The All of Us Research Program: data quality, utility, and diversity

Abstract

Importance: The All of Us Research Program hypothesizes that accruing one million or more diverse participants engaged in a longitudinal research cohort will advance precision medicine and ultimately improve human health. Launched nationally in 2018, to date All of Us has recruited more than 345,000 participants. All of Us plans to open beta access to researchers in May 2020. Objective: To demonstrate the quality, utility, and diversity of the All of Us Research Programs initial data release and beta launch of the cloud-based analysis platform, the cloud-based Researcher Workbench. Evidence: We analyzed the initial All of Us data release, comprising surveys, physical measurements (PM), and electronic health record (EHR) data, to characterize All of Us participants including self-reported descriptors of diversity. Data depth, density, and quality were evaluated using medication sequencing analyses for depression and type 2 diabetes. Replication of known oncologic associations with smoking exposure ascertained by EHR and survey data and calculation of population-based atherosclerotic cardiovascular disease risk scores demonstrated the utility of data and platform capability. Findings: The beta launch of the All of Us Researcher Workbench contains data on 224,143 participants. Seventy-seven percent of this cohort were identified as Underrepresented in Biomedical Research (UBR) including over forty-eight percent self-reporting non-White race. Medication usage patterns in common diseases depression and type 2 diabetes replicated prior findings previously reported in the literature and showed differences based on race. Oncologic associations with smoking were replicated and effect sizes compared for EHR and survey exposures finding general agreement. A cardiovascular disease score was calculated utilizing multiple data elements curated across sources. The cloud-based architecture built in the Researcher Workbench provided secure access and powerful computational resources at a low cost. All analyses have been made available for replication and reuse by registered researchers. Conclusions and Relevance: The All of Us Research Programs initial release of cohort data contains longitudinal and multidimensional data on diverse participants that replicate known associations. This dataset and the cloud-based Researcher Workbench advance the mission of All of Us to make data widely and securely available to researchers to improve human health and advance precision medicine.

Epidemiology of Atrial Fibrillation in theAll of UsResearch Program

“…The initial release of data and tools used in this work was published recently. 11 Results reported are in compliance with the All of Us Data and Statistics Dissemination Policy disallowing disclosure of group counts under 20.…”

“…Demonstration projects were designed to describe the cohort, replicate previous findings for data validation, and avoid novel discovery in line with the program value to ensure equal access by researchers to the data. 11 The work described here was proposed by Consortium members, reviewed and overseen by the program’s Science Committee, and was confirmed as meeting criteria for non-human subjects research by the All of Us Institutional Review Board. The initial release of data and tools used in this work was published recently.…”

Geographic Variation in Obesity at the State Level in the All of Us Research Program

“…Our analysis of deidentified data was classified as research not involving human subjects by the All of Us institutional review board. The initial release of data and tools used in our study was published recently ( 7 ). Results reported are in compliance with the All of Us Data and Statistics Dissemination Policy disallowing disclosure of results in group counts under 20.…”

“…Weight is recorded in kilograms to the nearest 0.1 kg. Clinical data on height, weight, and calculated body mass index (BMI) (weight in kg/height in m 2 ) that were collected and recorded in participant EHRs during in-person clinical visits for routine patient care were extracted and transformed into the Observational Medical Outcomes Partnership common format at each enrollment site ( 7 ). For our analysis, height and weight values from physical measurements visits and EHR data were used to calculate BMI from both data sources.…”

Offspring Study of Racial and Ethnic Disparities in Alzheimer’s Disease: Objectives and Design

“…Social work engagement enriches the participatory experience, leading to stronger community engagement and partnership. Ultimately, the effort improves recruitment and retention, maximizesMeasures Race and ethnicity Race and ethnicity are self-identified, using methods identical to the according to the Precision Medicine Initiative All of Us Research Program (PMI-AURP; Precision Medicine InitiativeWorking Group Report99 . Participants self-identify racial and ethnic categories that apply to them (i.e., American Indian or Alaskan Native, Asian, Black or African American or African, Hispanic/Latino or Spanish, Middle Eastern or North African, Native Hawaiian or other Pacific Islander, and White).…”