I’m at the 7th annual Health Datapalooza event in Washington. What I have to say here about this conference is subjective, my gut feel, because I haven’t been at most of the previous ones, because they were largely about the business side of health data – there hasn’t been nearly enough focus on the people who actually have the problem: the patient and family.
This year’s different. It’s managed by a different organization (Academy Health), and a lot of strong patient voices are involved, on stage and behind the scenes. There’s a whole Consumer Track, in addition to all the business things going on. And yesterday we saw a speech by somebody who most definitely fits the category “the people who have the problem.”
Vice President Joe Biden’s son Beau died a year ago this month of glioblastoma, a nasty nasty brain cancer. For his talk I left the main room and went to a side viewing room so I could record it on my iPad.
I’m glad I captured it, because he showed himself to be a highly engaged patient/family member (which makes him an e-patient): “When someone dear to you is in trouble, you want to learn as much as you can,” and moved forcefully into how unacceptable it is that important information does not move from hospital to hospital, and how unacceptable it is that researchers think they don’t have to share their data with others.
And he slammed the New England Journal of Medicine editor’s January response to that subject, saying that people who think that way are “data parasites.” (They got slammed for that so fast that within days they backtracked. Good: the culture is changing!)
Biden’s talk gets potent near the end – I don’t often choke up, but I did. It illustrates one of my constant points: no matter who you are, “Patient is not a third person word. Your time will come.” More to the point, though, he hammers home what I said in my March speech to another IT audience:
“Failure to share data – both ways – makes medicine fall short.”
Update: I wrote about another aspect of this speech on the blog of TrialReach, one of my advisory clients.
e-Patient Dave says
I went back to my Twitter feed during the talk and culled these ones – expanded in some cases to fill in missing words:
In his #hdpalooza talk, Biden is showing himself a true e-patient. “When someone dear is in trouble, you try to learn as much as you can”
Biden: “Committed to doing everything in my power to bring the world’s resources to this …to do a decade’s worth of work in the next 5 years”
About the inability to move Beau’s data:
Re ARRA/HITECH: “And we spent $35B(!) to AVOID that kind of thing happening. THIS IS A MATTER OR LIFE & DEATH.” #hdpalooza
I’m a proud supporter of what @NEJM called “data parasites” in January. 1/2 http://dave.pt/1Ty3dPW #hdpalooza
2/2 Researchers, it is NOT about you. Your job exists to serve the people with the problem – the sick. #hdpalooza
“We have to build a network centered around the PATIENT! With OPEN DATA. That’s why you’re here.” #hdpalooza
Biden (to applause): “We’ve gotta publish the RAW data, to turn raw data into knowledge!” #hdpalooza
BOOM – Biden busts @NEJM for Data Parasites fail! “We don’t do that in DARPA, we don’t do it in NASA – only do that in cancer!”
SO glad to hear Biden busting companies for having different data standards so they couldn’t share knowledge during Beau’s case. Walter Reed & MDAnderson #hdpalooza
Angry Biden face:”We need YOU to help us design a way to rate the data for usefulness, to get it to where it’s needed.” #hdpalooza
Biden: “We NEED you. I desperately need your input.” #hdpalooza
Biden, vivid: “If my mom were here she’d say ‘You’re doin’ God’s work.” #hdpalooza (Honestly, you can tell he means it) #hdpalooza
At the end:
Over. Boy, I don’t often do a standing O with a choked throat, but he did it. Whoosh. Tagline: “This MATTERS.” #hdpalooza