Smarr, who directs the California Institute for Telecommunications and Information Technology in La Jolla, dropped from 205 to 184 pounds and is now a fit 63-year-old. But his transformation transcends his regular exercise program and carefully managed diet: he has become a poster man for the medical strategy of the future. Over the past decade, he has gathered as much data as he can about his body and then used that information to improve his health. And he has accomplished something that few people at the forefront of the "quantified self" movement have had the opportunity to do: he helped diagnose the emergence of a chronic disease in his body.
Like many "self-quanters," Smarr wears a Fitbit to count his every step, a Zeo to track his sleep patterns, and a Polar WearLink that lets him regulate his maximum heart rate during exercise. He paid 23andMe to analyze his DNA for disease susceptibility. He regularly uses a service provided by Your Future Health to have blood and stool samples analyzed for biochemicals that most interest him. But a critical skill separates Smarr from the growing pack of digitized patients who show up at the doctor's office with megabytes of their own biofluctuations: he has an extraordinary ability to fish signal from noise in complex data sets.
On top of his pioneering computer science work—he advocated for the adoption of ARPAnet, an early version of the Internet, and students at his University of Illinois center developed Mosaic, the first widely used browser—Smarr spent 25 years as an astrophysicist focused on relativity theory. That gave him the expertise to chart several of his biomarkers over time and then overlay the longitudinal graphs to monitor everything from the immune status of his gut and blood to the function of his heart and the thickness of his arteries. His meticulously collected and organized data helped doctors discover that he has Crohn's, an inflammatory bowel disease.
I have ulcerative colitis, a cousin of Crohn's, and I am intrigued by what Smarr calls his "detective story." His investigation of his body has evolved into a novel collaboration with a leading gastroenterologist to better understand and treat his disease, and maybe even to help others like me. But I am also a disease-weary skeptic. After 22 years of seeing specialists, enduring a battery of tests, unscrambling the complex medical literature, and trying a hodgepodge of interventions, I have had no luck staving off flares and only modest success controlling them with blunt-force drugs. Like others who have chronic illnesses, I am acutely sensitive to false hope. I have been repeatedly baffled by the course my disease takes and thoroughly confused by tests meant to clarify my condition.
by Jon Cohen, MIT Technology Review | Read more:
Photo:: Michael Kelley
