Okay, folks … I want you to be sure that you are sitting down for this one. Sitting? Good. Now, take your left hand and firmly cup your jaw so that it cannot fall to the floor. Ready?
Facebook had plans to take health records – such as a patient’s age, prescriptions and number of hospital visits – and link it to their Facebook data. Facebook had already approached hospitals and health organizations with the idea, touting that it could (somehow?) help improve patient care. “For example, the Facebook data might reveal that a patient did not have many friends or did not receive many messages, so might need a nurse to visit them at home. It might also reveal that a patient did not speak English as their first language, which would help the hospital plan the person’s care.” Pardon, but wouldn’t the hospital already be aware that the patient does not speak English???
EXCUSE ME?!?!?!! Has Mark Zuckerberg and his gang never heard of a little thing we have here called HIPAA? Back in the day (1996 and after) “bean-counter Jill” was responsible for paying all the company employees medical premiums. I did not have access to their medical records, but simply because I paid their premiums, by law I had to take some 30 hours of HIPAA training so that I would understand patient privacy laws! I have since forgotten more than I knew, but having a daughter who is an RN, one thing I do know, and that is that patient information is to be strictly guarded, and even a family member may not gain access to it without the express, written consent of the patient. But Facebook, the company who allowed the data from some 87 million users to be breached and harvested, might have gained access to our medical information???
Cathleen Gates, from the American College of Cardiology, said it had been “engaged in discussions with Facebook” concerning the use of anonymized data to further scientific research. Facebook said the work had “not progressed past the planning phase” and said it had “not received, shared or analysed anyone’s data”.
The plan has been put on hold indefinitely, given that Facebook is currently under intense fire for its ties to Cambridge Analytica and the date breaches that occurred during the 2016 election. Now, I ask you, if Facebook couldn’t even protect our ‘name, rank & serial number’, do you really want them to know about your latest gall bladder surgery, miscarriage or toenail fungus medication?
Facebook says the project is on ‘hiatus’ while they focus on their latest trials and tribulations, but the mere fact that this project was even conceived of and apparently taken seriously by at least some hospitals and medical organizations, that medical facilities were considering contributing our private data, is highly disturbing! More than once in the past year, I have considered quitting Facebook for a myriad of reasons, but have always stopped short, for it is the best means I have for staying in touch with friends, nieces and nephews who live hundreds of miles away. But at this latest, at the very thought that Facebook might have attempted such an invasion of our privacy, I am seriously re-considering.
One question I have … Facebook says it asked the hospitals to share only “anonymized” data, but they would then match it to specific users. Obviously, if they would be able to match it to a specific user, it wasn’t to be anonymized after all. Facebook says the data would have been used only for research conducted by the medical community. Mmm hmmm. 🙄 And I’ve got a great little bridge for sale in Brooklyn, too.
Trust, folks, is a funny thing. It can take years and years of hard work, whether we are talking about a relationship between two people, or between a business and its customers, to build the walls of trust. And with just one breach, a single lie, the walls can come crumbling down. Facebook has lost the public trust, and at best, it may take them a decade or better to re-build it, if it can even be rebuilt. For me, the medical community lost my trust years ago, but with HIPAA, I at least felt my personal/medical information was secure. Apparently, once again, I was wrong.
Note to Readers: Just as I finished this post and was about to schedule it for this morning, I realized that it would be Saturday morning. I haven’t the energy to write another tonight, so we will have Saturday Surprise on Sunday this week!