Notifying me when accessing my health data

By August 16, 2015 Advocate, ePatient, Informaticist, Leader

Why don’t I know when someone, something, anyone accesses my personal health data? I get emails from Apple, Google, my banks, credit cards, Facebook when someone attempts to get access to my financial or social media accounts from a different computer or browser than one I’ve authorized. My bank proactively let’s me know when they suspect fraudulent charges.   But I have no idea when someone opens, adds to, corrects, uses, sells my health data.  I’m pretty much an open book, even pathologically open. After all, I blog about anything.  I still would like to know who’s using my health data. If I knew I may be less open. I may still not care. I know data is big, big business. Social media data, Amazon data, health data.  It can’t be because it’s not technically possible or too complex. I don’t think I want to interfere with that big business (why try?), but it doesn’t interfere for Facebook or my bank to keep me posted, so why would it interfere for my health data.  If the federal government is paying billions to support the electronic health data business through meaningful use incentives, why don’t they require that we be notified of our health data use? Health data sources (hospitals, insurance companies, researchers, etc) spend millions if not billions to prevent hacking, yet hacking occurs regularly. More than 30 million records hacked a year! It takes a long time for companies to discover hacking – often not until thousands of files are hacked.  Seems like I could identify health data hacks sooner and then tell the entity that’s hacked.. Wouldn’t I be flooded with notices every time I went to the doctor or went in the hospital? Not if I could authorize access and permission and even assign other people, clinicians,  and hospitals to authorize on my behalf. My authorizations could be stored on a server accessible to me and accessible to those wanting to exchange my data.  I could go to it to track authorization, change what I allow to whom. What would take for government and industry to want to accomplish this? Is there a threshold of hacking or fines? When I review the literature, little discussion occurs beyond better encryption, more rigid password protection. Why not?  Does this matter to you?

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