Very good point you bring up and worthy of further discussion / action by our FR community.
There are 880,000 healthcare data suppliers (HC insurers, providers, pharmacies, etc) that take every bit of your information and sell it to anyone within the HC realm.
No one is tracking or regulating this.
You have no say whatsoever.
The fishbowl has gotten a bit smaller, no?
The Only independent org addressing this is
http://patientprivacyrights.org/
Its founded by a doctor who was shocked to find that HIPAA applied to her, but not commercial healthcare data sharing entities.
See her TEDtalk on the subject in the link provided.
thank you for the link. disgraceful what is happening in this Country.