Thursday, August 26, 2010

Dr. Saxon: Patients deserve their data.

Here’s a point of view you don’t usually hear from cardiologists.

In this TEDxUSC talk, Dr. Leslie Saxon, Chief of Cardiovascular Medicine and Professor of Clinical Medicine at the University of Southern California, advocates for a patient’s right to access the data stored in their implantable cardioverter defibrillators (ICDs).


The modern ICD—which, according to Dr. Saxon, can cost upwards of $35,000—is a sophisticated electronic device that is implanted under the skin of patients that are at risk of sudden death due to ventricular fibrillation. It can achieve a survival rate of 99%. Without a defibrillator (implanted or external), a victim’s chance of survival is reduced to 2%.

Among many other features, the ICD can record and store intracardiac electrograms and allow for the data to be remotely accessed by the physician. However, such data remains largely out of reach of patients.

Almost every time I bring this up with a doctor or EP nurse, I get the question: “But what would you do with this data if you had access to it?”

Plenty. It’s about having all the tools at my disposal to have as much control over my chronic condition as possible. Knowledge is power and a patient privy to this knowledge is an empowered patient. It’s only when we can access our data, share it and compare it with data from fellow ICD patients that we’ll be able to know how it can benefit us individually. And it will.

Dr. Saxon predicts a future with a health care ecosystem that plays into other ecosystems already existing in the popular culture. Only then we can really liberate health care, destigmatize it and improve patient outcomes.

As Dr. Saxon puts it, it’s about creating “the consumer of the future, the sophisticated health care consumer who’s going to partner with their doctor in their health care.”

“Patients deserve their data,” says Dr. Saxon. “Patients want their data on demand. They’re demanding it, and patients should have it.”



Image from here.

1 comment:

Anonymous said...

I agree, I just has an ICD implanted Aug 3 and the devie has a patient management system to transmit data to the Doctor. I also received a userid and password from the manufacturer to access the website. I was under the impression I was going to see my data, all I got was battery life is ok. Duh, August 3rd and my battery is good, that is useless.