NIH's All of Us fills EHR gaps with new data-sharing approach
The All of Us precision medicine program, run by the NIH, has gathered health data from nearly 750,000 participants since 2018, including genome sequences and Fitbit data. Despite 98% of participants consenting to share their electronic health records, over 300,000 have no EHR data in the database. The program is now testing an innovative approach — using clinical data-sharing networks to plug those gaps and expand the research dataset.
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A boundary-pushing federal health research program has secured thousands of electronic medical records as it aims to plug gaps in its data, through an innovative use of patient data-sharing networks primarily used to coordinate clinical care.
Since 2018, the All of Us program has collected health and wellness data on nearly 750,000 participants. The precision medicine research program, run by the National Institutes of Health, has collected genome sequences, Fitbit data, family history surveys, and real-world medical records that can span a patient’s entire health journey — all available for researchers to dig into.
But those real-world records often are missing big chunks of patient data. Even though 98% of All of Us participants agree to share their electronic health records for research, more than 300,000 have no EHR data at all in its database. In the program’s latest data release, announced on Tuesday, All of Us is attempting to fill in those holes — offering a potentially easier path to acquire real-world data for clinical research.
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This weekend, the United States will celebrate its 250th birthday, a momentous occasion that has been anticipated across the land going back to the beginning of the new year. The country is awash in patriotism in many ways, from city streets lined with red, white, and blue decorations to advertisements honoring the milestone, and even a new Larry David series revisiting famous moments from American history with cringe humor and petty grievances. None of this would have happened, though, without the actions of key Revolutionary War players who fought against tyranny and secured independence from Great Britain. Everyone knows General George Washington , the founding fathers, and Paul Revere , but a new graphic novel Kickstarter, courtesy of the creator of the original Prince of Persia video games, Jordan Mechner , from Oni Press and Magnetic Press, is shining a light on the unsung heroes of the war effort.
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