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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