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.
Firefox recommends the PDF Plugin for Mac OS X for viewing PDF documents in your browser.
We can also show you Legal Updates using the Google Viewer; however, you will need to be logged into Google Docs to view them.
Please choose one of the above to proceed!
LOADING PDF: If there are any problems, click here to download the file.
Administrative Law Updates, Health Law Updates, Privacy Updates
DISCLAIMER: Because of the generality of this update, the information provided herein may not be applicable in all situations and should not be acted upon without specific legal advice based on particular situations.
© The Harlow Group LLC | Attorney Advertising