Remote ICD monitoring: where is my pony?

Have you ever seen the TV spot where two little girls are offered ponies by a shady banker? The first girl is given a toy pony while the second one gets a living animal. When the first girl protests, the banker dismissively replies, “You didn’t ask.” The voice over concludes: “Even kids know it’s wrong to hold out on somebody.”



While the ad cracks me up, it also reminds me that when it comes to remote follow-up and monitoring of ICDs and pacemakers, patients are getting toy ponies while doctors and industry are getting real ones.

Patients are asked to adopt this new technology and are pitched the conveniences of fewer office visits, lesser travel expenses, and the ability to send transmissions anytime from (almost) anywhere.

Medtronic’s web site, for example, promises patients “a new sense of freedom through remote monitoring.” It claims that “nearly 300,000 people around the world benefit from Medtronic’s home monitoring,” gaining more freedom, convenience and peace of mind. While I agree that these are definite benefits, they’re not significant enough to persuade me to adopt remote monitoring. They also do not compare to indisputable financial benefits both doctors and manufacturers enjoy from our adoption of the technology.

“By enabling routine device follow-ups remotely, doctors can quickly and thoroughly review the status of a patient’s heart condition, and schedule follow-up appointments only when necessary,” says Medtronic in this press release. The key word here is “quickly”. In a world of declining reimbursements, efficiency means profitability. Remote monitoring allows for doctors to “see” more patients without really seeing them.

Sadly, most of us are only too happy to jump on the bandwagon without giving it a second thought.

Should we want fewer office visits?

So, are fewer visits to the doctor a real benefit to us? Not necessarily. During my visits, I always ask for and bring home copies of my interrogation reports. I enjoy reviewing the report with my electrophysiologist and appreciate our interaction and access to his knowledge and expertise. I would not trade this valuable time for the convenience of remote monitoring alone. Sure, remote monitoring has its conveniences, but it also means having less access to information. And, to me, that’s a serious inconvenience.

What I see as a true benefit is 24/7 access to my heart’s data: the same data doctors and manufacturers download and access remotely from my implantable device.



The plastic toy pony.

Here’s the breakdown of what you’re giving up when you agree to the “plastic toy pony”:

• You are passing up the opportunity for valuable face time with your doctor. It’s your chance to ask questions and get educated about your condition. It’s about access. If you think you can call the clinic and get your EP on the line to answer your questions after transmitting your data, good luck and God bless your credulous heart.
• It’s much harder to get a copy of your interrogation report if you don’t go into the clinic. Ironically, with remote monitoring, your data is even less available to you. You must ask the clinic to mail you a copy of the report or use 20th century technology and have it faxed to you. If you’re already at the clinic, all it takes is to ask them to print you an extra copy.
• You must have a landline to use remote monitoring. If you’re like me and others who only use mobile phones and digital/VoIP phones, you’re out of luck. Most remote monitoring systems only work over traditional landlines. The only exception (as I write this) is Biotronik’s system. Biotronik is the pioneer in the field of remote follow-up and monitoring of pacemakers and ICDs. The data retrieved from their devices is transmitted to a center in Germany using the GSM (Global System for Mobile Communications) network. This is the main advantage of their system.

Moreover, as doctors Mark Schoenfeld and Dwight Reynolds ask in their article Sophisticated Remote Implantable Cardioverter-Defibrillator Follow-Up: A Status Report, (Pacing and Clinical Electrophysiology, April 2009), “If a patient spontaneously transmits data through the Internet that is not accessed nor responded to in a timely fashion, who is responsible, particularly if a poor outcome arises from delayed interrogation? This situation is not likely to arise during a scheduled clinic visit when the physician knows that a specific device interrogation is being made.”

As we look for ways to reduce heath care costs, remote monitoring and follow-ups for patients with pacemakers and ICDs is likely to become the standard of care. However, I believe patients must be made a part of the equation and be empowered to review all our data via the Internet. After all, it is OUR DATA. And as our own best advocates, we’re entitled to having access to it.

One thing is for sure. Until I can get a “real pony,” I'm holding off on remote monitoring.

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?