I can’t access the data generated by my implanted defibrillator. That’s absurd.
As Mr. Campos states,
"In addition to delivering electricity to the heart, the ICD also collects large amounts of data about itself and a patient’s clinical status. The data is momentarily kept in the device’s memory before being transmitted wirelessly to a bedside monitor. From there, it is sent via telephone lines to the device manufacturer for evaluation. This process, known as remote monitoring, happens automatically in the background, usually while the patient sleeps.
Medtronic, Boston Scientific, St. Jude Medical, and Biotronik, the top four manufacturers of cardiac implanted electronic devices doing business in the U.S., all have their version of remote patient monitoring. Not one of them gives patients access to the data they collect. Doctors, on the other hand, have 24/7 electronic access to reports about the patients in their practice."
And I mean large amounts of data, such as how active I am (can't fudge what I tell the doc here), how much fluid I'm retaining, and so much about my heart, it's activities and irregularities, on a graph showing the exact dates and such. Learning this three to four months after the fact doesn't really give me any opportunity to react to it, or track what or why it is happening. Instead, I sit there in the cardiologists office and go, "Hmmm, what date was that again? Let me pull up my calendar and see what I was doing that day." If I've even logged anything down if it was a routine day with no appointments.
So let's make some noise about this. Tell your doctor about your concerns. Hopefully, in time, we will have continuous access to this information through an online website, or phone App, much like a patient with diabetes who has immediate access to their glucose levels so they can react accordingly with life saving measures.
Thank you Hugo Campos for this well written and informative article.
On Thursday, March 26, Future Tense—a partnership of Slate, New America, and Arizona State University—will hold an event on medical device security and privacy at the New America office in Washington, D.C. For more information and to RSVP, visit the New America website.
AND now the Cardiomyopathy warrior!!!