Pharmas Getting Around HIPAA, Thanks To You
The Health Insurance Portability and Accountability Act (HIPAA) requires a number of protections for the electronic storage and transportation of personal health care and private information in a vastly unregulated environment. Title II, in particular, forces health care providers, drug companies, and other entities who handle patient data to provide a number of administrative, technical, and physical protections. Social networking sites like the health oriented Inspire.com allow drug companies to get around the requirements of HIPAA and other protections, all with your help.
Inspire, which has around 100,000 members, is used by its members to discuss and share medical conditions they have or are concerned about. The site is also used by at least 4 major pharma companies to target potential recruits in clinical trials.
Pharmaceutical companies get easy online access to highly engaged populations with specific medical conditions. “One day we come to you and say, ‘There’s a clinical trial going on, here’s some information, now it’s your decision.’ It lets the patients raise their hand and say, ‘I want to participate’,” says Inspire’s founder, Brian Loew.
Patients releasing their own medical histories and personal information are not covered under HIPAA, so people posting their medical information on blogs, chat rooms, or social networking sites may do so – but the site owners are not required to follow the provisions of HIPAA. To complicate matters, Inspire’s privacy policy (which you ‘agree’ to when you sign up) allows the company to share your medical information (albeit without disclosing any information directly tying you to the data – that’s your job).
Fourth, we may share personal information with entities that are not part of the ClinicaHealth family on an aggregate or other basis that does not disclose your identity or contain individually identifiable personal information.
They don’t have to. You can do it yourself. Inspire doesn’t require you to have an account with them to search and view other people’s profiles. A quick look on their homepage turned up user martzj, who lives in Newport News, Virginia and had a massive heart attack when she was 41 in 1996. Join as a member, and you can see most everyone else’s full profiles and medical histories.
By posting your medical history on any website, as a patient, you are voluntarily opting out of HIPAA and most every other privacy protection and allowing companies to harvest potentially damning information. If you want advice about your diabetes, heart disease, or toe fungus, talk to your doctor, not the entire world.
8 thoughts on “Pharmas Getting Around HIPAA, Thanks To You”
“If you want advice about your diabetes, heart disease, or toe fungus, talk to your doctor, not the entire world.”
That is, of course, only if you care about the privacy of whatever it is that you’re sharing. I don’t really care if anyone knows I broke my wrist when I was 9, but maybe I want to join a broken-wrist group and find out the latest in post-fracture wrist health. I imagine a lot of people that have diabetes aren’t also living in fear of people knowing, either. STDs, maybe – but that’s a far cry from discussing recipes for sugar free brownies.
Even if members are all being targeted for clinical trials, that still seems fine to me. Clinical trials are, after all, how new treatments are discovered and vetted…and there’s no obligation to participate. In fact, I would think people with serious medical problems would love to hear about clinical trials that may wind up helping them.
I really don’t see what the boogeyman here is…HIPAA applies to doctors who necessarily have to hang on to EVERY piece of information about you – height, weight, disease history, blood type, cholesterol, race, family history, etc. Signing up for a support group because you have lupus doesn’t seem to obligate you to send in a fax of your entire medical chart. If it weren’t for this so-called HIPAA loophole, there would basically be no way to find any sort of support system for whatever ailment you might have.
Most people don’t really care about privacy (at least in action). Insurance companies can mine this information and deny coverage or raise rates based on this coverage. What if you tell your life insurance company you don’t smoke but announce on sites like Inspire that you’re trying to quit a 2-pack a day habit?
This can all negatively impact patients.
Companies will begin to mine this information from a variety of sources more effectively – and they’re not interested in getting more people for clinical trials. It’s about raising the bottom line.
Rather than a support group, seeking the professional medical advice of several doctors is probably better for your wrist, than a bunch of people who probably are speaking from anecdotal experiences.
It’s just easier to go online and post away…
Great post! I’ve been researching this topic for quite some time. 😕
Its good to see some good people keeping their site up, one of my other favorite sites quit working the other day for no appearant reason.
Best you should make changes to the page subject title Security Musings » Blog Archive » Pharmas Getting Around HIPAA, Thanks To You to more suited for your content you create. I liked the the writing even sononetheless.
Happy New Year!
Comments are closed.