Winn Dixie pharmacy sold my data - twice that I know of.

I was not aware of it until it was brought home to me this week by a telemarketing call after I had filled a prescription at my local Winn Dixie Pharmacy for Insulin after my dog was diagnosed with Diabetes. I swiped my Reward Card to get my Fuel Perks and a couple of days later I received a call from a telemarketer asking if anyone in my family had Diabetes.

The same thing had happened to me last year after my husband had a heart bypass operation and had several prescriptions filled at the same Winn Dixie - telemarketing calls about the Heart. I contacted Winn Dixie and they suggested it was the Doctor's office, it wasn't them. Since I wasn't sure, I did nothing. This time, I know it wasn't the Vet.

I again have contacted Winn Dixie, and I haven't heard anything, but I am researching online. I have filled out the forms for HIPPA and mailed them in. And then - I put in Google, HIPPA + Data Mining and what comes up astounds me! It is not JUST Winn Dixie. It is EVERY Pharmacy. I found the PatientPrivacyRights website and was shocked to see what their FAQ had to say.

"FAQ: Q. Are my prescriptions private? A. No. All 51,000 pharmacies in the U.S. are wired for data mining. You cannot keep your prescriptions private, even if you pay cash. Selling prescription records is a multi-billion dollar a year industry: In 2006 IMS Health reported revenues of $2 Billion for selling prescription records (that’s just one company!)."

This is disgusting. Where is the PRIVACY? What good is that FORM I sign when I go to the Pharmacy when they "assure" me it is all so confidential? I feel raped.

If there is gold, there will be those who want to mine it, and mine it they will.

The reason that much of what we do online is done "for free" is that the information gathered while others watch our internet use is of great value. This is even more true of medical records data. This is why I have argued for a long time that the value of data gathered by EMRs and EHRs has never been figured into the equation as we move to implement more and more of our healthcare record keeping and business processing to electronic means. While pharmaceutical companies, medical researchers and insurance companies are all very very eager for the U.S. to adopt electronic medical records, no one (at least, I've seen no numbers as yet) has ever evaluated how much benefit they will accrue at our collective expense. Yet these entities are not paying for the implementation or use of this technology. It's the taxpayers and the patients (who pay through their taxes, medical bills and insurance premiums). Perhaps we presume that "the market" will figure out what is the right value for this very special commodity. But we haven't begun to determine exactly what the commodity is, who owns (all or part of) it, what rights remain attached to the originators, and what the value of this data is in comparison to clinical or survey research that might be required as a substitute for it.

Regardless, as this information becomes available, "the market" WILL develop around this valuable information. Yet we have far from settled the very basic issues as to who "owns" this information, and to what extent we can trust those holders (if not owners) and users of the information to do so in ways that do not compromise confidentiality, privacy or just plain "I don't want you knowing that about me when I never said you could!". And a lack of regulations around it mean the boundaries of ethics will be pushed before we even begin to define what those are.

Once this goldmine of information is created, it will only be a matter of time before legislators are lobbied by powerful interests to let them have it. I'm not saying that's a good or bad thing. I believe there are good arguments on both sides.

What I'm asking is, Have we, the patients, even thought about this yet?