Many connected to type 1 diabetes research or advocacy have a motivational backstory, like a family member struggling to manage the chronic condition. For endocrinologist Dara Schuster, MD, the motivation to get involved was her awe of the discipline people with type 1 diabetes utilize to stay healthy.
“People with type 1 diabetes have to choose to live a healthy lifestyle,” she says. “They have to be technologically savvy and understand the complex dance between diet, exercise, their medicines, and mental well-being. I wanted to be a part of helping them do that.”
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As a Professor of Internal Medicine and Pediatrics at the Ohio State University, Dr. Schuster moved through more than two decades of caring for—and partnering with—her patients. She tracked blood sugar, recommended medicines and devices, and, just as importantly, held hands.
She also witnessed the difficulties of delivering personalized health care. Nothing was one size fits all about type 1 diabetes, but the healthcare system often did not support the time and expense of individualized treatment. In her work, she strived to understand the gaps and barriers by using real-world evidence, or data gathered from sources outside of laboratories or clinical trials.
“It gave us an opportunity to look at what we were and were not doing well, and then use those insights to improve how we were delivering care,” she says.
Sometimes the fixes were simple, like better equipment, improved flow of patients through the system, and easier prescription renewal. Dr. Schuster conducted studies, published the findings, and helped to make system adjustments so that better care could be delivered.
When she received a call from Eli Lilly asking her to work for them on real-world evidence, she said she realized that by taking the job, she could “be impactful on a larger stage.” She joined Lilly in 2012, first as a Medical Fellow and then as Senior Director of Global Medical Affairs, traveling to places like Europe, Israel, and Hong Kong in search of data sources and better understanding of how other integrated health systems were successfully using real-world data to improve quality of care in clinical practice. As Lilly’s Senior Director of Medical Affairs, USA, she put this knowledge into practice by brokering brokered partnerships between pharmaceutical companies and integrated healthcare systems. She also helped to bring together private insurance companies and nonprofits to conduct research.
As she forged those connections, her concept of real-world evidence expanded (see Q&A). She saw the power and the increasing availability of emerging sources of data: electronic medical records, billing data, and registries of patients who all share the same disease or condition, for example. By using these underutilized sources of information, investigators can take the conclusions of controlled laboratory and clinical trials and see how they hold up for people with type 1 diabetes living their daily lives.
“Real-world data helps us see gaps that we might not have been thinking about,” she says. “And you can use that data to help design clinical trials that address the actual problems.”
It was this focus on harnessing real-world data to improve care that led her to T1D Exchange, where she was recently chosen to lead the organization as CEO. At the helm, Dr. Schuster has the chance to draw on all that she has done before in her career toward finding solutions that work to make life better for the type 1 diabetes community.
“T1D Exchange sits in the space between the people with type 1 diabetes and those who are trying to solve their problems,” she says. “I have the opportunity to use my experience and expertise to help translate the science and all evidence we are gathering into outcomes that matter for the people who struggle.”