We’ve been beating the patient privacy drum here for years, and will continue to do so because we don’t think the message is being fully understood.
When you share and disclose aspects of your personal health with the world, it is something very different than when you share and disclose your favorite books or hobbies or musical groups. They are not the same thing. Books, music and your favorite movie star can’t be used against you (well, at least not until Big Brother takes hold). But your personal health information can.
Think we’re overstating things?
Well, the New Jersey Law Journal published a story yesterday that might make you think again:
Litigation over an insurer’s refusal to pay health benefits for anorexia or bulimia may turn on what is revealed from the alleged sufferers’ e-mails and postings on the social networking sites.
The plaintiffs are suing in federal court in Newark, N.J., on behalf of their minor children, who have been denied benefits by Horizon Blue Cross Blue Shield of New Jersey.
Horizon claims that the children’s online writings, as well as journal and diary entries, could shed light on the causes of the disorders, which determines the insurer’s responsibility for payment. New Jersey law requires coverage of mental illness only if it is biologically based.
Horizon claims the eating problems are not biologically based and that the writings could point to emotional causes. It contends that access to the writings is especially important because the court has barred taking the minors’ depositions.
The cases, Beye v. Horizon, 06-Civ.-5337, and Foley v. Horizon, 06-Civ.-6219, have been consolidated for discovery.
So here we see that a child’s Myspace, blog or LiveJournal entries are going to be used to determine whether their families will have to pay for treatment or not (if they even can afford to do so).
Yes, that’s right: Your online writings could be used in a determination made for or against approval of coverage of your treatment.
Social networks, blogging sites and such only thrive when they publicize as much information as possible about their members. If you have a closed, private social network, it protects members’ privacy, but also keeps others from flocking to the network in the numbers to make such things successful. So most social networks and online communities err on the side of making things public, usually to the detriment of their customers’ privacy.
We love and enjoy the empowerment that online social networks have brought so many people. But we are also painfully aware of just how public the information we make available to them becomes. And, once indexed by a search engine, how virtually impossible it is to thereafter remove such information from the Internet.
How Can I Help Better Protect My Health Information?
Nothing can protect you against a court order that is so general it asks for all of your online writings, no matter what their form or where they occurred. Your only defense in such a demand is to ensure your most sensitive writings are expired or get deleted after a certain amount of time (an option with many forums and bulletin boards, but rare to find in blogs or social networks).
Having said that, you can reduce your public online profile, because if an attorney doesn’t know what to look for, they can’t ask for it in discovery.
Pick what you share with others publicly carefully. Try to find a closed, secure community in which to do so (this is one of the secrets of why mailing lists remain very popular for health concerns, because they are virtually invisible to search engines and the general Internet). When you fill out a profile, if there aren’t privacy options for each field, opt on the side of waiting to share specific health information about yourself until you get a better feel for the community (and its public and search engine profile).
Consider choosing a private journal or blog over a public one. There are more and more blogging choices so that you can even choose to share your entries only with family members and friends. Consider “expiring” entries over time, too. There’s no need to keep a record, forever, of your health or emotional complaints and journey.
Be wary, not paranoid. There’s a fine line between the two, but you shouldn’t let a court case stop you from seeking and receiving the online support and care you need right now. In many cases, you can go back and ask for something to be removed or edited to remove something that may be used against you in the future.
Investigate a social network or community before sharing. Some communities are more open to dealing with your privacy needs than others. Does the community allow you to terminate your account and erase all traces of your posting to the community? Or do they take ownership of everything you write on their site and say they will never delete anything? Most are somewhere between those two extremes, so it’s best to find out what kind of community you’re dealing with ahead of time, before you make significant contributions to it, rather than after the fact and it’s too late to take them back.