Need for real-time access by researchers and doctors to pseudonymized medical records


Posted by Rohan Samarajiva on April 28, 2020  /  0 Comments

I find myself a little defensive when I bring up the needs to access data quickly for policy-relevant research in gatherings dominated by fans of GDPR. Does not stop me, but I keep wondering what they think of me. But reading Siddhartha Mukherjee, a doctor deeply engaged in the fight against COVID-19 makes me feel much better.the System designers and lawyers have forgotten the original purpose of healthcare records: to help cure the patient.

Finally, we need to acknowledge that our E.M.R. systems are worse than an infuriating time sink; in times of crisis, they actively obstruct patient care. We should reimagine the continuous medical record as its founders first envisaged it: as an open, searchable library of a patient’s medical life. Think of it as a kind of intranet: flexible, programmable, easy to use. Right now, its potential as a resource is blocked, not least by the owners of the proprietary software, who maintain it as a closed system, and by complex rules and regulations designed to protect patient privacy. It should be a simple task to encrypt or remove a patient’s identifying details while enlisting his or her medical information for the common good. A storm-forecasting system that warns us after the storm has passed is useless. What we want is an E.M.R. system that’s versatile enough to serve as a tool for everyday use but also as a research application during a crisis, identifying techniques that improve medical outcomes, and disseminating that information to physicians across the country in real time.

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