When Aimee Osgood, dean’s office assistant in the School of Nursing, was repeatedly told by clinicians that she was “too young” for the health issues she was experiencing, she realized a systemic failure — medical knowledge and practice were lagging behind patient reality. 

Rather than accept incomplete answers, Osgood turned to published research to try and make sense of what she was experiencing. She later established a patient advocacy and education organization, translating complex medical information into clear, actionable content and guiding others to qualified specialists to receive accurate diagnoses and effective care. 

Through poster presentations, conference lectures and patient navigation work, Osgood championed the value of patient experience and expertise in medicine. Yet one major hurdle remained: A clinical system that routinely dismissed patients based on a flawed diagnostic label, Genitourinary Syndrome of Menopause (GSM). 

A case of patient-led leadership

GSM encompasses a cluster of painful physical symptoms caused by a lack of essential hormones like estrogen and testosterone in the pelvic region. When medical bodies introduced the term in 2014 to replace the stigmatizing label "vaginal atrophy," they wanted a broader, more accurate medical definition. 

Yet adding the word menopause inadvertently built a barrier to care. It trained clinicians to treat a purely physiological, hormone-driven condition as an age-restricted issue, blinding the medical community to the fact that younger women, cancer survivors, postpartum patients and patients taking various medications routinely suffer from this condition. 

To address this, Osgood put patient advocacy into action by forming an international task force composed of world-renowned experts in sexual medicine, gynecology and urology. 

The group recently published the paper “Redefining genitourinary syndrome: A proposal to expand the GMS nomenclature to encompass the full spectrum of hypoestrogenic and hypoandrogenic urogenital disorders,” proposing dropping the word menopause to redefine the condition as Genitourinary Syndrome. 

This publication represents a broader paradigm shift in medical research. Major research bodies and journals increasingly recognize that integrating patient expertise into research committees, patient peer reviews and editorial boards ensures that scientific progress stays aligned with real-world clinical needs. 

“Involving patients in research design creates a powerful downstream effect throughout the entire medical system, shaping more accurate study questions and outcomes, driving clearer diagnostic criteria, and accelerating the creation of effective treatments.”

Securing an official diagnostic update from major medical bodies would be a milestone legacy. But for Osgood, preventing others from experiencing what she has endured is her deepest motivation. 

By bridging the gap between clinical research and lived experience, Osgood’s work ensures that fewer patients are left to navigate health crises alone, turning years of personal hardship into a lasting lifeline for others.