ANAC is an engagement partner in the All of Us research program, a national longitudinal observational cohort of more than 1 million people in the United States. The program is supported and overseen by the National Institutes of Health (NIH), Office of the Director and is an NIH-wide initiative, with various NIH Institutes, Centers, and offices participating, including the National Institute of Nursing Research. As a national engagement partner, part of our role is to share knowledge and opportunities with nurse researchers about the program, including opportunities for accessing the expansive cloud-based database. We encourage experienced and emerging nursing, public health, and related health professions researchers to consider the rich All of Us data sets as a resource.
Diversity is a core value of the All of Us research program.
All of Us is building a diverse database that is informing thousands of studies on a variety of health conditions. The database is one of the largest biomedical data resources of its kind, with health data from a diverse group of participants from across the United States. As of March 6, 2023, more than 608,000 participants have consented to join the program and have begun to participate in initial data collection, including agreeing to share electronic health records (EHRs). Of those, more than 422,000 have also completed the first three surveys, provided physical measurements, and have donated at least one stored biospecimen. Intentional inclusion of diverse individuals includes outreach to racial and ethnic minorities as well as sexual and gender minorities, people of various ages, those with low income or limited education, people from rural and underserved areas, and those with chronic diseases and disabilities and other groups. About 50% of participants are racial and ethnic minorities, and about 80% of the data are contributed by participants who represent communities that are historically underrepresented in research.
The Research Hub
All of Us has tiered levels of access to participant data with strict data use policies, curated and organized on the Research Hub, the on-line site that houses the large, diverse, and growing All of Us database.
The Public Tier dataset contains only aggregate data with identifiers removed. These data are available to everyone through Data Snapshots and the Data Browser, an interactive tool on the Research Hub. Data Snapshots are aggregated, public-facing data points that provide an overview of All of Us Research Program participant characteristics and the types of data collected. The Data Browser provides interactive views of All of Us aggregate data and includes EHR data, genomic data derived from biosamples, physical measurements taken at the time of participant enrollment, and data from survey responses from participants on an ongoing basis. Participants respond to surveys spanning a variety of topics. The program has tested each survey for readability and accessibility using cognitive interviews and quantitative testing, and they are available to participants in both English & Spanish. Surveys include basic demographic information, lifestyle information including substance use, overall health information, personal medical history, health care access and utilization, family health, social determinants of health, and information about the impact of COVID-19 on participant's mental and physical health and participant's COVID-19 vaccination experiences. Researchers can use the Data Browser to explore the data available and determine whether the program's resources can be useful to their work.
The Researcher Workbench and Restricted Tiers
The Researcher Workbench is a cloud-based platform where registered researchers can access Registered and Controlled Tier data. The Registered Tier curated dataset contains individual-level data, available only to approved researchers on the Researcher Workbench. Registered users can dive deeper into the data, conduct rapid, hypothesis-driven research, and build new methods for the future, using a variety of tools. In addition to the data in the Registered Tier, the Controlled Tier dataset contains genomic data from nearly 100,000 whole genome sequences, and more than 165,000 genotyping arrays are integrated alongside data from surveys, physical measurements, EHRs, and other data. Within the Researcher Workbench, the Dataset Builder allows researchers to search and save collections of health information. The Cohort Builder is a custom, point-and-click tool that allows researchers to create, review, and annotate groups of participant data, or cohorts, within the All of Us dataset.
We invite you to explore the All of Us Research Projects Directory, with information about all projects that currently exist in the Researcher Workbench. As of March 7, 2023, there were more than 4,000 active research projects. Access to the All of Us Researcher Workbench is available to registered researchers with an institutional agreement in place. Currently, any U.S.-based academic, nonprofit, or health care institutions can enter into a Data Use and Registration Agreement. ANAC has an institutional Data Use agreement in place, and ANAC members may use their home institution or the ANAC usage agreement. For more information, visit https://www.researchallofus.org or contact ANAC staff at mailto:[email protected].
Disclosures
The author report no financial interests or potential conflicts of interest.