Hugo Campos has a small computer buried in his chest to help keep him
alive. But he has no idea what it says about his faulty heart.
All the raw data it collects, especially any erratic rhythms it controls
with shocks, goes directly to the manufacturer. Later, some of it gets
sent to his doctor.
But Campos had to step onto a national stage in his fight to see the data his body produces.
His David-and-Goliath campaign puts him on the leading edge of what's
called the e-patient movement -- "engaged, equipped and enabled" -- that
seeks to harness data so patients can learn more about their bodies.
"It's mine. I paid for it. It's in my body," says the tech-savvy
45-year-old who, since his sudden collapse at the Fruitvale, Calif.,
BART station four years ago, has devoted himself to studying cardiology
textbooks, attending device symposiums and scheming ways to access the
electronics of his tiny defibrillator.
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