Background: Endometrial cancer (EC), a cancer of the lining of the uterine wall, is the fourth most common cancer among US women. Overall, EC has an excellent survival rate of over 80 percent at five years—but this is not the case for African-American (AA/black) women. Black women die at up to three times the rate of white women, and this racial disparity is one of the worst of all cancer types in the United States. To address such healthcare disparities, engagement with patients is critical. Yet, a major gap exists. Although black women are the subject of EC disparities research, there is currently no mechanism to have their voices, experiences, and priorities heard.
Proposed Solution to the Problem: The project team’s proposed solution will build the infrastructure for the Endometrial Cancer Action Network for African Americans (ECANA), a formalized organization of stakeholders (patients, advocacy groups, clinicians, and researchers) dedicated to improving outcomes for black women with EC. The ECANA website will be a platform for ongoing patient training and engagement.
- Create ECANA, a formal organization of patients, caregivers, clinicians, and researchers to facilitate patient-centered research in endometrial cancer disparities
- Build a website for patients that will provide training to create patient partners for endometrial cancer research, allow for patients to prioritize their research interests, and serve as an active link to connect researchers to interested patient partners
- Update and adapt recently published priorities in endometrial cancer research to include the input of African-American patients
Patient and Stakeholder Plan: The ECANA project brings together patients, clinicians, community groups, and the professional organization of endometrial cancer researchers in a meaningful, equitable partnership. Our steering group consists of Kemi Doll, MD, MSCR (project lead, EC disparities researcher), several black women with EC, public health staff from the University of Washington, and leaders from community organizations focused on cancer among black women (Color of Teal and Cierra Sisters).
Project Collaborators: The executive leadership of the Society of Gynecologic Oncology serves as our primary organizational partner.