Personal medical data that not only does not belong to you but you are not even allowed to access

Why can’t pacemaker users read their own medical data?
[Via Boing Boing]

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.

[More]

If we are not careful, this is where we are headed – huge amounts of personal medical data, collected in multiple silos without any chance of the actual patient ever seeing it.

Usually it is claimed that this is needed to protect the patient. Perhaps but there should not be any barriers if the patient WANTS the data. 

But that is how these companies expect to make money – making doctors pay to access your data. And aggregating all the data to sell or use.


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