Amy Tenderich writes:
The fact is, a handful of manufacturers currently have a stronghold on our diabetes data. Their systems collect this vital health data for us, but are designed to withhold it so that we rely on their products exclusively to access it, share it, or analyze it.
More and more patients are finding this intolerable, and are fed up with waiting for the Pharma industry to embrace long-overdue open standards.
I’m a bit obsessed with this issue myself, and made it the crux of this year’s DiabetesMine Innovation Summit event. And I keep hearing about patients who are taking matters into their own hands. One of those is Benjamin West, a thirty-something type 1 software developer who lives in San Francisco and works at the networking company Meraki (they do the wifi for Motel 6 and Peet’s coffee). In his free time, he’s creating a web-based “sandbox” and recruiting other tech-savvy PWDs to help him crack the code on diabetes data sharing. No kidding!
“The pump is attached to you and is performing therapy on you. You have the right to know and have access to those medical records. But for some reason, pumps and glucose meters don’t operate that way. The only way to get those records is to go through the vendor. I think there’s a real ethical imperative here, an ethical wrong,” Benjamin says.
Sounds a lot like the ePatient Movement’s rally cry, “Gimme my damn data!”