How did they know?!

I was diagnosed with a chronic illness last week. I’ve not told anyone, except my husband. He can’t even talk to ME about it and he hasn’t been anywhere near the computer, so I know he hasn’t told anyone.
Yesterday I got a letter from a company that recruits people for clinical research studies for specific diseases asking if I’d participate in a study concerning my disease.

How the hell did they find out?! They almost had to know before I did! They even have a website personalized to me.

I e-mailed my healthcare provider, but they deny giving my name to anyone.

Underpaid clerks is most likely the answer.

It amazes me companies spend millions to protect from computer theft then hire someone for minimum wage and give him access to all the same info a computer thief would have.

I used to audit some hotels and I found clerks working for a dollar more than minimum harvesting people’s credit card numbers and selling them.

Twice I found someone trying to steal my info and get credit and traced it back to H/R clerks using my job applications. This is why you never put your SS# on a job form until you are sure they are serious about you.

Even then it doesn’t work. The dumb H/R clerk (at corporate) did this and they actually HIRED me. He probably wouldn’t have got caught if they hadn’t hired me.

So you had the tests done. Some low paid clerk has access to the results and sells them on the side to the company that sent you the information

It could be any clerk from the doctor’s office to the place performing the tests to anywhere along the line. It could be a courier that carries the results opening and resealing.

And it’s not a new thing. I recall reading a book on AT&T history and a major selling point for direct dialing (as opposed to having the operator place your call) was that operators were accused of directing calls to certain businesses. For example you want Acme Hardware and the operator lied and says “The line is busy shall I try Central Hardware instead”

Maxx, I guess it could be that, but the healthcare system I belong to pays their people pretty well and it’s completely self-contained. Lab and pharmacy are all connected and part of my co-pay. I guess, someone could need a new boat.

Maybe part of your plan included pre-authorization to have your info sent to such companies? If not, file a HIIPA complaint against the company doing the study, you might find out where they got the info from.

picunurse, it might not be a clerk at the healthcare system, it might be someone at the insurance company. The pay for claims processors is pretty low. Either way, there’s a problem and both companies need to know about the possibility of someone selling your information.

runner pat has the right idea. File a HIPAA complaint; include your healthcare company, the insurance company and the company doing the study. Nothing may come of the complaint itself but all three companies will be watched for further leaks.

We had a similar, if more amusing, thing happen when our first son A was born 18 years ago. We didn’t know before he was born if he would be a boy or a girl, so had picked out names (A and M) for both cases. Not long after A was born we started getting junk mailings addressed to M or the parents of M. These mailings have continued ever since, even following us when we moved. It’s been very interesting following this young woman’s life. Those were some pretty fancy limos she had to choose from for the prom.

Two possibilities have occurred to us: One, that we’re getting leakage from the alternative universe in which our child was born a girl. The other is that we mentioned the name to someone in the healthcare system who then sold it to a marketer. I’m still leaning toward the former explanation.

Not exactly parallel, but it seems my ex-husband has filed a motion regarding child support. All in one week I received nine or ten letters from law firms urging me not to face Ex vs. Dee unrepresented. The thing is, I hadn’t heard from him, or received a notice to appear.

My preference would be to be comforting, but I’m pretty sure that there really is no such thing as privacy anymore. Over the last 12 months my husband has had to see a variety of different doctors. At each office all he has to give is his last name and birthdate, and whoever is doing the intake will say, “Do you live on Montague St? And wear size 10 1/2 shoes?” I suspect that it’s possible that the paragraph that says it’s alright for them to share you info is on page 13 of the 20 page bunch of papers that you have to sign in each office.

I got an invitation to participate in a study after my first appt with a new (to me) OB/Gyn, but it was run by Johns Hopkins.

And recognizing that it isn’t why you started the thread I do want to add that I hope that what you’re dealing with is something you find manageable and that you’re doing okay.

My guess is also some lower level employee at the hopital making a few bucks on the side by selling such info.

Same way Farrah Fawcet’s private health information got out and splashed over every tabloid on the planet. Inside informant out to cash in. (though obviously, much bigger payday through selling celebrity info to tabloids)

I would demand to know how the company obtained the info, since if they are buying such information illegally, they are as culpable as whomever sold it to them, imo.

My health insurance is actually a health co-op; same company that provides care, labs and perscriptions.

I e-mailed the research company, it appears to be a coincidence. I participate in Opinion Outpost. I’ve made a couple hunderd dollars over a couple years. This company is on their list.
The letter was generated because of my age, since most people with this illness are over 50. I didn’t qualify for their study, so no big deal.

I’m still trying to figure out how Target found out I’m pregnant. I got a random mailing from them (totally random as I do not typically shop at Target, do not have a Target credit card, etc.) that said “Hey, look at all this neat baby stuff. And coupons! And, if you use our baby registry, we’ll give you a $20 gift card!” Oh, I should say I hadn’t registered anywhere else either, so they didn’t get my info that way.