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Home » e-Patient stories » Hugo Campos at TEDx Cambridge: “Gimme My Damn Data,” Defibrillator Edition

We often say here “Gimme my damn data,” referring to our sentiment that data about our health is our data, about us, created for our well-being. And as the saying goes, “Nothing about me without me.”

And where, we might ask, is that more vital than in the heart?

SPM member Hugo Campos (Twitter @HugoOC) has a cardiac condition that makes him vulnerable to sudden cardiac arrest. Fortunately he has a device, an ICD – implanted cardiac defibrillator – a magical gadget that helps prevent arrest.  That’s good. But he’s also a geek – a data fiend – who would really like to make use of all the data in the ICD, and he can’t get at it. After all, he has a digital pedometer, Zeo sleep system, digital everything, and he tracks all that data – isn’t it ironic that the most important data is hidden from view?

So last fall at TEDx Cambridge, he gave this nine minute talk that makes the case – compellingly, I think – for letting him do as much as he can to use his heart’s data to save his own life. And tells the TEDx world about SPM, and e-patients “shifting from being mere passengers to responsible drivers of their health.” Spread the word!

 

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