CAB Members: Ila Wold, Linda Felix-Monroe, Maria Sierra-Bell, Paula Coombs, Penny Dougherty & Sandi Domingue (Not pictured: Arlene Yee, Cassandra Falby, Martha Tuma & Stacey Tinianov)
Staff: Catherine Thomsen, Janise Roh, Julie Munneke & Virginia Pozo
Zero Breast Cancer (ZBC) has been collaborating on the Pathways Breast Cancer Survivorship study with the Kaiser Permanente Northern California Department of Research for several years. Since 2016, we have been facilitating the creation and meetings of the Pathways Study Community Advisory Board (CAB). The 11 CAB members—8 study participants, a former breast surgeon, a social worker and a community advocate—meet quarterly.
With the CAB, we have three goals: 1. Identify and prioritize research within the Pathways Study; 2. Give input on studies; and 3. Translate evidence to improve survivors’ health and quality of life. The CAB has suggested additional study questions on sleep and quality of life. The many scientists involved in the Pathways Study are very enthusiastic about CAB input, particularly on research priorities.
ZBC engaged the CAB in a regional survivorship needs survey. The members have learned about those results and Pathways Study findings they requested. They also asked and heard about evolving care practices and new education materials used by Kaiser Permanente and other organizations.
As the CAB becomes more informed, they also are focusing an education campaign, especially for people finishing active breast cancer treatment and transitioning into survivorship and for those who support them. Together, we worked together over the past year to develop a process, based on a Centers for Disease Control and Prevention (CDC) Guide, for our campaign.