SPM member Hugo Campos has had much coverage here and in the media (NPR, SF Chronicle, San Jose Mercury-News) for his desire to see the raw data coming out of his implanted defibrillator. The vendor, Medtronic, feels that its responsibility is to give Hugo’s doctor the data, to understand what episodes happen in Hugo’s heart, to which the device responds by shocking him if necessary.
Hugo, meanwhile, would prefer to understand what‘s happening in his heart so he can avoid episodes. (Imagine someone preferring to stay out of medical trouble, instead of being rescued.)
And when something happens, large or small, he’d like to know what, so he can understand his body and do everything in his power to live in a way that works well for him. That’s why, for instance, despite the vendor’s lack of cooperation, he created a little self-tracking form (as described in his excellent 8 minute TEDx talk) and figured out that scotch whiskey gives him atrial fibrillation.
Without the vendor’s help.
So now he doesn’t drink scotch.
Well, yesterday around noon PT, Hugo had an arrhythmia that made his heart go wonky for a full twenty seconds. It was Not Pleasant – imagine your heart (with known problems) going crazy in a way that doesn’t stop – yet his device didn’t say a thing. (Addition 5/11: as Hugo explained in a comment below, the device did in fact respond, probably saving his life, but he had no way of knowing – it gave him no indication.)
He called 911, then felt better, so he got himself driven to the ER. He has high deductible insurance. He live tweeted it; here’s a Storify capture. He’s fine today, but note the delays and things that could have been catastrophic.
Why can’t he have his data? Why does someone else have to come visit to “interrogate” the device, i.e. get the data out of it? What if the delay had caused preventable harm?
Here’s the storify feed of the tweets: (We’ve had some trouble with the code not working, so if you can’t see tweets below, click here to see it on Storify.com)
Interestingly, on Monday the vendor’s PR account had happily tweeted: “We’ve developed systems 2 help connect patients, drs & manage chronic disease. Learn more about #MDTs CareLink systems.” The next day Hugo replied:
That’s nice. Too bad patients can’t access the data you collect from our implantable devices. #MDTs CareLink #FAIL
And the next day, he had his episode. Quite a portent, eh?