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Wednesday, December 1, 2010

Data Mining your Medical History

How would you feel if every prescription you took was used to profile you and your doctor?

For a long time companies have been tracking prescription sales by prescriber.  That means every prescription your doctor writes is tracked nationwide.  So when you go to the pharmacy the busy data entry elves track the prescriptions each doctor writes - how many pills, what pills, physicians name and address, location selling the pills and when and where the pills were sold.

Companies like IMS Health, SDI, and Source Healthcare Analytics collect this data and sell it back to the pharmaceutical companies.

So what's this data used for?

According to this article its used for "to better target their marketing to individual physicians, and also to direct safety messages to doctors, to track disease progression, to aid law enforcement, to implement risk-mitigation programs and to do post-marketing surveillance required by the FDA" according to the recent court case listed in the article.

Its likely this data is used for other things as well.  For example, compensating pharmaceutical sales reps and giving kick-backs to doctors.  (I know this never really happens - after all the giant posters hanging on the walls behind the doctors desk promoting the drug of the week are just decorations, right?)

The state of Vermont has tried to make this information private so that it cannot be used without permission - but its law passed 2007 to ban the sale of such data has lost in recent court cases (see linked article).  Apparently use of your "dry" medical information is protected speech and cannot be impinged on by Vermont.

Most chilling in all this, according to the link, is "the appeals court agreed with the data-miners that even information on who's prescribing which drugs to whom is speech that is protected by the First Amendment."

The HIPAA laws do not affect this information.  Specifically, according to this site, your personal information may be used without your consent if "it is used or disclosed for treatment, payment, or health care operations (TPO)."  Reading the rest of the section on HIPAA' shortcomings you will see that any data about you and what you do is easily accessible to pharmaceutical companies and their "associates".

I have to say that I was quite surprised by all of this having working in the pre-HIPAA world of health care for many years.  HIPAA was sold as the be-all and end-all of privacy but in fact it mostly results in silly restrictions.

For example, my mom, who is in her eighties, has a friend whom she was having lunch with who collapsed and went directly to the hospital for some emergency treatment.  HIPAA does not allow my mother to find out which private care home her friend was sent to for recuperation from her hospital stay.  So my mother has to call her friends family to find out where she is.  If her friend changes rooms my mother has to call her friends family to find the new phone number.

However, you can be sure that your private prescription history is readily available to anyone with money to buy it.

The bottom line is other than keeping the whereabouts of elderly people from their friends HIPAA is basically useless in terms of your privacy.  Sure, it keeps the receptionist in the doctors office from babbling about you to some other patient, but that's apparently about it.

There has always been a lot of print-industry talk about "targeted marketing" along with VDP and so forth.  However its clear from this data that we here in print are mere "babes in the woods" when it comes to targeted marketing on a scale like this.

Pharmacy reps are big business as are the billion dollar drugs like Lipitor that they sell.  They make lots of money if they are successful.  Its also safe to say that the "targeting marketing" by these reps could be very, very specific - to a doctor or even a patient.  Though I am sure everyone would deny that it seems very likely to me that a rep could target a specific patient for expensive drugs such as those used for cancer treatment.

No, this is real targeting marketing.  It transcends any thoughts you may have about your own privacy.  Today your medical data is routinely used by workers compensation, Social Security and welfare, Automobile insurance plans that include health benefit, Internet self-help sites, those who collect health data you give voluntarily for surveys or research projects, those who conduct screenings at pharmacies, shopping centers, hometown fairs, or other public places for blood pressure, cholesterol, spinal alignment, and so on, researchers who obtain health data directly from health care providers and of course law enforcement agencies.

Its nice to know that the nice lady at the grocery store kiosk attempting to persuade you to get a screening is a dupe for this kind of data mining.

Bottom line - your medical history is available to anyone who wants to pay for it.

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