The term “bittersweet” isn’t one typically associated with healthcare, but for many women today, their healthcare journeys are just that.
Irene O. Aninye, Ph.D.
Chief Science Officer, Society for Women’s Health Research (SWHR)
A woman walks out of her doctor’s office. She sits down — in the lobby, in her car, on a bench — to process what she just heard. She thinks to herself, “They said I have…”
Insert endometriosis or lupus or psoriatic arthritis or narcolepsy or persistent depressive disorder. This is just a short list of chronic health conditions for which many women experience significant delays in diagnosis, and often much longer delays than men.
She feels fearful. She feels confused. She feels overwhelmed. But, she also feels hope and relief, because today’s visit was different. After multiple trips to urgent care, months-long wait times to see different specialists, countless days that turned into years going to work while feeling unwell, and surmounting out-of-pocket costs for medications that were unable to manage her symptoms, today, she finally received an accurate diagnosis — a name to associate with her experience. Now there is hope for a pathway to improve not only her health but also her quality of life.
The importance of women in research
Many factors contribute to the diagnostic delays women experience, including insufficient research funding and prioritization of women’s health issues; historical exclusion of women from medical research; and societal norms and stigma that hinder access and engagement with the healthcare system. As such, preventive care and interventions that address the unique health needs of women are lacking. It is only since 1993, when public law established a precedent mandating the inclusion of women and minoritized populations in clinical research, that the tide for women’s health research began to systemically shift.
Now, over 30 years later, many still fail to realize how essential women are to every corner of the healthcare ecosystem. Women are needed as investigators toward research discovery just as much as they must lead care delivery as healthcare providers. An often-minimized role for women in research, however, is their engagement as participants in clinical studies. Including women in research allows us to effectively study sex differences and learn more about diseases in both men and women alike.
Without the appropriate and safe inclusion of women in medical research, our medications, interventions, clinical guidelines, and basic understanding of human health are compromised, and we are left with persistent knowledge gaps and disparities in health outcomes between women and men. These disparities exist for disease prevalence, time to diagnosis, treatment efficacy, health span, and quality of life. For women of color, women living in rural communities, women at older ages, and pregnant populations, the unknowns about how to effectively diagnose and provide care are compounded in unacceptable proportions.
We must improve
We must include women in research and study sex differences to truly understand the nuances of health and disease. We must empower women to engage the healthcare system at all levels to ensure their best health. We must work with communities safely and transparently, sharing findings and solutions with those who participated in the research. We must eliminate the barriers women experience accessing quality and innovative care. We must continue to invest widely and often in women’s health research to sustain momentum in our progress.
I’ll leave you with this: A clinical study that passively enrolls women does not necessarily meet the standard of inclusivity. If a woman’s participation is not recognized and sex differences are not appropriately reflected in the data analysis, the scientific and healthcare ecosystem will continue to lag. We all have to commit attention and care to valuably including women in research, for as long as it takes to close the knowledge gaps, eliminate diagnostic delays, and empower patients in their care. We have to prioritize resources to advance women’s health until the health of every person is improved. We do this work for ourselves, and we do this work for the woman walking into the doctor’s office right now.