Question of Privacy and Hipaa

bonnielu · ‎03-11-2010

Third time this happened to me. I feel "invaded." I have and had been "invited" to be part of trials, studies for medical conditions real or not so real. The latest situation was that I fell and it took me two months to recover from sciatic pain. The next thing I know I get in the mail an invite to join a study about arthritis. Before that it was a sleep study for high cholesterol and before that I don't even remember. All three requests came by mail and were by research hospitals or programs. The only people that would have known were my doctor and my insurance company (as well as Medicare).

I am not happy. My business only..... and in all three cases the diagnosis was not even accurate. I do not have arthritis nor do I have high anything. I am a senior and I guess that is some sort of illness and makes me subject to all this fun.

I reported this last request and am hoping that I can do something to stop the next time for me and for others. It would seem that it would be totally illegal under the Hipaa but I am sure they have some loophole that should be closed. In each case when I called them I was told they did not know how they got my information and I was on some list...

Has anyone had this happen to them? What did you do? And do you have any advice for me?

3suwm5 · ‎06-15-2016

@bonnielu wrote:
Third time this happened to me. I feel "invaded." I have and had been "invited" to be part of trials, studies for medical conditions real or not so real. The latest situation was that I fell and it took me two months to recover from sciatic pain. The next thing I know I get in the mail an invite to join a study about arthritis. Before that it was a sleep study for high cholesterol and before that I don't even remember. All three requests came by mail and were by research hospitals or programs. The only people that would have known were my doctor and my insurance company (as well as Medicare).

I am not happy. My business only..... and in all three cases the diagnosis was not even accurate. I do not have arthritis nor do I have high anything. I am a senior and I guess that is some sort of illness and makes me subject to all this fun.

I reported this last request and am hoping that I can do something to stop the next time for me and for others. It would seem that it would be totally illegal under the Hipaa but I am sure they have some loophole that should be closed. In each case when I called them I was told they did not know how they got my information and I was on some list...

Has anyone had this happen to them? What did you do? And do you have any advice for me?

@bonnielu Yes, I did. I just continued to ignore the letters and they stopped. It may be that your insurance has given your name or your Dr. They feel it is a service they are doing for you, that it may benefit you in some way.

Mrsq2022 · ‎03-10-2010

I'd say high cholesterol and arthritis are pretty common conditions for seniors, and if you are a member of AARP or any other age-identifying mailing, you will likely get marketed to with "senior" products. I never fill out surveys or contests to win prizes because they always contain fine print that they will sell your information.

It can be as simple as you filling out a rebate form for "Tums" - your information is now shared and told to whatever company wanted a pool of people with heartburn to market to...Another place is store "rewards cards" where they track your purchases. If you regularly purchase Alleve, you bet the arthritis studies will find you!

bonnielu · ‎03-11-2010

Doctor denied it as did the insurance company. I find it rather strange since I certainly did not elect myself for such an honor.

on the bay · ‎03-09-2010

@bonnielu wrote:
Doctor denied it as did the insurance company. I find it rather strange since I certainly did not elect myself for such an honor.

@bonnielu~

Yes, I have had this same thing happen. Right after an appointment at some new medical facility. I did the same as you-call and ask to have my name taken off their mailing and asked where they got my info-they say they don't know blah blah. And yes, I have had insurance and doctors say they don't know where they got the info, but I think it does come from probably the insurance and forms we will fill out at doctor's offices.

Because when I've actually read that whole "privacy practice" they always ask you to sign a page saying you have received them (even when they haven't given them to you yet!-that's another stupid thing-I always say but I can't sign it until I receive and read them!)

It does say we may share your info with other blah blah blah .

So my point and I originally had one lol, is that I will state on their forms you fill out at the office that I don't want my address, phone, name shared with any other businesses, marketers, "affiliates" and you will see that word affiliates often, like yes they are doing you a great big favor to mail you all kinds of things that you don't want or need or have any relation to what you are going through.

I feel the same as you. It is an invasion of privacy and I don't want things sent to me that I don't ask for. I call every one though every time to have my name taken off the list, or I put "refused-return to sender" with an arrow going back to their address (my mother taught me that)

"If you walk the footsteps of a stranger, you'll learn things you never knew. Can you sing with all the voices of the mountains? can you paint with all the colors of the wind?"

Halidon · ‎12-18-2014

I agree with the poster up thread, just ignore and they'll probably cease.

KarenQVC · ‎05-13-2010

I pay "no never mind" to all that mail and phone stuff for old people. I could go crazy if I cared to.

Kachina624 · ‎03-10-2010

There is undoubtedly a service that recruits patients meeting certain general criteria like age, for studies. Their selection is arbitrary; they're just hoping you have arthritis if that's what the study is for. Most seniors do so to some degree.

There are a million places they could get your name and age. Don't get bent out of shape; just trash any mailings you get and forget about it.

New Mexico☀️Land Of Enchantment

bonnielu · ‎03-11-2010

I guess I feel that I need to trust my doctors and even my insurance company to protect me. And I don't fill out forms or surveys and I am not a person to take any medication other than aspirin if I have a headache. I have had bad reaction to just about everything so I stay away from whatever and find a workaround... as in lowering cholesterol and blood sugar by losing weight and exercising. Works for me.

chrystaltree · ‎05-10-2010

It's HIPPA and the information did not come from your doctor, your hospital or your insurer. I work in the field and I also recceived letters and emails about studies. Interestingly enough, I have spinal stenosis and arthritis and the studies are always for arthritis. I believe that my pharmacy is sharing it's mailing list with the people who recruit for studies, in my case it's studies for pain medication. It makes sense, the pharmacists share the names, addresses and emails of people who take certain pain medications. They get around the privacy thing by not giving out any medical info, just the contact info. Physicians and hospitals would never even do that, the risks are too great. Docs won't risk their licenses for that and hospitals won't risks the bad publicity, law suits and $$$$ fines if they were caught.