All of Us Research Workbench Open for User Feedback

The National Institutes of Health recently opened its data platform for user feedback of its “All of Us Researcher Workbench.”  Researchers are now able to use the initial datasets obtained from nearly 350,000 participants in the All of Us research program and the tools in the All of Us studies.

Initially branded as the “Precision Medicine Initiative®” Cohort Program, “All of Us” will be the largest volunteer health and medical research program on precision medicine in the United States. As part of this health initiative, “All of Us is building a diverse database that can inform thousands of studies on a variety of health conditions.” The All of Us program is working towards:

The NIH also announced that they have adopted a “data passport” model to make the data accessible.  After several preliminary steps (registration, agreeing to certain rules, and program training) users will have access to use the All of Us data for a wide range of studies.

The current program suffers from certain limitations. As explained by the NIH, “[b]ecause participants take part in the program at different paces and we are still enrolling, we don’t have variables for all participants; in particular, survey completion rates vary, and the collection and harmonization of electronic health record data remain a work in progress. We have done some preliminary testing on biological plausibility of the data; other curation efforts are still underway.” In addition, some of the data has been “blurred” to protect patient privacy and users must analyze data within the secure cloud-based All of Us platform.

Despite its limitations, this is a promising next step in realizing the goal of studying and analyzing data from one million or more people living in the United States to the end of better health for all of us.

© 2024 Foley & Lardner LLP
National Law Review, Volumess X, Number 189