The importance of women’s health data | Sheena Franklin | TEDxFoggyBottom
URL: https://www.youtube.com/watch?v=PuOJut0eG1Q Video ID: PuOJut0eG1Q ============================================================ [Music] [Applause] I want to tell you a story about my aunt who one day while enjoying a rare moment of downtime began to experience a tightness in her chest and a shortness of breath. She did what anyone would do and headed to the emergency room. But instead of being met with urgent care, she was met with skepticism. With a raised eyebrow and a condescending tone, the physician asked, "Are you sure you're feeling these symptoms?" She received little to no test, no real help, no answers. She headed to the car alone, feeling confused, ignored, and most of all scared. She began to sob, she pulled herself together and drove home and told no one for the fear of being criticized and judged. Can you relate? Most men won't. The majority of women will. After years of these types of experiences, my aunt decided to no longer be silenced. She was going to fight for answers. She was going to hold the system accountable. And she eventually won a financial settlement for the pain and dismissal she endured. only because she advocated for herself using her health data. Millions of women have these experiences not simply because of a physician's bedside manner. It's deeper than that. The data that should guide their care delivery doesn't exist in the way it should. There's a critical lack of women's health data from clinical trials, medical records, and research studies to shape how we understand, treat, and care for the female body. All stemming from a health care system that has never fully accounted for women. Today, less than 10% of funding goes towards women's health research and development. Despite the FDA's landmark decision in 1993 that all women be included in clinical trials. This is research beyond reproductive health on all the conditions and diseases that affect women solely differently and disproportionately. Diseases that could be better diagnosed and cared for if the right data existed. I know these scenarios all too well. I'm Sheena Franklin and for much of my career, I worked on the front lines of healthcare policy and corporate innovation as a government relations professional and advocate with various leading organizations and working with members of Congress. And one thing became painfully clear and that is change moves far too slowly. Policies and regulation often lag behind the realities of what's needed, especially in women's health. But it wasn't just a professional frustration that led me to this mission. It was personal. Like so many women, I too have felt the weight of a system that leaves us searching for answers in places where none exist. I realized that one of the most effective ways to see change in women's health isn't just through policies and corporate innovation. It's by empowering women through shared data. And why should women share their health data? First, it helps them personally. Imagine walking into your doctor's office not just with a list of symptoms to report, but with data from your body that tells your story. And when combined with health data from women experiencing the same symptoms as you, your doctor now has a deeper understanding of what's happening in your body in real time. Secondly, consider this that 50 to 75% of women are more likely to experience an adverse drug reaction as medications are still largely designed around a male physiology. In fact, just 4% of pharmaceutical pipelines focus on female only conditions despite women making up over 50% of the population. Your health data has the power to change the system. We could see fewer adverse drug reactions with treatments finally designed around a woman's unique biology. Because your health data has powerful insights. This is the promise of participating in research. Yes. But also using tele medicine platforms at home monitoring tools, digital health apps and even wearables. They provide you, not just your doctor or a researcher, with information to make more informed decisions about your health. leaving you with an earlier diagnosis and fewer unnecessary costs. Privacy. I will admit we do live in a world where protecting our data is a natural reflex. But these same boundaries often work against us when it comes to healthcare. No one benefits when we prioritize keeping health data locks away over discovering lifesaving insights. In fact, the irony is that the same thing that we're trying to protect, our health may suffer because of it. To be clear, privacy matters and no one should feel like they themselves or their data is being exploited. But there's a balance to strike. By deidentifying your health data and combining it with deidentified data from women like you, your privacy is ensured by researchers. This isn't a eitheror. It's about a thoughtful ethical use to create a powerful resource to tackle the biggest challenges in women's health. And one powerful example of how data sharing is driving health innovation is the national institutes of health all of us study. This initiative has already gathered data from almost a million participants each voluntarily sharing their information to build one of the largest health databases in history. And this data is already advancing drug discovery by identifying genetic markers in rare diseases resulting in faster and more targeted drug development. is even uncovering new ways to prevent diseases before they even start. Now, what if women opted into a study like this that was designed specifically for women's health? What could we achieve? Yes, we finally could see treatments designed around a woman's unique biology. And then we could apply AI to predict sex specific drug responses, closing gaps in conditions such as diabetes, autoimmune diseases, and reproductive health. We could identify patterns in conditions like indometriosis, fibroids, and cardiovascular disease, resulting in faster diagnosing and better long-term care. We can also ensure that clinical trials and AI include a diverse representation of women addressing disparities in care. These changes could have a ripple effect across the entire health care system. The NIH study shows us what's possible by working together collectively. And for this collective effort, I founded a woman's health data and analytics company to close the longstanding gaps in women's health and also to drive innovation and product development and drug discovery with an advocacy arm that connects women to impactful studies while leading the women's health working group of one of the largest and most powerful consumer technology associations to create the industry's first set of standards. for technologies built specifically for women's health needs and technologies built for the broader population where women are significant users. And I'm not alone. Other entrepreneurs are creating groundbreaking and innovative technologies designed for the entire life cycle and experiences of women. And while their approaches may vary, their commitment to leveraging collective data ensures that the solutions they create work smarter and faster to deliver a higher quality care experience to all women. What we're witnessing is a new movement in women's health, one powered by the relentless determination of female entrepreneurs and advocates who refuse to accept the status quo. So my ask of you is this. Are you ready to join the female founders, technologists, and researchers already working on the front lines by sharing your health data? Here are three simple ways you can help. Similar to looking for a physician, look for and use a tele medicine platform or even a wearable that has been designed with women in mind. Join a community patient registry that connects women to impactful health and wellness studies when asked by an advocacy organization. And lastly, be willing to join a clinical trial when your physician asks if you'll be interested in joining a study. No matter your current health status or life circumstances, you can help advance women's health in ways we have never seen before. Here's a stark reality. Your health data is already being used and shared. is being pulled from electronic health records in your doctor's office, even your insurance claim forms and yes, clinical trials. And yet, there's still not enough high quality women's health data. As the data that does exist is incomplete, biased, and often misses entire diverse populations of women. I urge you to get comfortable using privacy centered technologies that have been designed with women in mind and embrace the idea of opting in to share your health data on these platforms. As hundreds of millions of women are left every year to be undiagnosed, misdiagnosed, and having a lower quality of care, regardless of their age, race, or background. Data sharing just isn't about advancing research or care delivery. It's an act of agency and it validates our lived experiences and for the first time it puts women in control over their health and their care. Let's rewrite the future of health care together. And when policy makers and the broader healthcare industry finally catch up, we will have already begun building a health care system all of us deserve. Thank you. [Music]