African-American people in the United States experience significant differences in the prevention, diagnosis, treatment, and outcome of diseases that are closely linked with social, economic, and environmental disadvantages, which in turn are caused by institutional racism (1). These differences are called healthcare disparities. Although major improvements in healthcare disparities have been made in cancer care, significant disparities still remain in many cancer types, including endometrial cancer.
What is Endometrial Cancer?
Endometrial cancer (EC) is a cancer of the lining of the inner wall of the uterus. It is the most common gynecologic cancer and the 4th most common cancer among women in the U.S. Approximately 1 in 37, or 62,000 women will be diagnosed with EC every year.
Racial Disparities in Endometrial Cancer
Although EC has a favorable prognosis overall—over 80% of women are still living five years after diagnosis—the favorable statistics mask a large racial disparity. African-American women diagnosed with EC have a 55% higher 5-year death rate than white women and all other racial and ethnic groups (2), which is one of the largest racial disparities in survival of any cancer.
Barriers to Patient-Research Partnerships in Endometrial Cancer
Despite EC being the most common gynecologic cancer with one of the largest racial disparities in survival of any cancer, there is currently no identifiable patient-centered outcomes research in the field. Although addressing racial disparities and improving patient-centered care cannot be accomplished without the patient’s voice, four significant barriers exist for African-American woman with EC:
- The lack of a visible community of interested patients
- Poor representation of black women in clinical research
- A lack of patient awareness and education about patient-centered outcomes research (PCOR)
- Unknown priorities of African-American women with endometrial cancer
These barriers result in a lack of knowledge of what outcomes matter to this group of women.
Endometrial Cancer Action Network for African-Americans (ECANA)
ECANA is a formalized organization of stakeholders—patients, advocacy leaders, clinicians, and researchers—dedicated to improving outcomes for black women with EC. Our two-year project aims to address barriers to patient-research partnerships by creating a sustainable platform for patient-centered outcomes research in endometrial cancer that is responsive to the needs of African-American women who suffer the most from this condition.
By creating ECANA, our team will build a website in order to provide training to patient partners; engage patients in research prioritization work; and actively work to build strong patient-researcher partnerships. Establishing a multi-stakeholder organization dedicated to African-American women with endometrial cancer fills a critical gap in efforts to address long-standing disparities in endometrial cancer outcomes. The ECANA website will raise the visibility of this cause in a patient-centered way that respects the knowledge and resources of Black women with this disease.
To learn more about this study how to get involved, please contact us.
Research reported in this web page was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (7128-UW).