So as I was participating in the weekly #hcsm tweet chat tonight, there was a discussion around health records and data and who owns what. I’m not sure if I knew this previously or not, but come to find out: in the state of Michigan, your health records are actually owned by the healthcare providers.
http://youtu.be/GHFEjVjqVIA via Eric Topol
Now don’t get me wrong, when it comes to personal information, I’m one of the most transparent people I know. None of my social media accounts are private or locked down, I blog about my health information, and I regularly share health experiences on social media. That being said, it’s not about privacy necessarily, to me.
In my opinion (and I would argue most others), your medical results and health records should belong to you. Who paid for the tests/treatments? I did. Who had to physically and mentally endure all of that? I did. Who has to live with those results and diagnoses? I do. I mean, for effs sake, it’s my own body!
I know this is partially an exaggeration, but it makes me feel weirdly and creepily like my body is just a host to be harvested for healthcare providers to own. Gross! Obviously, I know that isn’t the case, but for them to be the owners of my medical records, it feels a bit ‘Big Brother’ to me.
Here’s where it’s a double-edged sword. I would love to utilize healthcare records and health data to transform the care model. Think using wearable devices to send data and readings to your physician. Or using social media to interact with your doctor, then taking it offline for specific questions (due to HIPAA). That would transform the care of patients, especially those of us with chronic diseases and undergoing the disease management process.
But why don’t I own that information? It kills me when I have to PAY to mail my records and get a copy of them. Seriously?!
There’s something wrong with a law that takes data that is as individualized and personal as health care data and suddenly removes ownership from the individual and allows a doctor and its office to have complete control. It’s like we’ve found a loophole to HIPAA. Or we’re reading the small/fine print here.
NOT COOL, Michigan. NOT COOL.
What do you think?