How Big Data can Revolutionize Health Care

Twenty-four years ago when I was a sophomore in college, I began experiencing a series of unusual fainting spells. The spells eventually landed me in student health, where they ran lab work and uncovered some pretty serious kidney problems. After six months of tests with six doctors across two hospitals, I received my diagnosis: I had two rare diseases that would eventually destroy my kidneys. I had cancer-like cells in my immune system that needed immediate treatment. I would never be eligible for a kidney transplant, and I wasn’t likely to live more than two years.

That diagnosis changed my life forever. But after I found myself preparing to die according to their schedule, a fellow patient snapped me out of it. She dragged me to a medical library and dug up some research that showed the diagnoses didn’t fit me at all. She told me to wake up and take control of my health. And I did.

I became committed to creating a personal health system that wasn’t focused just on increasing my chances of survival but on improving my quality of life. I actively pursued access to technologies, data and cutting-edge treatments that helped maximize my time with friends and family. I strived to have my care at home as much as possible, away from hospitals and outpatient centers, which can be dangerous places for my compromised immune system.

Perhaps the most important step I took was having my genome sequenced. I’m lucky to be one of the 47,000 people on the planet to have this raw data on all 6 billion letters of my DNA. In my case, my physician said it changed everything we knew about my diseases and course of treatment — which had been wrong for two decades.