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Disconnected Health Data 'Beyond Absurd,' Says Innovator and Patient

Scott Mace, for HealthLeaders Media, August 6, 2013

It's lack of political will that's keeping the necessary data sharing from happening, she says—company politics and marketplace politics.

The timing is crucial, since there is still an opportunity to establish requirements in Meaningful Use Stage 3 to demand an end to these data silos when those regulations are written in 2014.

"I'm trying to get other people within the diabetes community and other disease communities and groups to join with me," she says. "If we're ever going to have a learning health system, if we're ever going to be able to do real outcomes research for diseases like type 1 diabetes, we need this data to be collected into the EHR. Outcomes for type 1 diabetes are horrible."

The entire notion of a learning health system is worth a column of its own. Meanwhile, I wish McCollister-Slipp all the best on her self-described crusade. Meanwhile, be sure to check out ASCO's CancerLinq, which has implications across all of disease management.


Scott Mace is senior technology editor at HealthLeaders Media.
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4 comments on "Disconnected Health Data 'Beyond Absurd,' Says Innovator and Patient"


Manny Hernandez @DiabetesHF (8/13/2013 at 10:17 PM)
Connected health is important to every patient, but for people with diabetes, whose lives are filled with numbers all over the place (blood glucose data, insulin pump data, A1c data, etc. etc.) it is of the essence! I commend Anna for taking on this much needed issue and advocating on behalf of people touched by diabetes and all patients at large.

Harvey (8/8/2013 at 8:21 AM)
Same old same old where the belief is that the commercial sector will do the right thing. As long as there is tax payers dollars funding EMR's there has to be a demand placed on the manufactures for cheap and easy interoperability. With the cost providers are asked to pay for conductivity with ancillary devices (when in the few situations it's even possible)in many cases it becomes cost prohibitive. AS an example it cost from some EMR vendors between $350-$500 just to connect a scale. The dream of a connected medical world is decades away unless our politicians realize that getting elected is not their primary job but doing the right thing is

Carol Miller (8/7/2013 at 9:59 PM)
Great article, and thank you Anna for taking on such a complex and important cause to so many who live daily with and manage chronic diseases.