In 2013, during a dimly-lit presentation at Stanford’s MedX conference, Dr. Stephen Friend told an audience about the future of medical research.
“Imagine ten trials, several thousand patients,” said Friend, the founder of Seattle-based Sage Bionetworks, a nonprofit that champions open science and data sharing. “Here you have genetic information, and you have what drugs they took, how they did. Put that up in the cloud, and you have a place where people can go and query it, [where] they can make discoveries.” In this scenario, Friend said, patients would be able to control who could access their information, and for which purposes. But their health data would be effectively open-sourced.
The crowd was receptive. Several people looking to share their data with scientists stood up to ask what options they had. There were a few open-source health data projects in the works, Friend replied, but nothing fully-formed. “We’re pretty close,” he reassured them.
He was closer than he thought…
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