The initiative was originally created through funding for a demonstration project from the US Department of Health and Human Services’ Office of the Assistant Secretary of Health’s (OASH) Office on Women’s Health (OWH). Over a period of 3 years from 2022-2025, the Partnering to Navigate PCOS initiative established and evaluated a comprehensive, multidisciplinary PCOS management program at a network of Federally Qualified Health Centers (FQHCs) in central North Carolina. This program allowed patients with PCOS to engage with a primary care provider with expertise in PCOS, a behavioral health provider and a registered dietician on the same day. In addition, patients had access to a Patient Navigator who was trained in ovulation tracking, type II diabetes education/coaching and mental health first aid, to assist them in navigating the health care system and their complex chronic health condition.
The initiative convened a group of Content Matter Experts on PCOS, including one family physician, one general internist, one endocrinologist, and two obstetrician/gynecologists. This group collaborated to create learning modules and clinical support tools to assist primary care providers in diagnosing PCOS and providing patient-centered care focused on the specific concerns of each individual patient. Resources created for health care professionals can be found at https://beforeandbeyond.org/navigate-pcos/.
In addition, Partnering to Navigate PCOS convened a Patient Advisory Board of women with lived experience with PCOS. Through a process of Human-Centered Design, the project team collaborated with these Advisors to create patient-centered Patient Education Handouts on 6 topics related to PCOS. These handouts average a 6th grade reading level, filling a gap in PCOS educational materials for those with low literacy; prior to publication of these materials, a 2023 study found that 75% of online resources about PCOS had a reading level between 9th and 11th grade level. Patient Education Handouts in English and Spanish can be found at https://showyourlovetoday.com/navigate-pcos/.
The Partnering to Navigate PCOS team is exploring avenues to continue this critical work to educate health care professionals and implement comprehensive, multidisciplinary care for PCOS in a variety of clinical settings. If you are interested in partnering with us in the future or establishing a similar PCOS management program in your setting, please email Jaimie Lea at jaimie@med.unc.edu.
