big data medicine

When our heartbeat is not ours

The cardiac defibrillator inside Hugo Campos transmits data to the manufacturer, which alerts his doctors if there is a problem with his heartbeat. He would like to see this data, too. But he cannot. Campos, a member of a growing number of data-access activists, or "e-patients," is challenging the defibrillator's manufacturer with this question: Who has the right to own, control, and use the information the device collects? Medical professionals are understandably concerned about patients' incorrectly interpreting data, or trying to adjust a device without understanding the way it works. Campos is concerned that people he may not know -- scientists, doctors -- have more information about him than he does. He's petitioned for access to his information; so far he has had no luck. If he and other data-access activists succeed, patients would receive access to their health data. For now, the ownership of information collected by the sensors in our bodies remains with the manufacturer.

- Last updated September 10 2012 06:07 PM ET
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