“In 2007, I learned that my implantable defibrillator could and would be monitored remotely. I was very excited and I asked the doctor, what is the URL for the patient website? He said, there is no patient website. The sad reality is that to date, some things really haven’t changed.” — Hugo Campos
Hugo Campos has been at the forefront of the battle to give patients with implanted cardiac devices access to their medical data. In July 2015, he was honored by the White House as a Champion of Change for Precision Medicine for his data liberation advocacy. Here, he offers an illuminating account of self-tracking and his quest for data access: Years after his own defibrillator was implanted, Hugo ended up having to use a different, much simpler heart tracking device to correctly diagnose his atrial fibrillation, even though the instrument he carried around in his body was much more sensitive and had all the necessary data stored. In fact, the only period of time he managed to get access to his defibrillator data was when he nabbed a used pacemaker programming unit from Ebay and used it to spy on himself.
Highlights from the QS Symposium 2018