With her father beside her whispering encouragement, Lorelei Hoenen, a 6-year-old with a blonde ponytail, looked out across the silent crowd at Stanford Medicine X Friday morning. “Last year, I got very sick,” she said.
Struck suddenly with acute flaccid myelitis, a rare polio-like illness with various causes, Lorelei was weak and she struggled to breathe and eat, her father, Bodo Hoenen explained. And when her acute symptoms subsided and she was released from the hospital, Lorelei’s left arm remained paralyzed.
The Hoenens took to the internet, where they found only 100 or so other kids with the disease, although many were much worse off than Lorelei, requiring ventilators and wheelchairs. Physicians recommended physical therapy for Lorelei’s arm, although her chances of recovering mobility were slim. For Bodo, that wasn’t enough.
A social entrepreneur invested in open access, Bodo Hoenen set out to create a mechanical assistive arm for his daughter. By posting videos of their story, the family enlisted the help of experts across the world and they published their efforts online to help other families facing similar challenges. The resulting arm was helpful, but by no means perfect, Bodo said.
Then, late last year, something amazing happened. Looking down at his daughter standing quietly beside him, tears welling up, Bodo relayed the good news: “She said, ‘Hey Mom, Dad, look, I can use my arm again!'”
They had won the odds lottery: Lorelei’s paralysis wasn’t permanent. But although they don’t need the robotic arm anymore, the time spent working on it wasn’t wasted, Bodo said. “It provided us tangible hope. Without this project, we would have been spectators.”
The Hoenens were accompanied onstage during the “Health Care’s Digital Future” session by other health entrepreneurs who have utilized digital tools and online communities to make changes in health care.
Frustrated with her continuous glucose monitor and insulin pump, Dana Lewis reached out to others with Type 1 diabetes to try to liberate her data and create an alarm that was loud enough to alert her. The end result was a self-crafted artificial pancreas system, which morphed into a larger movement to empower patients to help address their own medical challenges.
Lewis is now a patient-researcher, an uncommon appellation that still draws doubt and apprehension from many conventional researchers, she said. But that may increasingly change. She is now a principal investigator, in partnership with researchers from Arizona State University, of a new project that will aim to expand their work beyond the diabetes community.
“My challenge to you is to think outside the box,” Lewis said. “Think outside the labels of traditional health care. We aren’t waiting because we can’t afford to wait any longer.” Aaliya Yaqub, MD, approaches the challenges facing health care from her role as a physician. Encounters with doctors usually take place in drab, sterile settings with outdated technology (paper forms!), leaving patients feeling uncomfortable and with little power, she said.
Why can’t the sleek beauty of the Apple store, or the hospitality of Four Seasons resorts, be found in doctor’s offices, she wondered. So she helped found Forward, a private primary health care startup, with an emphasis on design that encourages patients to feel at ease and top technology such as a full-body scanner. “The entire experience is redesigned,” she said.
Yet, admittedly, good design and exemplary tools don’t make for a successful therapeutic relationship, Yaqub said. “Great technology needs to be paired with human compassion and connection and authenticity,” she said.
“In three words, what will it take to create the health care we want?” Kansal asked. Among the panelists’ answers: “optimism, inclusiveness, tenacity;” “awareness, creativity, engagement;” and “make it happen.”
Previously: A call for raised voices (with everyone included) as this year’s Medicine X begins and It’s back! Stanford Medicine X returns to campus
Photo courtesy of Stanford Medicine X