Please see my long-overdue post contributing to the @GetOurHealthData movement, on their blog.
The more I’ve thought about all the different issues around data transfer, meaningful use, APIs and everything, the more I’ve approached the inescapable conclusion that there’s only one answer: most medical record vendors say they’re paralyzed about this and too backlogged with other work, but we still have health problems to solve. So I say, we deserve a big freakin’ spigot attached to the EMRs, to just spew our data to us.
Not an endless series of “pretty please please give me my dying husband’s record, please” for an absurd amount of money (SPM pioneer Regina Holliday’s true story); a spigot so we just turn it on and it flows. To us – the people who have more need for it than anyone else, to manage our own and our families’ health.
I have many good friends in the health IT world who know many things about the difficulties of moving health data around. Fine: give it to us, in its raw form, and we’ll find vendors who can figure it out, if you folks in the industry can’t. Besides, I know you have a huge regulatory backlog of things you have to do – let us cope with the data; you just give it to us.
Give us a great big spewing medical record spigot. Give us our DaM data – Data About Me!