Don’t Dismiss DIY Medical Devices and Independent Scholarship

Innovative solutions to stubborn medical problems can come from the most unlikely sources, including many “unexperts.” 

By Paul Cerrato, senior research analyst and communications specialist, Mayo Clinic Platform and John Halamka, M.D., President, Mayo Clinic Platform.

In our new book, Redefining the Boundaries of Medicine, we devote a chapter to rethinking medical expertise. It starts with a thoughtful quotation from the astronomer Neil deGrasse Tyson: “One of the great challenges in life is knowing enough to think you’re right, but not enough to know you’re wrong.” It emphasizes the fact that some well-respected experts in each domain reject innovations because they don’t fit into the existing paradigm, or because their proponents don’t have the credentials or affiliations they consider adequate to be recognized as experts themselves. But if healthcare is to move forward, it will have to embrace others who have traditionally been shunned in the medical community, including patients, citizen scientists, and independent scholars who are not affiliated with learned societies, major universities, or medical centers.

Such collaborations are long overdue. As National Magazine Award-winning journalist S.E. Smith points out: “The healthcare system will improve only when we rethink who counts as an expert.” The pool of experts who currently steer the healthcare ecosystem is primarily composed of healthcare executives in hospitals, clinics, and insurance companies, as well as physician leaders and other high-level policy makers, but Smith believes: “Underrepresented in these conversations are those who know the system at its worst, like ambulance crews… nurses in underfunded community health clinics, and uninsured patients…

[T]hose who are considered lowest in status often have the best observations about the systems they are trapped in… Repairing America’s healthcare system requires the humility to recognize expertise no matter where it comes from, and the ability to integrate stakeholders into the process as early as possible.”

Several “unlettered” innovators stand out. Celestine Wenardy, a high school student, developed a noninvasive continuous glucometer that did not require a blood draw and cost about $63 in 2019. Erin Smith, another high schooler, “developed an artificial intelligence-powered “selfie” technology called FacePrint to capture [a Parkinson’s patient’s] expressions and help doctors diagnose and monitor the degenerative muscular disorder. FacePrint requires only a computer and a webcam and has an 88% accuracy rate, according to published reports.”

Equally impressive is the DIY “bionic pancreas,” a software system to close the loop for Type 1 diabetics. Previously, patients used insulin pumps to administer the hormone and glucose meters to monitor blood sugar levels, but the two devices never communicated with each other, requiring patients to read the meter’s data, adjust their dietary intake, and physical activity level and then calculate the correct insulin dose. Dana Lewis and associates created an algorithm to make the much needed connection. A recent news feature in Nature explains: “After years of relying on self-reported data, in the past year, two randomized controlled trials… have shown the safety and effectiveness of open-source systems. And this January, the US Food and Drug Administration (FDA) granted regulatory clearance to an AID system based on an open-source algorithm for the first time.”

Let’s not overlook an untapped pool of potential experts, including “citizen scientists,” unemployed PhDs in the health sciences, and perhaps even your local car mechanic or fashion designer, if they possess an uncommon vision or insight. Innovation and genius can wear many faces.