Gimme My Damn Data - The ICD Edition

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The latest news story to examine the issue of patient access to implantable cardiac defibrillator data (a variation on the theme of “gimme my damn data”) is an in-depth, Page One Wall Street Journal story featuring Society for Participatory Medicine members Amanda Hubbard and Hugo Campos. They have garnered attention in the past – one example is another piece on Hugo on the NPR Shots blog about six months back. The question posed by these individuals is simple — May I have access to the data collected and/or generated by the medical device implanted in my body? — but the responses to the question have been anything but. It is important to note that not every patient in Amanda’s or Hugo’s shoes would want the data in as detailed a format as they are seeking to obtain, and we should not impose the values of a data-hungry Quantified Self devotee on every similarly-situated patient. Different strokes for different folks.

The quest of patients with implanted devices to gain rights to data should not have to be so quixotic. The information in question is subject to a different regulatory scheme than EHR data, but that is an accident of history, technology and politics. There is no fundamental distinction between a series of MRI images, or a blood test result, and a set of data downloaded from an implantable medical device.

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