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