Letter from Stockholm: Disruption Ahead!

One of the most interesting events at the 18th International Congress of Parkinson’s Disease and Movement Disorders in Stockholm was a dinner hosted by the Kinetics Foundation. The topic was the development of Objective Monitoring Systems for PD — systems that will one day augment or replace the infamous MDS-owned and licensed Unified Parkinson’s Disease Rating Scale. The UPDRS has many flaws, but Swedish patient/entrepreneur Sara Riggare (who was at the dinner) captures it best. As she puts it, “I see my neurologist every six months for a 30-minute session, and thus spend about one hour in total per year being observed. That leaves, she says, 8,756 hours per year of self care.” That’s time when she and others with Parkinson’s experience symptoms, but when nobody’s paying attention.

Over the past decade, a number of companies have been quietly developing technologies capable of tracking PD patients’ symptoms outside the clinic 24/7. Those on display in Stockholm included the Cleveland-based Great Lakes Neurotechnologies, the Australian company Global Kinetics and the Cure Parkinson’s Trust supported European SENSE-PARK project. These entities are working on various combinations of advanced wearable sensors (worn on sites like the wrist, waist, and ankle), which track multiple domains — bradykinesia, tremor, walking, gait, balance, cognition and more.

But the mood at the dinner suggested that what’s at stake here is much more than replacing an imperfect clinical test. The speakers — which included neuroscientists Baastian Bloem, Fay Horak, and Nir Giladi, data wrangler Peter Schmidt (National Parkinson’s Foundation), Ken Kubota (Director of Data Science at The Michael J. Fox Foundation for Parkinson’s Research), and Shahar Shpigleman (Director, Advanced Analytics, Intel Corporation) — indicated that we might be on the verge of a healthcare revolution.

In the traditional medical model, trained researchers do research, qualified clinicians practice medicine, and patients participate in clinical trials. But given the major chronic diseases that plague the modern world — like diabetes, arthritis, and neurodegenerative conditions — and given the extraordinary technologies that are available, the time may be at hand for a more personalized and patient-driven healthcare system.

Interestingly, such disruptive notions find strong support outside of mainstream medicine. A number of powerful constituencies get very excited by the concept of wearable sensors and participant healthcare: from Silicon Valley entrepreneurs making smart devices for the health and fitness market to proponents of the “quantified self” movement (a community where individuals seek “self knowledge through self tracking”), to scientists interested in amassing and analyzing “big data”. Large companies that have recently announced major investments in personalized healthcare include Apple and Samsung.

I sense a storm coming. My advice to clinicians is to embrace the future rather than oppose it.