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:
Update: I wrote about another aspect of this speech on the blog of TrialReach, one of my advisory clients.