If you’re unfamiliar with home monitoring, it allows for patients to send data from their pacemakers or ICDs over a phone line for a doctor to review. The data transmitted is available to the clinic, the manufacturer, and in some cases even to a third-party contractor. However, it’s not available electronically to patients, even though it is technically ours. If you’ve been to this blog before, you probably already know how I feel about this.
The patient’s commentary is priceless. Here’s how he describes what he finds in the box:
“Oh, a telephone cord. Not a USB cord, a telephone cord.”
“It looks like a telephone answering machine.”
“There’s a switch here for tone or pulse, depending on which type of phone you have. I don’t have either kind.”And how he expresses his disappointment, after reading about data transmission:
“That doesn’t sound very interesting. I’d like to see it printing on my own screen or something. That would be nice.”Yes, I agree. Giving us access to data that is rightfully ours would indeed be very nice, if not the right thing to do.
Unfortunately, Medtronic and other ICD and pacemaker manufacturers don’t see it this way. Dr. Marshall Stanton, VP of Clinical Research at Medtronic’s Cardiac and Vascular Group said at USC’s Body Computing Conference in 2009 that they’re not in the business of providing data to patients. Information collected by the device is only valuable to physicians, and that patients do not wish to see it on a regular basis. Watch Dr. Stanton here (links to YouTube).
I disagree. If you believe, as I do, that outcomes matter and that an empowered patient population will become healthier, manufacturers must share this data with patients in a way that it can be used to change behavior and improve our quality of life and health outcomes.
Above: Medtronic’s CareLink Home Monitoring system next to its cellular accessory (M-Link), introduced earlier this year. The grey contraption with its many wires and boxy companion is not the most attractive thing you can have on your nightstand. And for as long as patients remain excluded from the data loop, it is certainly a sight you’ll not find in my home.