Where are they getting the marketing information?

I just got a survey call from an unknown company, phone number out of Flagstaff, Arizona. The object of the survey was blood glucose monitoring equipment.

Yes, I’m “out” with my diabetes – and most folk here are, to varying degrees, as well. But… this is the sort of information that I would consider to be limited to my doctor, my pharmacist, and my health insurance company. Right?

OK, and any company I’ve gone through to get a free meter…

So, who’s calling me for a survey? Doctor wouldn’t be concerned about that. Pharmacy? I doubt CVS needs to conduct a market survey to find which strips its customers use. Health insurance company? Maybe. Meter manufacturer? Only if it’s a meter company I’ve given any information, I hope. If it’s any other party, though, I have some serious issues.

I spoke with the agent’s supervisor and got the contact over at the company (TARP) that is conducting the surveys. The contact was not in when I called (not surprising given the hour), but I left voicemail.

FWIW, when I said my primary meter was a Freestyle Flash, the survey closed itself out. So… no further information from there. Maybe because I let her know of all of my meters? Doubt it.

Anyway, if you’re concerned about medical information privacy, here’s something else to consider.

Please note, this should have been in the “GENERAL” group…

Hi Tmana,
I agree with you about privacy. Two weeks after getting out of the hospital for heart surgery I start getting these letters in the mail offering me services fior "heart " patients. I also started getting phone calls on our un-listed phone number from companies with services or products for me a “heart” patient. And to make matters worse a church called me to offer me a Life Line product because I was a “heart” patient. HOW did these people know this? WHO gave them the information? It sure wasn’t me. And why would a hospital give out my private information? And of course, people calling couldn’t tell me who provided my unlisted phone number.
I refuse to answer surveys of any kind and never talk to anyone from any business on our home line. I do give out my cell phone number and the unlisted one is never on any check. It seems that medical privacy is the most abused

They don’t get the information from your pharmacist or physician, that would be a HIPPA violation.

They could get it from a membership list at the ADA or here at TuDiabetes (yes, there could be troll here). They could get it from your insurance company. If you went to a Diabetes expo and signed up for something or registered for something, they could get your name. And yes, any company from who you have requested a free meter or other diabetes related supply.

A few weeks ago I needed a new battery for my meter. I was in the drugstore and didn’t have the meter with me, so I looked up the 800 number on the back of the box for a new meter and gave them a call, thinking it would be a matter of seconds for the customer service rep to tell me which battery to get. But no. Before she would tell me she wanted to know my name, address, phone number, email address, whether I’d ever called before, etc. etc. … At first I refused to answer, and when she told me she couldn’t proceed without all that information, I told her my name was Jane Doe, 123 Main Street, Anytown, USA … It was an epic struggle but I finally got the info. And the battery.

Diabetes is huge money for these people, and the sicker we get, the more money they make. Kinda creepy how that works.

Hi Tmana, I really suspect the meter company maybe sold a list to a marketing firm or something of that nature. When we have a free meter, there is a form that we have to fill out, they say it’s for the warranty, I am really not sure that is the only reason, for us we did fill out that form each time (we have like 5 meters :wink: ), and I am wondering if they can sell that info?! We have not received any D related info by mail be other companies or never contacted though.

There are lots of lists that are maintained about us. Any time we buy something online, we get added to a list, and that includes things like glucose tablets and vitamins and pump or diabetes supplies. Also, if we purchase over-the-counter medications (including test strips) from a pharmacy with one of those “Rewards Cards”, that information gets added to our file and gets sold. CVS may not need the information about what kind of strips any of us use, but that information has value to them because they can sell it to someone in the diabetes industry.
Our doctors and hospitals are supposed to protect our information under HIPPA, but often the protections are imperfect or the fine print allows them to provide access to our information to third parties.
There is a huge industry out there gathering information about us, and that information has value. Everyone is trying to make a buck off us. We are all potential customers, and the marketing industry is trying to target its efforts. In many ways, this is truly reprehensible. I would be very interested to see all of the industry files on myself. They probably know more about me than I do.

The one thing I can tell you is that in TuDiabetes we are VERY respectful and tight with our list of members. We don’t sell, license or share our member’s emails to anybody.

Some members may choose to share their email addresses, phone number or more personally identifiable information publicly here or elsewhere, and -as much as we recommend against that- we have no control over how that information gets used.

I am inclined to agree with you Jonathan about “fine print” allowing our doctors and hospitals providing access to our information to third parties. After I wrote my response above I took more time to think about it. And i am aware that every time a piece of equipment is used on us it is logged in to the insurance company. And every time a “piece” is added to us in surgery it is numbered and that number and information goes back to the manufacturer. It doesn’t matter how tiny a valve is or a screw or bolts or stents or whatever all that goes back to the company and I guess you are right. That list grows and is sold I know that marketing is a big business, but I feel bad about my private information going out as do all the rest of us. I realize we can’t control it, but sometimes the information is just wrong.

Saundra: It is not just our medical information. When my daughter was born 9 years ago, we ordered a couple of things online. Within two weeks, we were flooded with catalogs from companies selling baby items. One of my former law partners is a privacy expert for industry, and part of her focus is making sure that the marketing lists can be sold and used without violating HIPPA and other privacy laws. There really is not much that the little people like us can do, other than to ignore the garbage that gets marketed to us and get our information from neutral, trustworthy sources. It is simply wrong.