A movement is born: “Gimme My Damn Data”
Watch this three minute video, and wonder: why would three Deloitte consultants (plus two sons and a wife) record a music video about patient access to the medical record?
The answer is in the song itself: “It’s all about me, so it’s mine.” Hat tip to Ross Martin MD for writing this phenomenal song and producing the video!
If you don’t know why this is important, please catch up, via these previous posts, about how my desire to improve healthcare landed on the front page of the newspaper:
• Monday: A cold day in hell, 2009: why I said yes to Google Health
• Tuesday: An information quality trainwreck: Google Health revealed the mess in my hospital’s data
• Wednesday: My health data errors exploded in the newspaper. Why?
Birth of a movement: the back story
As detailed in those previous posts, this all started when I decided in 2009 that innovation in healthcare is important (duh), and that innovators can’t develop cool new tools if they can’t get at our data. So I tried to put my health data in a place where app developers could get at it: Google Health, which would happily accept whatever my hospital sent it, and let authorized apps download it.
Big mistake, though, because Google Health blindly accepted anything anyone sent it, and my hospital sent insane crap (Tuesday’s post).
IT lesson #1: if you’re going to accept data for a particular purpose, you need a validation layer that ensures you’re not getting insane crap.
They were guilty of blind faith: “Hey, if a hospital sent it, they must know what they’re doing, right? I mean, they’re the experts, right?” #Fail. (Microsoft HealthVault, a competing product, did offer a sort of “holding pen” where incoming data could be inspected.)
The ensuing earthquake ended up on page 1 of the Globe on 4/13/09, just a week before the “Health 2.0 meets Ix” conference. My hospital’s CIO Dr. Halamka and Google Health product manager Roni Zeiger were on stage when Matthew Holt stepped out and asked, “Is e-Patient Dave here?” I was up in the balcony (because they had electric outlets).
When I stood up, some thought I looked like the Pope. (I am not making this up.) Twitter loved it:
I had no idea what was going on around me. All I knew was that I had tried to share my health data to encourage innovation, what I got was insane crap, and everyone in the industry was astonished, and looking at me to explain it, of all things.
Nancy Shute, freelancing for US News, was in the audience, and I ended up in their Best Hospitals issue. Lygeia Ricciardi, future “consumerista” for ONC, was freelancing in the audience, and told her client, attorney Deven McGraw of the Center for Democracy and Technology, to invite me to their DC discussions of patient access to medical records.
And Gunther Eysenbach, creator of the prodigious JMIR journal network, was there, and invited me to be the keynote speaker at his famous “Medicine 2.0” conference that September.
I’d never had such an invitation. As spring turned to summer my life was spinning out of control with media requests and more, and Eysenbach kept asking, “What will be the title of your keynote?? I need to know, for our publicity.”
In July I finally burst out, “I don’t know — just call it Gimme my damn data, because you can’t be trusted.” Little did I know he would publish it just like that, and it would stick. It became the title of that keynote, and then health IT wizard Keith Boone (@Motorcycle_Guy) made it into the e-Patient Rap. And when I used it in my TED Talk in 2011, it became a meme of its own: it turned into a coffee mug (no longer available for sale) —
And then Ross Martin wrote that freaking song based on it, with cameos by illuminati at the TEDMED 2012 conference (Todd Park, Chief Technology Officer at HHS; Jamie Heywood, CEO of PatientsLikeMe; my doctor, Danny Sands). Importantly, Ross’s wife Kym (featured in the video) is more polite than us, and proposed changing “damn” to DaM: Data About Me, which is perfect. As the song says, “It’s all about me, so it’s mine.”
(Side note: that August I was chatting about all this with spirit guide Susannah Fox, and said, “I want to pursue this work, but I’m just out of cancer so I can’t afford to quit my job and lose health insurance … what I’d really like is a part time job with full benefits.” The next day my CEO called me in and said “You’re spending too much time in Washington. We’re cutting your job in half, but don’t worry, you’ll still have full benefits.”
If Susannah Fox is your spirit guide, be careful what you wish for.)
I’ll repeat: Do you know what’s in your medical record??
Is it accurate? Is your mom’s? Can you count on your clinicians to be perfect? Will they welcome your help in getting it right?
And if they don’t, what do you think about that? Is that okay with you?
Want a punch-in-the-gut example of why this is important? Ross’s wife Kym has had multiple cancers as a result of being bombarded with radiation when she had lymphoma as a young woman. In her most recent bout, the docs wanted to know how much radiation she’d had, to optimize the new treatment. But the records had been discarded because nobody imagined anyone would ever need them.
See what I mean?
In the USA, GetMyHealthData.org has a ton of information on your legal rights and practical tips for getting a copy — requesting corrections, which they are legally required to do.
It turns out that for many hospitals and physician practices, it’s really not that easy for them to do what’s required by law: give you a copy of everything they have about you. Their system may be too clunky and junky to do what’s required.
And that’s where FHIR comes in.
FHIR (“fire,” and yes they welcome puns) is the Fast Healthcare Interoperability Resource project. They’ve been working for years to develop software standards to let our data flow easily from place to place. And it appears to be working … not quite mature, but close enough for us all to start a bit of heavy breathing about how excited we might be.
The FHIR Developer Days conference is next week in the Seattle area. FHIR people are mostly focused on moving data from one care provider to another, but I’m advocating that they also enable applications that are purely about us, the consumers, the patients. Because no matter what the professionals dream up, patients are the ones for whose needs the whole industry exists.
And sometimes we patients need things that go beyond what the industry people dreamed up. Instead of mandating that companies change their agendas, all we’re saying is Give us our DaM data — data about me — and we’ll take it from there.
Just as I intended ten freaking years ago, which still isn’t reality. But now it’s within reach. I can taste it.
Tomorrow: Can FHIR provide what I thought Google would, a decade ago?
