Filling the Biggest Gap in HealthCare with Women’s Health Insights

50.5% of the US population are women, yet for decades women were excluded from clinical research. We need to change that.

The Accidental HealthCare Career

When I started my career, I didn’t know it would be in healthcare or that it would be focused on the women’s health. I also didn’t know that it would be about the gap, not what already exists.

I ended up in healthcare by accident, or maybe because the questions “so what” or “what if” kept comping up. I started working in an occupational medical center as a teenager for a summer job. This exposed me to a version of the healthcare system I didn’t know existed. Its purpose was to address work-related injuries, conduct physicals for employment, and provide care and education around a variety of workplace hazards. I saw a vast and varied set of jobs and people working in those jobs that were often risky, demanding, and difficult. In some of the cases we encountered, being out of work due to a work injury put an entire family at financial risk.

Thinking my stint in a health-related job was a summer affair to pay for college, I graduated and took a job in Washington, DC to work in environmental consulting. This was during the early days when environmental policy efforts created new legislation such as the Clean Air Act and Earth Day. I worked on projects related to Superfund sites, hazardous waste and…health impacts. It was my second unintentional intersection with the health system. Learning about how environmental toxins impacted humans illustrated another aspect of health I had not been aware of: social determinants of health. Social determinants of health are the non-medical factors that impact health outcomes. This meant improving individual health was not entirely about healthy behaviors or interaction with the health system. It was dictated to a large extent by where you lived, what was upstream, or in your water, air, or soil.

I ultimately left DC and environmental consulting behind to live in a place with snow. I moved to Boston and took a temporary position working in a hospital for maternal fetal medicine obstetricians while I figured out my next step. Another seemingly disconnected job, this one landed me directly in the healthcare system. Maternal fetal medicine or MFM, addressed the most high-risk pregnancies. Every patient was being managed based on the best clinical practices, and required more frequent monitoring, medications, or treatment. All women were high risk, but not all women had the same resources. Some found it difficult to get into Boston for their appointments due to work or lack of transportation. Others struggled with coverage to pay for unexpected and often expensive medication or treatment for their health or that of their baby. Still others lacked social support on what was often a frightening journey through pregnancy.

The Foundations of Filling the Gap

These three disconnected jobs were the foundation in my 30-year journey to identify and fill gaps in healthcare. That journey began in earnest when I left the MFM department to start a position as a researcher at a clinical research organization (CRO) with the motto: ‘no research without therapeutic or policy benefit’. I didn’t know what a CRO was, but I found the atmosphere friendly, the job interesting and their motto appealing. Over the next three decades, I engaged in clinical research to identify gold standards in medicine and clinical best practices. I had the privilege of conducting research to identify disparities in healthcare. I collaborated with the communications group to share findings to the broader public.

During this time, I explored the tension between the clinical gold standard and the world where patients lived. My research focused on understanding what contributed to health disparities. Looking back over my history in occupational, environmental, and maternal health, it was clear that non-compliance with clinical best practice was more often a consequence of access, resources or other social determinants of health than choice. Yet, patients were often labeled as unwilling or difficult when they did not comply.

With the evolution of technology, we began a digital strategies research program to develop products, programs and interventions. These efforts filled the gap between clinical best practice and real-world experience. The benefit of working in a research institution was that these programs were based in evidence and tested for effectiveness – if best practice was not possible, we provided achievable alternatives.

The Loss and Restoration of Women’s Health Insights

Several years ago, I had a conversation about filling the gap in maternal healthcare with a good colleague and obstetrician. We were talking about what happens to moms after they give birth when they have a health concern. The answer was surprising: many were lost to follow up. This stuck with me and became the seed for another shift in my professional journey in healthcare. I left corporate healthcare for the start-up journey. The conversation on the maternal health gap had become even more prominent, and became the premise of Joyuus, a company I co-founded which is committed to providing comprehensive self-care solutions for postpartum moms. We are devoted to arming moms with evidence-based information for the entire year after birth, recognizing that best practices can’t always be achieved when 50% of the country is in a maternal care desert.

However, even before Joyuus, it was apparent that the next stage of my founder’s journey would be to address the much bigger gap that exists in healthcare: the gap in women’s health information, insights and data. It is almost unimaginable that in 1977, a broadly defined FDA policy excluded women of childbearing potential from clinical research. Although this policy was later modified by the NIH, inclusion of women in research was merely a trickle until 1993 when Congress wrote the NIH policy into Federal law. This meant decades of women’s data were lost simply by not being captured.

During this same period (1973) epidemiologist Barbara Starfield published her conceptual schema “health needs and problem recognition” where she codified the four “Cardinal Cs” of primary care: first Contact accessibility, Coordination, Comprehensiveness, and Continuity. Starfield understood that when health systems are based on these principles, patients are treated with more equity which leads to better outcomes. She was defining the way healthcare should be delivered. Alarmingly, as she was calling for comprehensiveness, components of the system were erasing women from the data picture. The absence of women’s data for nearly two decades meant that the foundational principals of primary care could not be achieved, because half of the population’s data were not being created, captured, or analyzed to develop best practices. It is therefore impossible to provide alternatives to best practice when the standard itself was never created.

Looking back, I would have never predicted this squiggly line of a career would have led me here. Pursuing passion over a predetermined path has shaped these possibilities. We need to continue every effort to fund research to develop best practices for diseases and conditions that affect women or affect women differently. This is one important data component. But we must also fill the gender equity gap by creating broader, diverse, and comprehensive data. These data must be more inclusive, more holistic, and more representative of the health needs that have too long been ignored or sidelined. They serve as a cornerstone, not only rectifying present disparities but also laying the groundwork for evidence-based alternatives until healthcare achieves true equality. They are also the foundation of my next chapter: filling the women’s health data gap.