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

Scott Mace, for HealthLeaders Media, August 6, 2013

"I did everything and more than what you're supposed to do, but it still doesn't work very well, so I'm an outlier in many respects," McCollister-Slipp tells me. "There's a lot that you could learn from these big sets of EHR or registry data that people aren't able to access, because somebody has ownership over it. They're afraid that somebody else might publish something from the data set that they've collected, that they might want to. It might occur to them to study and publish on one day, so they don't release it to others to be able to access and to analyze.

As a result, McCollister-Slipp says, "we've got this rich repository of data all over the place that only a few select folks have access to, and it frustrates me incredibly. There's so much that we need to learn in terms of generating better evidence for diabetes, especially type 1 diabetes, and the real experts can't access the data, because it's being held up in these data silos."

Every data point in those data silos started with a patient, and while it remains important to protect patient identity, it is just as important to make that data appropriately available to those who would analyze and theorize and play with the data in unimagined ways in order to identify new patterns or correlations that today's healthcare system, with its antiquated system of clinical trials, cannot unlock fast enough.

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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.