Wednesday, April 6, 2011

Dear DrWes (What they do not know)

Earlier today, DrWes wrote of his indignation over attending a cardiology conference where attendees wore badges outfitted with RFID tags. He wondered what the organizers knew about him and if he’d still get credit for the sessions he walked out early on.

Given that RFID is a technology once limited to tracking cattle, I can see how offensive it could be to use it to track cardiologists. But I digress.


Here’s my response to the post:

DrWes,
I see your frustration, but you don't have my sympathy.
I live in a world where an electronic device implanted in my chest counts my every heart beat, tracks my physical activity, looks at the build up of fluid in my chest, knows my implant date, and even the dates of visits to my EP’s office. It also tracks its own performance and the possibility of its malfunction.
Yet it shares none of this information with me, the originator of the data and its rightful owner.
But wait, it doesn't stop here. The implantable device is wirelessly connected to a proprietary, closed network created and run by the same people who built it. And in addition to my data “they” also track data collected from half a million other people like me.
Furthermore, the manufacturer has unrestricted access to all of this data and can use it however it sees fit. For example, it can look at how the leads of my ICD are performing in comparison to similar models implanted in other people and make adjustments or improvements to their product line based on this valuable information.
No one ever asked me if I’d like “opt out” of sharing this data with the corporation who sold me the gadget. And yet I am kept out of the loop and in the dark. (Sure, they’ll humor my occasional request for a print out just to shut me up. But that's far from enough in my view.)
Such is my world. I'm sure you’ll agree it is, in some ways, like roaming the conference rooms of 2011 ACC not knowing how your RFID data will be used. But one thing can be said about remote patient monitoring. It sure seems a lot more like remote patient surveillance, doesn’t it?
Hugo Campos
ICD User Group


1 comment:

DrWes said...

Hugo-

Great points and I totally understand and appreciate your perspective - it IS excellent.

Having said that, these industries are REGUIRED to track this data by the FDA under the carefully constructed HIPAA and HITECH laws. (On more than one occassion industry has supplied detailed info on patient's for me when recalls/advisories are issued to cross-check with our own data. Many patients move into our system and so this data can capture patients we might not be aware of.)

Our government is as responsible for harboring this info as much (or maybe more) than the industry folks themselves.

Just my &0.02-