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Hugo’s collection of ICDs

My Device, My Body,

Feb 4, 2015 · 8 min read

My Data

An Access Conversation with Hugo Campos

In 2007, after collapsing while rushing to board a train, Hugo Campos was diagnosed with hypertrophic cardiomyopathy, and an ICD (implantable cardioverter defibrillator) was implanted in his chest to track and regulate his heart rhythm. To his great surprise, he discovered that it was very difficult to gain access to the data being generated inside his own body. Today we’re inaugurating what we hope will be a regular series of “QS Conversations” about data access with an interview with Hugo about his long battle for the right to see what’s happening inside himself.

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Hugo Campos

I thought, “Okay, I may not become a cardiac electrophysiologist by any stretch of imagination, but”–to use the firearm metaphor again–”at least I have a basic understanding of gun safety so I don’t shoot myself.”

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Hugo’s ICD programmer

“Okay, we are autonomous people. We’re going to make this call.”

I tell my dad to just take another Lasix and if things don’t improve, we’ll deal with it then. We are making medical decisions. Whether to eat out or not, cook with or without salt, or put ham hocks with the beans that I’m cooking — these are decisions that have an impact. You laugh, but it’s true. It’s naïve to put barriers that prevent or make it difficult for people to make those decisions. What we have to do is to figure out ways to encourage people to make better autonomous decisions.

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Hugo and his father.

Will we have autonomy over ourselves and the data we create? My hope is that the individual becomes the master of their own body.

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