondents and patient navigators. Their input was incorporated into the final patient engagement report, which you can read here. Mental health and cognitive effects of treatment were two of the largest needs identified by the diverse women who participated. Many also reported that the physical side effects of treatment needed more attention and some wanted more information about healthy living (nutrition, stress management, exercise, etc.).
Check out our Survivorship Resources for links to specific information and some great sites for those who have ever been diagnosed with breast cancer and those who love them.
This project began in 2014, when the breast cancer care, support and research communities were beginning to talk about implementation of survivorship care plans (SCPs). SCPs were just emerging as a tool to list cancer treatments in order to help survivors and their health care providers track needed follow-up including medical care, self-care and resources. Many of us were concerned about the potential usefulness of SCPs for patients with lower (health) literacy.
In 2015, we received our first Pipeline to Proposal (P2P) award from the Patient Centered Outcomes Research Initiatives (PCORI) to identify how SCPs were being used locally and to explore related research. Through in-person meetings and work between gatherings, we established a strong, cohesive and committed group. The BCSNP received two more P2P awards (the maximum possible); funding ended in July 2018. Over the course of the project, the Collaborative shifted focus from SCPs to other interventions to support under-served patients transitioning out of active treatment.
BCSNP Steering Committee Members and Organizations Represented
Alison Gause, Marin General Hospital
Barbara Cicerelli, Zuckerberg San Francisco General
Carmen Ortiz, Circulo de Vida
Cassandra Falby, Women's Cancer Resource Center
Catherine Thomsen, Zero Breast Cancer
Gabriella Heinsheimer, Charlotte Maxwell Complementary Clinic
Judith Harkins, Shanti's Margot Murphy Women's Cancer Program
Karen Oslund, Cancer Resource Centers of Mendocino County
Leah Kelley (Advisor), Marin General Hospital
Lei-Chun Fung, San Francisco Department of Public Health, Chinatown Public Health Center
Niharika Dixit, Zuckerberg San Francisco General
Oliva Fé, Latina Breast Cancer Agency
Priscilla Banks, University of California San Francisco, Comprehensive Cancer Center
Roxanna Bautista, Formerly of Asian Pacific Islander American Health Forum
Sara O'Donnell, Formerly of Cancer Resource Centers of Mendocino
Stacey Tinianov, Bay Area Young Survivors (BAYS)
Ysabel Duron, Latino Cancer Institute, Formerly of Latinos Contra Cancer