Commercial organizations are now eligible to apply for access to the Researcher Workbench
The National Institutes of Health’s All of Us Research Program is now taking requests from commercial organizations and their researchers to register for data access through its Researcher Workbench. The update will help to accelerate discoveries advancing individualized prevention, treatment, and care for people in the United States and beyond.
The program’s vision for broad data access is guided by All of Us’ core values and outlined in the program’s consent materials. Since first making participant data available for research in 2020, the program has scaled access eligibility over time to increase the use of participant data, which now powers thousands of research projects. This gradual approach to opening access allowed the program to gather early feedback to refine features of the cloud-based platform and to ensure optimal privacy and security protocols, prior to making it more broadly available. This update represents the latest step towards the program’s ultimate goal of supporting responsible, open science.
“Our participants joined All of Us to advance medical research to improve health for future generations. Commercial organizations are key partners in bringing discoveries out of the lab to reach people faster,” said Josh Denny, M.D., M.S., chief executive officer of All of Us. “By bringing more researchers from different backgrounds into the Researcher Workbench, we are building a pipeline for translational research with data that reflects the diversity of the U.S., so that future findings benefit all populations.”
Researchers with commercial organizations often partner with experts from other sectors, including academic, not-for-profit, and health care organizations, to advance studies. Commercial organizations have unique expertise, capabilities, and resources they add to these teams to turn scientific advances into new clinical technologies and treatments. Allowing direct access to the All of Us data will provide opportunities for richer collaboration and more robust studies.
All of Us has established and tested multiple safeguards to protect participants’ information and ensure responsible use by researchers. Many of these features are built into the design of the Researcher Workbench. For example, no direct identifiers, such as names and addresses, are shared with researchers, and other data in the dataset are modified to preserve participant privacy. Researchers can only access the data through the Researcher Workbench and are prohibited from downloading individual participant data. Additionally, a state-of-the-art encryption model protects data as it moves through the network. The program conducts several types of assessments on a regular basis to make sure its systems are as secure as possible.
Access to the Researcher Workbench is available only to registered researchers affiliated with an organization with a Data Use and Registration Agreement (DURA), a legal and binding contract that outlines organizational responsibilities, as well as permitted and prohibited uses of All of Us data. Researchers with these organizations must register for use by verifying their identity, signing a Data User Code of Conduct and completing required All of Us training on conducting research ethically and responsibly.
All of Us utilizes a data passport model that grants researchers access to one or more restricted data tiers. This model allows researchers to create workspaces in the tier they have access to without project pre-approval. However, for each of their workspaces, researchers must supply a project description – which the program makes available publicly in its searchable Research Projects Directory.
These descriptions also serve as an important resource for workspace reviews led by the program’s Resource Access Board (RAB). Anyone may request a review of a project through the directory. The RAB reviews workspaces upon request and as part of routine workspace audits. If the board finds that any researchers are not following the rules, the researcher and their organization could face penalties, like losing access to the data. The program could also take legal actions, if necessary.
“As a program, our most valuable asset is the trust we have built with our participants. That is why their privacy and the security of their data must be at the center of our work,” said Katherine Blizinsky, Ph.D., director of policy at All of Us. “We also embrace the idea that the more the data are used, and the more people that can use the data, the greater the potential it will have to benefit participants and society. We support responsible data use by a wide range of health researchers with diverse scientific interests. This diversity makes it more likely we will see findings that translate to greater equity and new solutions in health care.”
Already, more than 12,000 researchers worldwide use the Researcher Workbench, while participant enrollment and data collection are ongoing. More than 820,000 people so far have joined the program to contribute data for research. Participants provide data from biosamples, electronic health records, surveys, wearable devices, and physical measurements, and may have opportunities to share other kinds of data through ancillary studies with program partners. The program regularly expands and refreshes the dataset as more participants share information.
Learn more about the data available from All of Us and register for access at ResearchAllofUs.org.
