All of Us Program Leverages Patient Data-Sharing Networks to Enhance Real-World Data Collection

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 amassed 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.

However, those real-world records often lack significant patient data. Despite 98% of All of Us participants consenting to share their electronic health records for research, over 300,000 individuals have no EHR data in its database. In the program’s latest data release, announced on Tuesday, All of Us is attempting to fill these gaps, potentially providing a more streamlined approach to acquiring real-world data for clinical research.