Hugo Campos: 10 Years with an Implantable Cardiac Device and *Almost* No Data Access
“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
Introduction to the Quantified Self Symposium 2018
Reza Mirza: The History and Future of Single-Subject Science
Hugo Campos: 10 Years With An Implantable Cardiac Device, Still No Data Access
Jana Beck: Carb Intake and 60 Lipid Measurements
Azure Grant: Lessons from Blood Testers, a Participant-Led Project
Dorothy D. Sears: Circadian Rhythms and Cardiometabolic Health
Carsten Skarke: Characterizing the Chronobiome with “Supertrackers”
Whitney E. Boesel: Cholesterol Variability Across Postpartum Menstrual Cycles
Xiao Li: Finding the Signal in Rich Self-Collected Data
Jeffrey Olgin: Data Aggregation for N-of-1 to “N-of-Many-Ones”
Dana Lewis: Social Infrastructure for Participant-Led Research
Camille Nebeker: Informed Consent, Self-Consent
Steven Steinhubl: Where “All of Us” Meets All of Us
Sunita Vohra: What N-of-1 Can Do
