All of Us Research Program Seeks Input on Future Expansion of Dataset

June 3, 2024
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The All of Us Research Program is seeking input on new data streams to link within the Researcher Workbench. Responses to the Request for Information are due by June 28, 2024.

Request for Information will inform new data linkages to accelerate health insights

The National Institutes of Health’s All of Us Research Program is seeking input on new data streams to link within its Researcher Workbench. By linking additional types of data to the already-robust dataset, the program intends to help researchers examine diverse factors that influence health and advance tailored approaches to prevention, diagnosis, and treatment.

The Request for Information will inform the next phase of data linkages curated through the program’s Center for Linkage and Acquisition of Data (CLAD). Responses are requested by June 28, 2024.

“We are looking to add additional information that further captures the richness of participants’ lived experience in a way that wouldn’t be possible through traditional data collection methods alone,” said Lew Berman, Ph.D., M.S., branch chief of All of Us’ Digital Health Technologies and Data Branch. “Our goal is to create one of the most diverse and comprehensive datasets available that enables a deeper understanding of the drivers of health and disease, to ultimately help improve the health of individuals and communities.”

The program’s Researcher Workbench currently includes information actively contributed by participants – data from biosamples, surveys, wearable devices, physical measurements, and electronic health records (EHRs) – with safeguards in place to protect privacy. CLAD is working to supplement these data types, pulling from existing datasets and sources without requiring additional action by participants beyond their initial consent. CLAD will then securely deliver this information to the All of Us Data and Research Center and make it accessible to registered researchers through the Researcher Workbench. So far, more than 11,000 researchers have registered for access to All of Us data and initiated thousands of studies on a wide range of diseases and conditions.

The initial CLAD linkages are connecting participant data to existing datasets on mortality, residential history, environmental information, and health care claims data. The program expects data from these linkages will be available for researchers to use in late 2025. All of Us will use the Request for Information process to evaluate additional data streams to potentially integrate, pending the availability of funds. Suggested linkages will be evaluated based on how they may expand the understanding of participants’ health; increase research utility of the overall dataset; align data collection with the expectations of consented participants; provide access to high-quality data; and add value to participants’ experience to increase retention.

“The CLAD process modernizes data collection to increase efficiency and reduce the burden on participants, while also improving the scientific utility of the dataset,” said Berman. “We are eager for feedback from the research community and the broader public to help guide future directions for this important work.”

CLAD is led by the University of North Carolina at Chapel Hill in collaboration with a team of partners around the country from academic, data, security, and software organizations.

To learn more, please view the Request for Information.

Last Reviewed: June 3, 2024