When T1D Exchange decided to hire its new chief executive officer, the organization sought an individual who could bridge the worlds of healthcare, industry, and patient advocacy, offering fresh solutions to the contemporary challenges of type 1 diabetes. Endocrinologist and pharmaceutical executive Dara Schuster, MD was the ideal choice. An early pioneer in using real-world data to inform healthcare, Dr. Schuster trained in medicine but also pursued the rigor of science, developing methodologies for collecting information on patient populations to measure how well providers were adhering to standards and guidelines of care. She carried those experiences to Eli Lilly, where she worked to put medicines in the hands of patients who needed them more efficiently, more effectively, and with improved understanding on use. Here are her insights into the power of real-world evidence to offer solutions for individuals with type 1 diabetes.
There are many definitions of real-world evidence. What is it for you?
In a clinical trial, you are studying one thing and artificially limiting all the other parameters around it. Real-world evidence attempts to answer: how well does this intervention—a diet program, medicine, or device— fit into this person’s day-to-day living? It is really a practical application of innovation.
Is this a new concept?
People who were taking care of patients were always doing their own real-world research in their minds, but that is not data collected methodically. Now we have new sources of information, and people are seeing the power of it to identify the gaps in care. Where are patients struggling? What would make their lives easier and better? We can be very thoughtful about innovation.
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What are these sources of information that can make up real-world data?
Electronic medical records, billing data, and registries of patients who all have the same condition or disease. Now we can look at people’s ability to pay their mortgage, gas, and electric, and who they vote for as predictors of how healthy they are going to be.
What can we realistically gain from real-world evidence?
Insights into what matters to patients. Understanding of where the limitations are in our current healthcare system. Helping industry accelerate drug discovery and development by providing information that may help guide and make choices. Really, what can’t we gain?
How does gathering real-world evidence fit into the larger mission of T1D Exchange?
T1D Exchange is conducting studies and developing a large body of information specific to people with type 1 diabetes. We can accelerate therapies and improve care by sharing and partnering with organizations that can use this data.
How is the patient part of this process?
T1D Exchange has access to patients who trust us and share their vital, hard-fought experience and information. Even our T1D Exchange Glu online community is so helpful in the immediate, on-the-spot feedback it provides.
Why do you think T1D Exchange’s patient-centered focus is so important?
Innovation has to include the end user. It is not just about creating new medicines or devices. It is also about understanding the challenges that patients have and that the healthcare system has in delivering the care that patients need. If we can inform both of those, we can help not just the creators and inventors, but also the policy makers and resource allocators regarding care.
How can patients themselves get involved?
People with type 1 diabetes are taking on responsibility for their own outcomes. These individuals who are so dedicated to helping us at T1D Exchange want to be part of finding solutions by providing insights into where solutions are needed. Without them, we are guessing.