Tracking the Impact of the All of Us Research Program: The All of Us Reports and Publications DatabasePosted on by
The All of Us Reports and Publications Database (AofURPD) is a continuously updated, searchable database referencing and linking to peer reviewed journal publications, preprint records, as well as select information from websites and media sources that relate to the All of Us Research Program. This blog provides a baseline overview of the content of the AofURPD as of March 17, 2023, including reports and publications as far back as the All of Us Research Program inception in 2016.
The All of Us Research Program aims to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment and care by 1) nurturing relationships with one million or more diverse participant partners and engaging with communities who have historically been left out of medical research, 2) by delivering the largest richest biomedical dataset that combines biological factors and social determinants, and 3) catalyzing a robust ecosystem of researchers and funders by providing easy access to data through secure internet connection and data use agreement.
In 2018, the public portion of the All of Us Research Hub, the Data Browser, was launched and allows users to view aggregate data. Since then, the All of Us Research Program has implemented the Registered and Controlled tiers of the Research Hub. Registered users can use the Researcher Workbench to dive deeper into the data; conduct rapid, hypothesis-driven research; and build new methods for the future, using a variety of tools. Researchers from U.S.-based academic, nonprofit, or health care organizations can apply for access to de-identified, individual-level participant data.
There are currently more than 300 reports and publications highlighted in the AofURPD. The AofURPD can be filtered through multiple curation features. The reports and publication within AofURPD are cross-referenced with other specialized datasets within the Public Health Genomics and Precision Health Knowledge Base (PHGKB). Filtering within these specialized datasets for studies using All of Us participant data, there are currently reports focusing on Health Equity (n=36), Heart, Lung, Blood and Sleep Disorders (n=36), Diabetes (n=17), Infectious Disease (n=17), Cancer (n=14), Rare Disease (n=14), and additional studies in other focal areas. The reports and publications can also be filtered for either genomic or non-genomic content (see Table).
Once a term is entered into the search window of the AofURPD, results from the All of Us participant data can be found by filtering for ’Publication Category’ and selecting ‘Making use of All of Us data’ (n=128). Of these, 126 reflect ‘original research’ using All of Us participant data, one publication categorized as ‘evidence synthesis’ reports on meta-analyzed data from both the All of Us Research Program and the UK Biobank, a biomedical database containing in-depth genetic and health information from half a million UK participants. Another item is a link to a Webinar which provides an overview of the participant data content within the All of Us Research Program, categorized as ‘review/commentaries’.
Of the 128 original research publications using All of Us participant data, only 18 include genomics data to date (5 publications in 2022, and 12 published already in 2023, and one prelaunch study in 2021 of the four participating clinical laboratories). This underrepresentation of genomics is reflecting a later release date of March 17, 2022 of the genomics data. It is expected that the number of studies using participant data for genomics-related studies will rise dramatically from here on out.
Non-genomics precision health original research using All of Us participant data has progressed from one research publication in 2020 to 15 publications in 2021, and 64 publications in 2022, and 29 publications using All of Us participant data already entered in 2023. Overall, the non-genomic studies represent a variety of disease/condition association studies and prevalence studies, with reference to health equity and healthcare access/utilization included in many (n=34)
The AofURPD also tracks items published by members of the All of Us Research Program not specifically utilizing participant data (n=40). Many of these reports and publications discuss implementation and strategies around community engagement, data storage, privacy issues and other program efforts. Further, the AofURPD includes reports and publications that simply mention the program (n=150).
These are the early days of the All of Us Research Program. The AofURPD will continue to grow as more researchers use data available through this rich biomedical dataset. Researchers interested in using the All of Us Research Program dataset can identify collaborators and focus their research interests by reviewing existing reports and publications in AofURPD. Reports and publications will be spotlighted on a regular basis. Future plans exist to link publications with research projects listed in the Research Projects Directory, offering an opportunity to collaborate with and/or complement fellow researchers.
|2021 Genomics||2021 Non-Genomics||2022 Genomics||2022 Non-Genomics||2023 Genomics||2023 Non-Genomics|
|Family Health History||1||1||2|
|Heart, Lung, Blood and Sleep Disorders||6||2||14||4||10|
|Infectious Disease(COVID-19)**||1 (1)||12 (9)||4 (2)|
|Reproductive and Child Health||2||4|