Man with defibrillator demands access to his own heart’s information 2012-08-20


“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. And some of it later 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... Federal law entitles patients to easy access to their health records, including X-rays and pathology reports. But implanted defibrillator data is different. The information stays with manufacturers, who use it to monitor and improve their products. And it comes in a format that is not easily understood. Patients can get only interpreted data, not the raw data... Calls and emails deluged him after an online video of last November's TEDxCambridge speech went viral. He has also testified before the U.S. Food and Drug Administration and been featured on National Public Radio. He's started a blog, founded an online ‘Implantable Cardioverter Defibrillators (ICD) User Group’ and embraced a new world of patient advocacy through social media...”



08/16/2012, 06:08

From feeds:

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Date tagged:

08/20/2012, 15:15

Date published:

02/05/2012, 13:49