MHQP Receives PCORI Award to Help Advance Equity in Endometriosis Care for Black Women
(January 2024)
MHQP is pleased to announce that, in partnership with the Endometriosis Association, we have received a funding award through the Eugene Washington PCORI Engagement Award Program, an initiative of the Patient-Centered Outcomes Research Institute, to identify new research directions to reduce disparities in endometriosis care for Black women, as part of our growing health equity portfolio.
Endometriosis is a painful disorder that affects approximately 6.5 million women in the United States[i]. Tissue similar to the lining of the uterus grows outside the uterus, often leading to severe pelvic pain, painful periods, and sometimes infertility. Inadequate understanding of this disease leads to delayed diagnosis and limited treatment options.
Black women and girls experience notable disparities in endometriosis care ― delayed diagnoses[ii], reduced access to minimally invasive procedures[iii], and increased postoperative complications[iv], likely rooted in stereotypes regarding Black patients’ pain tolerance[v], providers’ implicit and explicit biases[vi], and disparities in access to health care[vii].
While these inequities are well-documented, there has been limited research exploring potential interventions to reduce disparities in endometriosis care. This project aims to address this research gap, building on MHQP’s portfolio of work to reduce racial inequities in pain care. In 2021, MHQP launched the Pain Inequities Project to help understand and address the issue that Black women are systematically undertreated for pain. In 2022 and again in 2023, MHQP partnered with the Massachusetts Sickle Cell Association to seek new research directions for sickle cell disease pain care, specifically on the topics of pain self-management and pain crisis care.
MHQP and the Endometriosis Association will be convening Black women with endometriosis, caregivers, providers, researchers, and payers. They will jointly determine a future research agenda and create a roadmap which includes specific patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) questions designed to enable the implementation of effective interventions to achieve the outcomes important to these patients.
“Endometriosis care offers one more example of the disparities present in our healthcare system,” said Natalya Martins, MHQP’s Vice President of Programs. “Addressing this problem begins with listening to the diverse perspectives of multiple stakeholders to create a meaningful research agenda that will help us identify the best ways to improve endometriosis care for Black women.”
“We look forward to working with MHQP on this important initiative,” said Mary Lou Ballweg, President of the Endometriosis Association. “Our goal is for every girl, woman and family affected by endometriosis ― regardless of their race or ethnicity ― to have the support, knowledge and help they need to secure accurate, early diagnosis and effective treatment for this chronic, painful and complex disease. We believe this project will take important steps toward that goal.”
PCORI is an independent, nonprofit organization authorized by Congress with a mission to fund patient-centered comparative clinical effectiveness research that provides patients, their caregivers and clinicians with the evidence-based information they need to make better informed health and healthcare decisions.
If you would like to learn more and potentially participate in this project, please contact Natalya Martins at nmartins@mhqp.org.
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[i] Ellis, K., Munro, D., & Clarke, J. (2022). Endometriosis Is Undervalued: A Call to Action. Frontiers in Global Women’s Health, 3, 902371. https://doi.org/10.3389/fgwh.2022.902371
[ii] Li, R., Kreher, D. A., Gubbels, A. L., & Benjamin, A. R. (2021). Prevalence and time of diagnosis of endometriosis across racial and ethnic groups in the US. MedRxiv. https://doi.org/10.1101/2021.07.28.21261303
[iii] Orlando, M. S., Luna Russo, M. A., Richards, E. G., King, C. R., Park, A. J., Bradley, L. D., & Chapman, G. C. (2022). Racial and ethnic disparities in surgical care for endometriosis across the United States. American Journal of Obstetrics and Gynecology, 226(6). https://doi.org/10.1016/j.ajog.2022.01.021
[iv] Westwood, S., Fannin, M., Ali, F., Thigpen, J., Tatro, R., Hernandez, A., Peltzer, C., Hildebrand, M., Fernandez-Pacheco, A., Raymond-Lezman, J. R., & Jacobs, R. J. (2023). Disparities in Women With Endometriosis Regarding Access to Care, Diagnosis, Treatment, and Management in the United States: A Scoping Review. Cureus, 15(5), e38765. https://doi.org/10.7759/cureus.38765
[v] Hoffman, K. M., Trawalter, S., Axt, J. R., & Oliver, M. N. (2016). Racial bias in pain assessment and treatment recommendations, and false beliefs about biological differences between blacks and whites. Proceedings of the National Academy of Sciences of the United States of America, 113(16), 4296–4301. https://doi.org/10.1073/pnas.1516047113
[vi] Bougie, O., Nwosu, I., & Warshafsky, C. (2022). Revisiting the impact of race/ethnicity in endometriosis. Reproduction & fertility, 3(2), R34–R41. https://doi.org/10.1530/RAF-21-0106
[vii] Schoenthaler A., & Williams N. (2022). Looking Beneath the Surface: Racial Bias in the Treatment and Management of Pain. JAMA Netw Open, 5(6):e2216281. doi:10.1001/jamanetworkopen.2022.16281