Why can't pacemaker users read their own medical data?
In this ten minute TEDx talk, Hugo Campos explains his frustration with
the fact that his pacemaker is designed to let his doctor read his
biometric status, but to stop the patient from doing the same. As a
result, Campos isn't able to use his pacemaker as a diagnostic tool to
help make good choices about eating, exercise and other activities. He
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.
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