How the ‘gender data gap’ impacts on women’s health

From research funding to clinical trials, the ‘gender data gap’ has a knock-on effect on women’s health globally.

In our digital world, data is everything. It drives innovation, research, business, and most of us carry dozens – if not hundreds – of gigabytes of the stuff around with us in our pockets. But, despite the wealth of data out there, inequalities remain over who holds it, and who it benefits.

There is evidence of a gender data gap across a whole range of sectors. One such example, given in Caroline Criado Perez’s 2019 book Invisible Women, is the design of crash test dummies. The most commonly used dummy, we learn, is 1.77m tall and weighs 76kg, with male muscle-mass proportions and a male spinal column.

‘Female’ dummies weren’t used in the US until 2011 and, Criado Perez writes, are little more than a scaled-down version of the male dummy, which don’t take into account the differences in female physiology. They are also typically only tested in the passenger seat, providing no data for how a female driver would be affected in a crash. This could go some way towards explaining why women are 17% more likely than men to die, and 73% more likely to be injured, if involved in a car crash.

The ‘knowledge gap’ in medical research

When it comes to health, journalist Maya Dusenbery, author of Doing Harm, describes how a “knowledge gap” puts women at an automatic disadvantage.

“It starts at the most basic level of biomedical research, where investigators overwhelmingly use male cells and animals in preclinical studies.

And it continues throughout the clinical research process, where women remain underrepresented, analysis by gender is rare, and women’s differing hormonal states and cycles are usually ignored entirely,” she writes. “Meanwhile, conditions that disproportionately affect women have often not been deemed worthy of research funding and time.”

There are two key issues at play: one being a general lack of interest in areas of health that exclusively or primarily affect female bodies, and the second being a lack of gendered analysis about symptoms and conditions that affect men and women alike.

Historically, the first point may largely come down to who was conducting the research and who was making the funding decisions. With medical research – and, indeed, the medical profession – once dominated by men, it’s perhaps unsurprising that male dominated and ‘gender neutral’ conditions have been given priority.

Representation in these fields has improved, with an increasing number of women entering both research and medical practice. However, with men continuing to occupy more senior, decision-making positions, it may take some time for the balance to shift.

There’s also the secondary issue of how sex and gender related factors are considered and analysed in the study of apparently gender-neutral health issues. Women of child-bearing age were, for many years, excluded from clinical trials – partly to avoid the risk of birth defects, and partly because their hormonal fluctuations were deemed ‘too complicated’ to factor in.

As a result, (typically white) male bodies were long seen as the ‘default’, and little to no analysis was made of sex or gender differences. Instead, it was simply assumed that the results found in male research subjects were universal and could be extrapolated to female patients. But the reality is that women are not just smaller versions of men.

Unpicking the ‘gender pain gap’

Let’s take pain as an example. It’s a subjective but universal experience, which you might think of as fairly gender neutral. Yet a study into gender differences in human pain perception found that women experience pain more intensely than men do. We also know that 70 per cent of the people affected by chronic pain conditions are women – but 80 per cent of research into pain is conducted on male humans or rodents. Not only that, but there’s increasing evidence to suggest pain medication may not work the same way in women as it does in men.

This data gap in terms of research, knowledge and understanding of gender differences combines with what Dusenbery calls a ‘trust gap’ – where (often unconscious) bias results in women’s self-reported pain being taken less seriously than men’s. Indeed, research has shown that women are “significantly” more likely than men to be prescribed sedatives, rather than painkillers, when presenting with pain. This phenomenon has been dubbed ‘the gender pain gap’ – and it’s evident across many areas of health.

It’s now been more than three decades since, in 1985, a Public Health Service task force at the US National Institutes of Health (NIH) published a report, warning that “the historical lack of research focus on women’s health concerns has compromised the quality of health information available to women as well as the health care they receive.” But it wasn’t until 1993 that Congress passed a law requiring women to be included in clinical trials.

There has been some progress in this time, both at a policy and a research level, but medical science is still very much playing catch up. Research published as recently as November 2020 found that some of the most underfunded diseases, in terms of NIH research funding, are ones that primarily affect women – such as ME/CFS, migraine, headaches, anorexia and endometriosis.

This has a knock-on effect, not only on the treatment options available to female patients, but also how seriously they’re taken in the doctor’s office. Women with endometriosis, for example, wait an average of eight years in the UK for a diagnosis. In the meantime, many are told their symptoms are “just period pain”, or misdiagnosed with IBS, because of a lack of awareness and understanding about the condition.

Innovation in women’s health data

Recent years have seen a huge surge of interest in women’s health. Awareness campaigns around issues like endometriosis, period poverty, and the menopause have coincided with the emergence of ‘femtech’, with female consumers taking an increasingly proactive approach to managing their health.

Innovations in technology and AI hold exciting prospects for bridging the data gap in women’s health research. From apps to wearables, consumers are inputting more data than ever before about their health and lifestyle. The greatest potential here is for a symbiotic relationship between researchers, brands, and patients or consumers. Research is vital to inform and drive the development of these new products. But the information gathered by consumers equally has the potential to form a whole new data bank, for use in future women’s health research.

The period tracking app Clue is one great example of this in action. While a number of its competitors have come under fire for selling consumers’ menstrual cycle data to advertisers, Clue uses its “unprecedented” user-generated data set to “forward the understanding of female health in a new frontier of health research”.

There are, of course, a whole raft of issues to be addressed – from data security and privacy, to regulation and clinical validation of devices. But, used responsibly, femtech has the power to help narrow the gender data gap in women’s health, and improve outcomes for female patients worldwide.