Overlooked: The Gender Data Gap

Hey! So Jen had a piece published in the JHN&G special section today. You can check it out here. Or read it below.

We're looking forward to good conversation with all of you about the gender data gap and how we can make women more visible!

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Much of the information that we collect on healthcare, safety, transportation, housing—the list goes on — does not get separated out according to sex. That means we don’t know whether or how things affect men and women differently. Researchers call this process of separating information by categories “disaggregation.” When we don’t disaggregate data by sex, we don’t get a clear picture of what is happening to men and women. 

Not only are results about women and men lumped in together, but there is also often an assumption that women are just suboptimal men — smaller, slower, more hormonal — and so we are left out of the research entirely. 

This leads to a gender data gap, which has big implications for the health and safety of women — the economics of our communities.

Overlooked, disregarded

Until 1993, women were expressly excluded from clinical research trials. Since 1993 when the National Institutes of Health changed their position, women have been allowed to be included in clinical trials, but the frontline research (on rats, for example) is generally conducted on males. 

“Women are still underrepresented in many research areas. When women are included, it’s still not routine for researchers to always actually analyze their results by sex or gender and include that information in the published study,” said Maya Dusenbery author of “Doing Harm.”

“And that’s before we even get to the fact that many conditions that primarily affect women have been comparatively under-researched entirely.”

This has led to a lack of information about how drugs, treatments and diseases impact women. As a result, women have more adverse drug reactions; approximately 50% more, often because the drugs just weren’t tested on us. We have fewer treatment choices. Our symptoms may be considered “atypical” simply because they don’t match those of men. It is no coincidence that heart attacks are a leading cause of death in women. Heart attacks in women are frequently overlooked or disregarded because our symptoms frequently present differently.  

Safety testing is another area where there is an assumption that a man’s body can be substituted for a woman’s. 

“It wasn’t until 2011 that the U.S. started using a female crash-test dummy,” wrote Caroline Criado Perez in her book, “Invisible Women: Data bias in a world designed for men.” 

She goes on to point out that women are 47% more likely to be seriously injured and 17% more likely to die in car crashes — because car safety isn’t designed for women. 

“Even though car crashes are the number-one cause of fetal death and related trauma,” she wrote, “we haven’t even yet developed a seat belt that works for pregnant women.”

Women’s invisibility in the data makes it easier for both men and women to overlook not only the health and safety of women in our communities, but also the contributions that women continue to make. 

“The failure to measure unpaid household services is perhaps the greatest gender data gap of all,” wrote researcher Caroline Criado Perez “Estimates suggest that unpaid care work could account for up to 50% of GDP in high-income countries.”

“The U.N. estimates that the total value of unpaid childcare services in the U.S. was $3.2 trillion in 2012 or approximately 20% of GDP,” Criado Perez noted.

Policy implications

We can’t change what we don’t measure. Collecting and disaggregating data with an eye toward creating policy that supports 100% of our community’s population will lead to long-term benefits for all of us. 

We’re fortunate in Teton County to have a wealth of data about our lives. We have a robust Community Health Needs Assessment that shares where we are healthy and where we can stand to do better. We have usage data on the hospital and enrollment data for the Affordable Care Act. We have information on housing and transportation. We have unemployment numbers that tell us whether our local economy is humming along. 

But how much of that data is analyzed according to sex? 

We don't know if more women or men seek housing or mental health care. When START has peak ridership, we don't know if it's men or women on the bus. Are men more apt than women to commute by bike? We don't know.

How might our decision-making be affected by this information?

Securing a seat at the table

Making women visible through the numbers is just one piece of closing the gender data gap. The solution also requires greater representation by women in all spheres of life. More women in elected office yields balanced results and increases women’s visibility in the policy that legislators discuss and enact. 

Nevada elected its first female-majority legislature and it changed the scope of the bills they considered and passed. Those bills included tougher penalties for domestic violence, permanent funding for rape kit testing, a sexual assault survivor’s bill of rights — and along-overlooked gender wage gap bill. 

In 2015, Sen. Patricia Ann Spearman (D), said legislative leaders refused to schedule a hearing on her bill to promote pay equity for women. 

“The boys club was like, ‘Why do we need that?’” she told the Washington Post.

In the most recent session, female legislators had first-hand experience with the issue and understood its economic and social importance. They got the bill passed.

Women’s visibility (or, more often, invisibility) impacts everyone. 

“When we exclude half of humanity from the production of knowledge we lose out on potentially transformative insights,” Perez said. 

It is incumbent on all of us to lift more women up because, as Perez goes on to remind us, “As women move into positions of power or influence…women simply don’t forget that women exist.”