Tuesday, September 7, 2010

Access to the data in my ICD would save me money. I want it now.

Believe it or not, up until the 1960s, the VW Beetle had no fuel gauge. If you were fortunate enough to own one of those popular German automobiles, you knew that making regular stops at gas stations made a lot of sense if you wanted to lessen your chances of getting stranded on the side of the road.

The dashboard of a 1965 VW Beetle with no fuel gauge. Photo from here.

Today, a person living with a modern implantable cardioverter defibrillator (ICD) has as much up-to-date information about his device as the driver of a ’65 Beetle had about his vehicle’s fuel level 50 years ago. Patients must rely on regular (and costly) stops to an electrophysiologist’s office to ensure they won’t suddenly find themselves by the side of the road.

It begs the question:

Why should physicians be the only ones with the keys to such useful and vital information?

They shouldn’t—particularly as health care becomes more participatory and more and more patients demand to be in the driver’s seat when it comes to their health.

During the most recent visit to my EP’s office, the doctor checked my device, told me all was well, and sent me home with a $445 bill. (My insurance later adjusted it by $140, dropping it to the amount I now owe the clinic: $305.)

Ever since getting the ICD almost three years ago, I’ve been making regular visits to the EP’s office every four to six months. It adds up.

Like the driver of a ’65 Beetle who frets about running out of gas, I long for the day when my ICD will warn me by SMS, instant message or email of an impending peril.

Paying hundreds of dollars for unnecessary visits to my doctor is like paying for visits to the mechanic whether you need him or not. You would be just as unhappy if all he did was reassure you that the car was fine and sent you home with a bill for $400.

Today, most ICDs can be monitored remotely by the manufacturer and the doctor’s clinic. But the data collected by the device is not available to the single most important stakeholder in this equation: the patient.

All I’m asking for is to take on some of the responsibility for monitoring my own device. More access means improved health outcomes and better quality of life. But it also means keeping more money in my pocket.

Me, age 5, next to my parents' late sixties VW Beetle. Photo taken in 1971.


Basil Rene said...

Why don't you get your ICD's data? It is readily available to you. I get my ICD interrogated by Mt. Sinai every three months remotely and once every six months in the hospital. When remotely, I get a call from Mt. Sinai going over the data, then they send a copy of the report, 25 pages, to my cardiologist and to me. If you are not getting your data, change clinics. It would be nice to have it done by cell phone, but until such time, that's what we have. By the way, Mt. Sinai charges $200.00 and I pay a copay of $10. Sounds like you need to look into changing clinics.

Hugo Campos said...

Not good enough.

I do get copies of my interrogation reports and go through the trouble of scanning them in order to upload them to the PHR of my choice (Google Health, in my case). It is a tedious and wasteful process.

My point is about real-time, online access to these data points. It's about accessing it, understanding it, and acting on it.

Home Health Care Services Houston said...

Thanks for the practical advice. One problem with the devices and monitoring is that many people who have them are elderly and do not understand. If their doctor recommends they get help from a caregiver, it might help them to realize how important it is.