A TIMELY INTERVENTION: HOW DATA SOLUTIONS AT SCALE CAN CLOSE THE WOMEN’S HEALTH GAP, PROVIDE TRANSFORMATIONAL CHANGE, AND PROTECT PROGRESS

Women are the KEY

To be a woman, and in particular, a Black woman in America, is a neverending exercise in offering grace where it hasn’t been earned, patience when urgency doesn’t exist, and civility toward those who are most oppressive. In fact, in my experience, when there is a gap in equity or a great disparity in access to wealth, power, upward mobility, and especially the basic necessities of health care, the expectation of this decorum only increases. 

I can’t remember a time when in response to the frustrations of vulnerable communities simply trying to exist with a quality of life commensurate with their fellow man, that I didn’t hear someone rationalize the glacial wheels of progress with statements akin to, “Sure, it may take awhile, but it’s better than it’s ever been,” or “Our country is not that old. Look how far we’ve come.”

But in 2024, amid a concerning trend of normalizing misogyny, domestic violence, rape, and any other gender-based challenges that predominantly impact women and women of color, we must dig deep, do some reflection, and ask ourselves the enlightened question posed in the early 1980s by the late, great James Baldwin: “How much time do you want for your progress?”

In the wake of a number of Supreme Court rulings that appear to be hellbent on turning the clock backward, the announcement that the Republican nominee for Vice President is someone who “lobbied just last year to let police track people who cross state lines for abortions,” the push for the MOMS Act, a piece of legislation cloaked as the protection of reproductive health care that actually contributes to reproductive health care deserts (see my recent piece), and the publication of Project 2025’s Mandate for Leadership and its goal of ensuring the next conservative administration “rename the USAID Office of Gender Equality and Women’s Empowerment (GEWE) as the USAID Office of Women, Children,and Families” — just to name a few — we need to remind ourselves that empirical evidence will always be our first and best chance at resisting and ensuring equality is defended both on our timeline and in perpetuity.

Recently I read Closing The Women’s Health Gap: A $1 Trillion Opportunity to Improves Lives and Economies, an eye-opening January 2024 report from the McKinsey Health Institute. 

The 42-page detailed overview of the economic impacts of underinvestments in women’s health, missed opportunities in boosting longevity and productivity for future generations, and the challenges around the disproportionate health burdens facing women left me feeling disillusioned, but not deterred.

That’s because one aspect of the report stood out to me as a persistent, systemic issue that with the appropriate intervention and innovation from the public and private sectors, can be overcome. 

Data scarcity.

The report mentions “Attaining Gender and Ethnic Diversity in Health Intervention Research: Cultural Responsiveness vs. Resource Provision,” a 2000 article by J.H. Flaskerud and A.M Nyamathi, who cite, “Data can quantify problems and measure the impact of potential solutions. It is the critical ingredient of robust, evidence-based analysis and decision making. Yet many of the epidemiological and clinical data sets widely used today fail to provide a complete picture of women’s health because they undercount and undervalue the health burden. When women’s health is invisible, there are missed opportunities to improve lives, especially for women and girls in vulnerable populations.”

I wholeheartedly agree with this finding.  

And nearly a quarter century after this citation, and with more information at our fingertips than ever before, why haven’t we moved beyond passive endorsements of equality and into an era of empowering it with the technology and resources already in our purview??? 

It’s wholly unconscionable that a lack of data still remains one of the largest contributors to the women’s health gap — and when you consider that insufficient data is now a primary culprit in untapped economic gains both within our reach and beyond our collective willingness to change, the stagnancy stings even more. 

McKinsey has found that “investments addressing the women’s health gap could add years to life and life to years — and potentially boost the global economy by $1 trillion annually by 2040.” 

What exactly are we waiting for?!

I use the proverbial we because some of us are not waiting — and this is never more true when it comes to data. With women 75% more likely to adopt digital health solutions than men, particularly when it comes to what a Fast Company article last month referred to as ‘Spite Tracking,’ women are gaining greater agency over their health outcomes. And the tipping point for this shift? You guessed it — women who have decided that they’re done waiting. 

According to Theresa Neil, the author of the piece and the person who coined the term ‘Spite Tracking,’ “Women are tired of being ignored and overlooked by their doctors. Years of dismissive doctors are fueling an organic surge in symptom tracking as women take control of their health narrative. Once ignored by the medical system, women use self-tracking and data from their wearables to document their experiences and advocate for themselves. Women are showing up at appointments armed with data, ready to prove to doctors that their symptoms are real and should not be dismissed. Health tracking is rising, and the women’s health app market is expected to grow 20% annually through 2030.”

They’ve essentially said to themselves what every woman has, at one time or another thought or muttered under our breath: “I’ll do it myself.” 

I know I’ve found myself in this position more than I care to admit — and particularly in health care settings. When I go into a physician’s office, and distinctly a physician with whom I’m having my first few appointments with, the patterns mentioned by women, and chiefly women of color, always emerge. My concerns aren’t taken as seriously as I’d like them to be. 

