Is it a gender health or gender data gap?
Well, it’s both. Here’s why.
Author: Erin Walker
You may have heard the term “gender health gap,” or maybe you’ve heard the more analytical “gender data gap.” Are both these terms referring to the same concept?
Gender health gap = gender data gap
The gender health gap
The word “health” in this term refers to the fact that there are different health outcomes between genders despite similar issues. For example, there are differences in diagnoses, treatments, and even the communication by men or women* to their healthcare providers. Unfortunately, this health gap has not provided opportunities and motivation for closing it because women’s health as a whole is undervalued and under-researched.
*the term “women” is being used throughout this article in a general manner, referring to those assigned female at birth (AFAB) while recognizing that not all women are AFAB and not all those AFAB identify as women
The gender data gap
The word “data” in this term refers to the severe lack of understanding of women’s health and their bodies compared to men’s bodies due to a lack of research and, consequently, data. Since data allows us to know what is happening inside the body, more data means a better understanding of health. A better understanding of health also leads to more opportunities to expand that knowledge and collect data. You can see how this gap is cyclical, with one always leading to the other, therefore giving way for both terms to be used interchangeably.
So now that we have cleared up what these terms mean, let’s dive into some more pressing matters… what do these health and data gaps actually mean for women? Let’s check out some examples below.
Pressing examples
Menopause
Menopause is classified as the end of one’s reproductive years, which happens 12 months after the last menstrual period. It is preceded by perimenopause, which often lasts between 7 - 14 years and consists of a plethora of symptoms, including hot flashes and menstrual irregularity. Due to this large variety of symptoms and - again - a lack of research, (peri-)menopause is often misdiagnosed, the symptoms misinterpreted, and the timeline misunderstood. Combined with the fact that menopause is not mandatory learning in many medical schools, healthcare professionals often do not understand menopause well enough to know that its treatments do not have a “one size fits all” approach; the treatments also have not been thoroughly studied. Further, the (peri-)menopause experience often leaves socioeconomic impacts, such as a lower quality of life and negative impacts on work, both of which are often ignored or perceived as a “normal” life experience for women.
Endometriosis
Endometriosis is often called “the silent disease” and is one of the most common gynaecological conditions, affecting 1 in 10 women worldwide. It occurs when endometrial tissue - tissue from the lining of the uterus - grows outside of the uterus, often around the abdomen or reproductive organs. This can lead to painful scarring, cysts, and inflammation, all of which is often perceived as “normal” menstrual pain that women “have a high threshold for.” Many women report poor personal experiences in healthcare when trying to discuss this pain: they are often not listened to or taken seriously. A lack of funding for women’s health leads to a lack of research on endometriosis, which means physicians also lack understanding of this condition. Because of this and more, diagnosis takes between 7 - 9 years on average and requires surgery to confirm. These delays translate to a longer time living with pain and negative impacts on personal life, such as earning less money due to managing their symptoms.
Polycystic Ovary Syndrome (PCOS)
PCOS is a hormonal and metabolic disorder in which the ovaries produce more male sex hormones (androgens) than normal, resulting in symptoms such as irregular periods, weight gain, insulin resistance, and infertility. Despite the fact that 5-10% of women of childbearing age have this condition, its cause is still unknown. Treatments for PCOS can therefore only treat the symptoms, not the original cause itself. All of the symptoms associated with PCOS have a variety of other causes and there are many versions of diagnostic criteria, making this disorder easy to misdiagnose. People with PCOS often experience their symptoms for years and visit multiple doctors before a diagnosis can be made. Similar to the conditions mentioned above, there are challenges in researching PCOS, particularly relating to funding, participant recruitment for studies, and its classification as both a reproductive and metabolic disorder.
What do all of these conditions have in common?
They are common among women and those assigned female at birth
Their specific causes are unknown
Those experiencing them often have their symptoms for a long time before a diagnosis is made
They are difficult to diagnose
They are not well-researched and therefore not understood well, even by doctors, scientists, and women themselves
Treatments are not “one size fits all” and often only address symptoms, not the disease itself
Women are not believed or are misjudged with their lived experiences
And this is what we mean by the gender health and data gap.
References and further reading:
Closing the data gaps in women’s health (McKinsey)
Endometriosis Is Undervalued: A Call to Action (NIH)
Diagnostic delay for superficial and deep endometriosis in the United Kingdom (NIH)
Review highlights menopause research gaps and calls for a new definition (Monash University)
Why Polycystic Ovarian Syndrome Is Often Misdiagnosed (Princeton)