Thursday, January 7, 2010

My heart, my data. Can I please have it now?

Today, I can send a text message to my bank and, within seconds, get an automated reply with all my balances, account activity, and even nearby ATM locations—all this from the convenience of my mobile phone.

So why don't I have the same level of access to the data collected by my implanted device?

This inconvenient limitation became quite clear during a recent health scare that landed me in the emergency room just two days before New Year’s Eve. As it turns out, my heart had suddenly developed one of the most common types of abnormal heartbeats: atrial fibrillation.


According to the American Heart Association, atrial fibrillation, or “a-fib,” afflicts 2.2 million Americans. When left untreated, it can lead to heart failure or stroke.

During the incident and until my arrival at the ER and proper diagnosis, I had no idea what was going on in my heart. I could only tell by the fast pulse, breathlessness, and fluttering in my chest that something was quite wrong.

My implantable cardioverter defibrillator (ICD), however, knew exactly what was going on. In fact, it had been busy logging the event and recording every missed beat. (The following day, the device was interrogated and a report was printed.)


What frustrates me is that I remained in the dark for hours until graciously informed by the attending physician that I had atrial fibrillation.

As well stated by Leslie A. Saxon, M.D., Chief of Cardiovascular Medicine and professor of clinical medicine at the Keck School of Medicine of USC, "Being a naked patient in a room with a doctor shouldn't be the only way to get information." I couldn't agree more.

As someone with hypertrophic cardiomyopathy and the son of parents who lived for years with atrial fibrillation, I should start getting used to (and prepared for) the idea of chronic a-fib.

All I need are 21st century tools to help me manage my heart disease. Having to drive to a hospital and wait for hours, just to be told what my device already knew, seems unreasonable and unnecessarily costly to say the least.

I only want the same convenient access to my device's data that I have to my dollars and cents. And I want it now. After all, isn't my heart more important than my bank account?

2 comments:

C said...

You couldn't be more right. Why can't we interrogate our own ICDs? Informed patients, which we're encouraged to be, can elicit a great deal of necessary information from the process.
My ICD cost more than $83,000 ($62,000+ for the device, $20,000+ for leads and sheaths; cath lab, hospital, and all physician fees additional). I got a remote reading device; why couldn't I have opted for a self-interrogater? And/or paid additional? The cost of a wand shouldn't be prohibitive, and could be connected to a PC/MAC program (or, as that great entry suggest, linked to an i-phone). User permissions could be limited to ICD recipients. Why isn't this happening? Thank you for raising the idea. I feel a consumer activist urge coming on.

Alan Zmek said...

EXCELLENT article Hugo!!! I hope everyone who needs to, sees and listens to this.