Medidata NEXT San Diego 2023 | Patient Perspectives
This blog was authored by Phyllisa Deroze. Phyllisa is a global diabetes patient advocate, the Director of Content Strategy at dQ&A, and a member of Medidata’s Patient Insights Board.
It wasn’t the diagnosis of diabetes that led me to become a diabetes advocate; it was the various experiences of being mistreated and misdiagnosed while searching for answers to my strange symptoms that led me to patient advocacy. My flame was ignited and remains lit by a desire to prevent others from enduring what I have.
In 2011, I went from being a healthy young woman to a coma-bound hospital patient in a matter of weeks. The PCP missed diabetes altogether and prescribed Gatorade for my symptoms of hyperglycemia. The near-fatal error caused me to pass out in my bathtub. I was diagnosed with diabetes in the ER. For eight years, I treated and managed Type 2 diabetes as my physicians told me. Unfortunately, after developing diabetes ketoacidosis a second time, it turns out I never had Type 2 diabetes, and my endocrinologist's choice to deny my numerous requests for Type 1 antibody screening was also a near-fatal error.
My journey over the past 12 years as a person living with latent autoimmune diabetes in adults has forced me to understand that I didn’t fall through the cracks of a broken system; “crack” is too small to describe the “craters” in our current system. We need to fix these issues with multifaceted approaches. I saw tangible examples of solutions at Medidata NEXT San Diego through the impressive showcase of initiatives improving a variety of challenges facing people when they’re at their most vulnerable.
As a person who benefits from advances in medical technology every day, I thoroughly enjoyed seeing the progress in data sharing across platforms because this makes a big difference in the daily patient burden. I hated logging my blood sugars multiple times a day with pen and paper. Now with a continuous glucose monitor, I no longer endure the pain of pricking my fingertips constantly, and I don’t worry about misplacing my logbook before visits to my healthcare provider. I’m more confident when shaking hands, my self-esteem is boosted by having nicer-looking fingers, and I’m less stressed when managing diabetes in public because I don’t have to squeeze blood on test strips. Diabetes tech has come a long way from tasting urine for hyperglycemia and I am forever grateful.
I had the wonderful opportunity to share the stage with Alicia Staley at NEXT San Diego to discuss how medical technology improves my life and elaborate on the contributions of the Medidata Patient Insights Board (PIB). Because I think user knowledge is essential for advancement in product design, I have eagerly accepted invitations to give my opinions. But Medidata’s PIB is different from any of my previous experiences because board members are an integral part of the design work from conception through production. It feels like inclusivity at its best when patients—the people who understand clinical trials from the moment of being diagnosed with a condition, all the way through finishing the trial—are included in every aspect of processes. It’s our perspectives that help give a 360-degree view of care, treatment, and clinical trials; Medidata’s understanding of this was front and center at NEXT San Diego.
I left San Diego feeling hopeful about the direction that industry can go because Medidata is showing the world how much innovation is possible when we value the patient perspective and their experiences from the onset. Knowing there’s at least one company making epic improvements gives people who’ve been mistreated by the healthcare system—like me—hope that keeps the patient advocacy light blazing.