From data gaps to distrust: Cracks in women’s health literacy and the path forward
Health literacy is power to understand our bodies, navigate healthcare, and advocate for ourselves. Centuries of exclusion, stigma, and underinvestment have left women not only with poorer outcomes but with the burden of piecing together their own understanding. In today’s information age, where TikTok videos and Reddit threads often speak louder than journal articles, the challenge isn’t just access to information; it’s knowing what, and who, to trust.
The gaps we don’t talk about
During my years in medical school, what stands out most is not what I learned but what I didn’t. Women’s health teaching was fragmented and compartmentalised, leaving little space for the messy reality of conditions like endometriosis, infertility, and perimenopause. Even recognising and diagnosing these conditions was difficult, but helping patients truly understand their health was a separate, equally challenging task.
On the wards, this gap became impossible to ignore. I saw women’s pain dismissed, their concerns minimised, and patients sent home with “normal” scans despite ongoing suffering. Many had vague, overlapping symptoms; fatigue, pelvic pain, bloating, irregular cycles, mood changes that didn’t fit neatly into a diagnostic checklist. These complexities left too much room for misunderstanding, delay, and dismissal.
That unease stayed with me and it pushed me to explore these issues in my master’s research, where I studied informed consent and saw how true consent is impossible without clear, accessible information. Yet even as health content grows, so much of it is buried in jargon, hidden behind paywalls, or scattered across Tiktok and instagram where accuracy isn’t guaranteed. Women are left to navigate this overwhelming landscape, piecing together information in order to advocate for themselves.
And it hit me. There are two sides to this coin.
The quality and effectiveness of healthcare itself: the tools, research, and systems we use in women’s health.
The quality of information: its accessibility, clarity, and ability to empower people to understand and advocate for themselves.
Both matter. One without the other leaves women lost.
When systems fail, trust fractures
Caroline Criado-Pérez captured it perfectly in Invisible Women:
“When your big data is corrupted by big silences, the truths you get are half-truths, at best. And often, for women, they aren’t true at all.”
Those silences are everywhere. Research trials have long treated men as the default, skewing everything from diagnostic criteria to drug safety. Endometriosis remains underfunded and widely misunderstood, with an average time to diagnosis of 8 years and 10 months Endometriosis UK.
This slow erosion of trust pushes women out of formal healthcare systems to take matters into their own hands. Turning to friends and families, online communities, apps. Health literacy, rather than being supported by healthcare professionals and clear resources, has become something women are expected to build alone.
Measuring the gaps: What women know (and don’t)
One of the clearest illustrations of this gap is fertility awareness. A recent Hertility study of over 135,000 UK women found that more than 80% reported at least one reproductive or thyroid symptom — yet many of these women had received little or no guidance on what those symptoms meant or how to seek care. Among women trying to conceive, over a third had a BMI over 30, and many reported regular alcohol or nicotine use, reflecting a lack of accessible preconception education and support (O’Neill et al., 2023).
Flo Health’s literacy report adds to this picture:
58% of women don’t know what a normal menstrual cycle looks like.
63% of 18–24-year-olds say they learned more about their reproductive health from social media than from school.
93% can’t name all phases of their menstrual cycle (Flo Health Literacy Report).
And the gaps don’t close with age. A UCL survey of postmenopausal women found that over 90% had never received any education about menopause at school, only 39% felt informed about the transition, and 62.7% said menopause information was difficult to access.
Together, these findings show that reproductive and hormonal health literacy is consistently poor across a woman’s entire lifespan.
Navigating the information age
In this vacuum, women have turned elsewhere. According to The Department of Health and Social Care, 74% rely on friends and family, 71% on Google, and 69% on blogs or online articles. Only 59% consult a GP first, and for younger women, social media is often their primary source of health advice.
Platforms like TikTok and Reddit offer connection and validation, but they also allow misinformation to spread faster than any evidence-based guideline. A viral claim that “HRT causes cancer” or that “endometriosis pain is normal” can shape decisions far more than a carefully written, medically reviewed page buried three clicks deep.
We live in a world where access to information is unlimited but trust is scarce. Health literacy today is no longer about finding information; it’s about learning how to evaluate it.
Health literacy as justice
Health literacy is shaped by the systems surrounding individuals. Marginalised women, including women of colour, migrants, and those from lower-income communities, face the steepest barriers: fewer tailored resources, language obstacles, limited access to care, and lower trust in health services (King’s Fund, Electron J Gen Med, 2025).
As the Flo Health report notes:
“Lack of cultural inclusivity and socioeconomic barriers leave marginalised groups with larger gaps in reproductive health knowledge.”
These inequities are compounded by digital exclusion. According to NHS England, 43% of adults in England struggle with low health literacy, a figure that rises to 61% when numbers are involved. Around 7% of households have no internet access, and 10 million adults lack basic digital skills, making it difficult for many to navigate NHS services online or access accurate health information in a meaningful way. When health literacy is uneven, so are health outcomes.
Building a system that listens
We need to:
Create plain-language resources that make medical information genuinely understandable while remaining evidence-based and trustworthy.
Start education early to normalise conversations about reproductive health and empower people with accurate knowledge from a young age.
Invest in digital tools that offer accessible, medically reviewed information to help people take action on their health.
Close digital and language gaps by providing translation, offline materials, and telehealth services so that no one is left behind.
The cracks in women’s health literacy are the result of decades of neglect, exclusion, and stigma. Repairing them will take more than leaflets, search bars, or awareness campaigns it will take healthcare systems built with women at their centre, research that reflects lived experiences, and information that is as engaging as it is evidence-based.
Women deserve better.