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.
Our project will take place in four phases:
Phase I: Stakeholder Recruitment (December 2017 – February 2018)
Our current primary project team brings together members of the patient, community advocacy, research, and provider communities. The first priority of work is to recruit more African-American women with endometrial cancer to the steering group. We will accomplish this by using the networks of our team members.
Phase II: Website Creation & Soft Launch (June – November 2018)
Based on feedback from the steering group, the website will be created with the key functions represented: community building; PCOR education and training for patient advisors; and solicitation of research priorities, including feedback on those currently published.
Phase III: Patient-Generated Research Prioritization & ECANA Conference (December 2018 – March 2019)
We will organize patient survey results by topic and conduct a comprehensive literature review to identify research gaps. In this process, we will also identify patient educational needs on topics that may be well-researched but still unknown to most patients.
The 1st annual ECANA Conference will be in March 2019 at the 50th Annual Meeting on Women’s Cancer. The goals of this conference will be to report and prioritize patient-generated endometrial cancer research interests, to identify potential funding mechanisms for PCOR and ECANA, and to formalize the ECANA organization and management plan.
Phase IV: Patient-Researcher Connections (July – November 2019)
Following the ECANA Conference, the Top Ten Endometrial Cancer Research Priorities of African-American Women will be highlighted on the website. The final website update will create the bridge between patients and researchers in three steps: a formalized training curriculum to become an EC patient research partner (patient advisor); a mechanism for researchers to submit and post projects for interested patients; and the ability for patient advisors to sign up for projects of interest.
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).