Selling names to AIM Cos and HIPAA (read this!)

[sntm]

For those of you not familiar with HIPAA, it is the bizarro governmental regulation initially intended to make health insurance more portable which ballooned into rules about privacy of protected health information.

In my clinical trials class today, I learned that all patients have the legal right to request a list of every disclosure a health care provider has made of your information, including those to marketing firms. They have right to sell it, but you also have the right to know that they sold it.

Hardly anyone does this (usually 1 person per hospital per 3-5 years.) It occurred to me that it would be interesting if we all start requesting this information and then using that to push for hospitals to stop releasing it without consent. At the very least, it would be interesting if hospitals suddenly got a lot of ticked-off mamas wanting to know why they were getting cans of artificial formula in the mail all the time.

[rosie29]

I thought that HIPAA stated that hospitals and doctors couldn't release your info at all w/o your permission. Apparently I'm incorrect on this???

[Lula's Mom]

That's what I thought too! I read the form and the wording was really weird, made me nervous... I wasn't going to sign it. The nurse told me it was to protect my dd's privacy.

[soccerchic21]

I am wondering...when you sign your name to any dr. or hospital paperwork what if you wrote "do not sell or give my name out to any 3rd party"

Would it be against the law if they then sold your name?

[sntm]

There are certain releases that are allowed by law if a waiver of consent is granted by the IRB (Institutional Review Board) -- for example, when JCAHO looks at hospitals for accreditation, they can look at protected health information to determine if hospitals are meeting standards of care. Or certain forms of research or quality assurance projects (like the one I'm doing to determine if a new insulin policy in our ICU is helping or hurting patients). Or for another example, if you were diagnosed with breast cancer, a support group could apply to receive your information to let you know that they are available. I'm not actually sure where marketing falls under that. It's bizarrely complicated.

HIPAA regulates when and how your information can be released, dramatically, but doesn't prevent any release. Which is a necessary thing overall, IMO, though I think that use for that type of marketing is unethical. I just thought this was a novel way to use it to prove a point with hospitals that patients are unhappy with it. It would only take a few patients per hospital requesting that info and complaining about the marketing specifically for admins to notice the dramatic change. Maybe a crazy idea!

[Kari_mom]

I don't think it is a crazy idea. I would do it but I have no evidence that my hospital sold my name, I didn't get any formula samples in the mail with my last pregnancy. Maybe I should call the hospital to thank them!

I wonder what kind of hoops they would make you jump through for the information. Pre-HIPAA, I called Similac once to ask where they got my address to send me formula and they said that they could release the information to me only if I sent a notarized letter verifying my identity.

Related OT: I worked for 11 years in clinical trials. Very interesting work.