In this TED talk, Hugo Campos explains his frustration with the fact that his ICD collects data, but he – as a patient – is unable to access these data as a diagnostic tool to help make good choices about eating, exercise and other activities.
Hugo Campos writes:
“I have an implantable cardioverter defibrillator (ICD) for primary prevention of sudden cardiac arrest. I have been fighting for my right to access the data collected by the ICD for about 3 years now, without much success. Data about my heart is regularly collected from the implanted device by its manufacturer over remote monitoring.
The modern ICD is a sophisticated computer capable of detecting and treating malignant arrhythmias. It is also capable of wireless telemetry, a feature that is used by all device manufacturers for remote patient monitoring. Today, there are about 5 top manufacturers of pacemakers and ICDs and 1MM patients being remotely monitored on a regular basis. Not a single one of these patients is allowed access to their device’s data.
I am sure you’d agree that this is an objectionable practice and it must be stopped.”