I find it astonishing that anybody would NOT want his/her medical records completely private and confidential. Whose business is it that someone had polyps in his colon? Or that a woman had an ovarian cyst? Why should the general public know a couple has infertility issues? The line has to be drawn somewhere; I’d draw it at “Nothing.”
Besides the obvious ick factor of any random person knowing (or being able to find out) the state of your innards and outards, this kind of information can be used to discriminate. An potential employer doesn’t have to tell you the real reason you weren’t hired. Maybe it really is “another candidate was a better fit for us.” Or maybe it’s that you’ve had pneumonia three times in the last two years, or are seeing a fertility doctor.
HIPPA requirements can increase the difficulty of transferring medial records between multiple doctors, as well as making it difficult for researchers to obtain epidemiological data. For my part I feel that the possibility of some stranger knowing my medical history is counter acted by my desire to further science, so I try as much as possible to agree to the free sharing of my information.
One of the big things was that if your insurance company got wind of any medical conditions you had failed to disclose they could decide to cancel your insurance. With Obamacare this issue should hopefully be mitigated.
Actually HIPAA also requires that medical information MUST be provided to a patient and to anyone designated. It’s part of the “portability” provision. It does not increase the difficulty of transferring medical records other than requiring that the person being treated consents to such transfer.
I’ve actually done this a couple of times within the last few years. Once, I was simply changing doctors because I was not satisfied with the first one I consulted. The second time, I was treated for an emergency while out of state, and naturally wanted follow-up care with my own doctors at home instead of having to travel back to the out-of-state doctor. The hospital in the latter case was dragging their feet and putting up obstacles, and I threatened them with a HIPAA complaint.
ETA: I don’t mind helping to advance science, but I don’t want random strangers knowing my medical history if it’s identified with me.
When my last doctor packed up shop a few years ago, he tried to charge me $15 per page for my records. Now I get a copy of everything every time and keep it in a ready-to-distribute format.
Is a HIPAA complaint effective in these situations? I’ll have to remember to be a jerk next time the $15/page comes up.
So would you support the NIH or CDC or similar having anonymized access to your records as a groupset (based on county/zip code/whatever)?
I would have no problem with information being given anonymously, part of a statistical set.
Also, I believe there are situations where, for public health purposes, a doctor is required to provide information. The data about X number of flu cases in a given region comes from somewhere.
As far as what happens if you make a complaint, there’s a lot of information here at the U.S. Department of Health & Human Services web site.
