Three years ago this month, at the Medicine 2.0 Congress in Toronto (photo at right), I gave my first keynote: “Gimme My Damn Data.” As I detailed recently, it was the beginning of a movement. And now, this weekend at the same event (at Harvard Medical School), I’ve been invited to give the closing keynote:
“Gimme My Damn Data, Three Years On: What’s Changed, What Hasn’t, and What Still Needs To.”
I have my own thoughts, but I’m sure you do too. What do you think? One big thing that’s changed is that this is a movement with many voices – I’d love to include yours. Leave a suggestion in a comment here, and if I use it, I’ll credit you!
For starters on What’s Changed:
- ARRA / HITECH: The US stimulus bill, with its billions for adoption of health IT, has rolled out and is causing change.
- Meaningful Use: in the US, we now have regulations that are tugging
- The OpenNotes project has completed; its results will be announced next month. (A massive study to document what does and doesn’t happen if patients get access to their doctors’ actual visit notes.)
Starter on What Hasn’t and What Still Needs To:
- It’s not a reality yet. Many providers still resist.
- You and I don’t legally own our data. If we did, they couldn’t keep it from us.
- Most of us don’t have good patient portals
- It’s practically impossible to pull together data from all sources into a single record.
What else?? I know there are tons more – help me!
Here’s some background information, for those who aren’t familiar with the story.
The subtitle after “Gimme My Damn Data” – which I spoke, but which wasn’t printed in the program – was “…because you guys can’t be trusted with it.” I said that because when I tried to move my medical record to Google Health that March, for some crazy reason my hospital sent my insurance history instead of my actual clinical data. As it happens, my insurance record included all kinds of crazy things: volvulus of the intestine (a lethal condition I never had), a cardiac diagnosis (false) when I was having an infusion of a bone medication, a “bone and cartilage disease” diagnosis when I was having a lump in my tongue looked at.
Fortunately, I’m told, the resulting uproar led to the decision in DC not to use our insurance histories as a basis for our new EMR data! (I’m told that until this all came to light in a Boston Globe story about my data, some people in DC were saying that our insurance data was a good snapshot of our medical history. Not smart: one legitimate billing code in my case was “metastases in the brain or spine,” which I was checked for … it came back “not found” so the billing code was accurate but that’s not valid info about my health.
The full 2009 keynote is in 4 parts on YouTube – see it on my Videos page.