Data, Data, Who owns the Data?

While we've occasionally blogged on medical tech, it's usually regarding electronic records keeping issues. While this is important, it's really only part of the equation: many folks have various gizmos implanted in their bodies, from pace-makers to prosthetics, even defibrillators, which are the subject of this post.

These little wonders represent a true feat of medical engineering: technically known as implantable cardioverter defibrillators (ICDs) they're "placed in the chest or abdomen. Doctors use the device to help treat irregular heartbeats called arrhythmias ... An ICD uses electrical pulses or shocks to help control life-threatening arrhythmias."

And they do something else, as well: they collect data about one's cardio system and transmit that information back to the device's manufacturer.

And therein lies the rub:

"Hugo Campos has [an ICD] buried in his chest to help keep him alive. But he has no idea what it says about his faulty heart."

All the pertinent data is collected and then sent back to the manufacturer, which then shares some of it with Hugo's doc.

But what if Mr Campos wants to see that data for himself?

Tough beans. Although Federal law says that patients are supposed to be given ready access to their health records, there's a "loophole" of sorts:

"[I]mplanted defibrillator data is different. The information stays with manufacturers, who use it to monitor and improve their products."

In fairness, it's unclear how useful this data would be to a layman. For one thing, it's apparently transmitted in a proprietary format. For another, raw data may or may not be meaningful to someone without the requisite knowledge (eg med school) to interpret it. On the other hand, Mr C is serious about this, earning a "certificate from the Arrhythmia Technologies Institute."

Ideally, making this information more easily accessible (and meaningful) may not require government intervention. At least one ICD manufacturer "is looking into ways to provide patients with meaningful and actionable information with regard to their implantable devices."

It seems to me that enabling patients to more fully understand what's going on inside their bodies is simply one more tool in the consumer empowerment tool box. And that might be a very good thing.