In the Spring of 1976, I was enduring excruciatingly heavy periods and was told to “deal with it,” and that it was all a part of “the normal transition to womanhood.” My indications that I knew I was losing too much blood and that something wasn’t right were not enough. And even in the last decade or so, when I developed warm red patches on my skin that may have been related to hormone changes, patches that had grown in size and were increasingly alarming, the doctors dismissed my symptoms. And ultimately, it was their unwillingness to even attempt to gather more data beyond a basic biopsy and labs that led to a misdiagnosis of Lupus.

I do not share these anecdotes lightly. As the former President of the Grady Health Foundation and someone who grew up in a family of physicians, I have undeniable respect for the clinical process, for the selflessness that comes with the field of medicine, and for the unparalleled ability to aggregate moving parts and piece together a patient’s story. It’s hard work. And that’s precisely why it is so dehumanizing when it is executed without the full range of resources that should be available and could illuminate transformative changes in care.

The truth is that no matter how much individual responsibility we take, and no matter how proactive digital advancements we use of our own volition, we deserve more than a world that has come to rely on the fact that, all too often, women are willing to step in and close the gap as needed. 

What’s the vision???

🔑We deserve a world that doesn’t exploit our resilience — a world where tracking a period on an app doesn’t make women susceptible to arrest. 

🔑We deserve a government that provides the infrastructure for protecting, not destroying bodily autonomy. 

🔑And we deserve an enlightened shift, a systemic overhaul of how data is collected, disseminated, protected, and deployed  — one that acknowledges the shortcomings and makes the necessary investments in ensuring not only our survival but our right to universal standards of health and well-being.

Put simply, anecdotal data — while individually valuable — will need to be amplified by a global willingness to gather women-centric insights, close the gap, and embrace a more equitable way of life.

Some of the McKinsey report’s top line prescriptive measures offer a good place for us to begin:

🤝🏽Make More Public and Private Investments: Funding for research often overlooks women’s health. The NIH only allocates 11% of its budget to womens-health-specific research. This must change because, as the report states, “In the United States, up to 45 percent of basic and applied life-sciences research is funded through federal and nonfederal government sources. The importance of public funding is even higher if we consider that for life sciences companies to reach later-stage development, they rely on results from basic and applied research.” 

Women-centric research investments are an indispensable part of the path forward. Additionally, the report commends the progress of private equity and venture capital investments in women’s health, specifically with female technology (FemTech) start-ups. But as the report also mentions, digital health “has the potential to make health more equitable.” Assuming this is true, FemTech companies need to receive more than 3 percent of the total digital-health funding out there.

📙Systemically Collect and Analyze Sex-Ethnicity and Gender-Specific Data: Having detailed reporting on specific conditions will impact the funding to research and treatment. Furthermore, the report mentions that the Women’s Health Innovation Opportunity Map 2023 has proposed establishing sex as a biological variable because it “would enable national health departments and international health organizations to develop and enforce guidelines regarding disaggregation of data by sex and gender in research studies and health surveys.” 

Also, fortunately some FemTech outlets are developing advancements to address the protection of patient privacy for this data — and as the report correctly notes, “Developing robust, secure, and holistic data sets could enable companies to differentiate in an overcrowded marketplace.” We need to ensure the momentum continues.

💸Make the Economic Case: If we know that chronic diseases, caregiving obligations, and disabilities disproportionately affect absenteeism and productivity in women, then connecting the dots on that front will dramatically change outcomes. In fact, according to the report, “Addressing the gap could generate the equivalent impact of 137 million women accessing full-time positions by 2040. This would enable women to secure an income to support themselves and their families and has the potential to lift more women out of poverty.” Additionally, the data shows that “closing the women’s health gap could allow women to add 1.7 percent to GDP” and that “investing in women’s health shows positive return on investment (ROI): for every $1 invested, approximately $3 is projected in economic growth.”

McKinsey recommends establishing workplace policies that support the health and longevity of women — and that a critical factor in achieving this will be ensuring women, because they have likely had some of these challenges themselves, are in decision making roles in this regard.

Perhaps the most upsetting statistic in the whole report is the one that reveals women will spend an average of nine years in poor health. Nine years — and apparently 25% more time than men. 

This number haunts me and it takes me full circle to when Mr. Baldwin asked, “How much time do you want for your progress?” When he said that, he also added, “I’m not going to live another 60 years.” He told us how people would say to him that “It just takes time,” and he went point by point, telling us the time that had been taken from his loved ones while they waited for their inalienable rights to come to fruition. 

Baldwin was imploring us to remember something even more profound. 

Across history, while the prospect of affording others their humanity has often been dangled like a mirage on the horizon line, the time taken as the wheels of progress slowly churn along is anything but passive. In fact, it’s painful, not passive. It takes from people — it takes dignity, and of course access to health, prosperity, and other necessities that are so easily available to some. 

Which is to say more clearly and succinctly, this singular truth. That more than anything else, time is life. A gap unclosed is a life — many lives — unlived to their fullest potential. 

And why would we EVER settle…especially for that?!