A friend of mine was just diagnosed with a serious, but thankfully, non-life-threatening illness. There will be a surgery, and then, hopefully, it will all be in the past. She has all of the obvious worries of her impending major surgery: her health, insurance coverage, recuperation time, leave from work, telling her children. And also, a not-so-obvious one. When asked, “What can we do to help?” Her answer: “Please don’t post anything about this on Facebook.”
It seemed sad that at a time when my friend needs to be taking care of herself, she has the added concern of controlling her privacy on social media. The HIPAA regulations were created in 1996 to protect a patient’s privacy regarding their heath information. The laws specifically allow a patient to request that their information not be shared with “certain groups, people or companies”. We can’t stand too close to someone who is filling a prescription in the pharmacy, lest we have an encyclopedic knowledge of the PDR. We can’t even hold their hand with them in their doctor’s office without their expressed written consent. But there aren’t any regulations stopping us from outing their health issues on social media sites.
My friend’s privacy concern comes on the heels of reports this week that Facebook in considering expanding into the healthcare field by creating “online support communities“. The concept is that Facebook would connect users suffering from various illnesses. Their objective: healthcare communities could increase engagement on Facebook.
Now the last time I checked, it seemed that most people were already pretty engaged on Facebook. Sometimes, they seem over engaged. Facebook itself estimates that the average American spends 40 minutes per day checking a Facebook feed. That’s more than we spend each day on taking care of our pets, exercising or doing volunteer work. And Facebook is by far and away winning the social media war — they have roughly seven times the engagement of Twitter, their closest competitor. I’m pretty sure we don’t need to be spending even more time on Facebook.
Creating on-line support healthcare communities sounds like a nice thing to do. It certainly helps to humanize the company. But call it a hunch, methinks that Mr. Zuckerberg and the folks at Facebook aren’t just concerned with helping their customers cope with health issues.
The privacy issues this venture brings up are mind-boggling. And the burning question: Can users trust their personal medical information to Facebook? After all, they have had numerous privacy breaches in the past and they are still making amends for their “experiment” involving users news feeds. And this time, the privacy stakes will be higher than ever before.
In the New York Times article Disruptions: Seeking Privacy in a Networked Age (Oct. 2012), Dennis Crowley, chief executive of FourSquare, ponders the idea of a service that would allow users to cloak themselves — kind of like Harry Potter’s Invisibility cloak — for a particular time period. “You can imagine a service that says ‘I don’t want my name to show up on any social services for the next three hours’ and then integrates with other social services,” Mr. Crowley said.
So until Facebook can enlist J.K.Rowling to help develop said Invisibility Cloak for their user’s private medical information, I would hold back on joining one of their on-line health communities. Because when all is said and done, J.K. Rowling did a better job protecting her darling than Mark Zuckerberg has done protecting his.