The All of Us Research Program envisions the use of its data and specimen resources for the acceleration of health research and maximization of the benefits emerging from participant contributions. In addition, the program strives to be transparent about how its resources are shared, the research being conducted with them, and the results of this research. Lastly, All of Us participants are partners in research, and it is important that they are acknowledged for their contributions to research advances.
Each of these goals can be accomplished in part when researchers using All of Us data and specimens (“users”) disseminate the results of their analyses in accordance with this policy.
Rule and Analysis
The All of Us Research Program takes seriously its core values and its responsibility to its research participants, thus valuing high levels of transparency and recognition of participants as partners. All of Us’ position as a government-funded program with unprecedented diversity of participants makes it even more important that the results of research emerging from its data and biospecimens are made widely and rapidly accessible.
To further this goal, the program requires that its users submit final versions of any peer-reviewed manuscripts to PubMed Central (PMC), a free archive of biomedical and life sciences literature hosted by the National Institute of Health’s National Library of Medicine, to be made publicly available immediately upon publication without an embargo period. Allowing rapid and broad access to peer-reviewed literature can accelerate biomedical research and is an important way that All of Us can increase transparency to its participants and the public. Moreover, having publications available in PMC can also improve the accessibility of research for academic scientists in lower resource settings; non-traditional scientists (e.g. community and citizen scientists); and students at schools, colleges, and universities that may not invest or may not have the resources to buy subscriptions to scientific journals (https://f1000research.com/articles/5-632/v3).
All of Us also seeks to ensure that the program is informed of upcoming presentations and publications, including those disseminated through peer-reviewed manuscripts and through informal means of dissemination (e.g. blog posts), to track findings emerging from All of Us resources and to prepare for any media coverage.
Finally, it’s important that participants are always acknowledged in the dissemination of results from analyses of All of Us resources. This program could not exist without its participant partners, and any findings resulting from the program’s resources are in no small part thanks to their contributions.
Under this policy, Researcher Workbench users are obligated to inform the program of any upcoming publications or presentations resulting from the use of All of Us Research Program data (including peer-reviewed manuscripts or conference abstracts) at least two weeks before the date of publication or presentation. Users can do this through User Support in the Researcher Workbench. Manuscripts will not go through any program review. The information will only be used for the program to prepare for any media coverage or communication regarding the upcoming publication. Any embargoes will be honored.
Additionally, users must submit an electronic version of a final, peer-reviewed manuscript to PubMed Central immediately upon acceptance for publication, to be made publicly available immediately without any embargo period once published.
Lastly, Researcher Workbench users must also honor the contribution of those who take part in All of Us to the research project’s work. This includes in all oral and written presentations, disclosures, and publications resulting from any analyses of the data. Users should also acknowledge the program. The following is an example of an acknowledgement statement:
“The All of Us Research Program is supported by the National Institutes of Health, Office of the Director: Regional Medical Centers: 1 OT2 OD026549; 1 OT2 OD026554; 1 OT2 OD026557; 1 OT2 OD026556; 1 OT2 OD026550; 1 OT2 OD 026552; 1 OT2 OD026553; 1 OT2 OD026548; 1 OT2 OD026551; 1 OT2 OD026555; IAA #: AOD 16037; Federally Qualified Health Centers: HHSN 263201600085U; Data and Research Center: 5 U2C OD023196; Biobank: 1 U24 OD023121; The Participant Center: U24 OD023176; Participant Technology Systems Center: 1 U24 OD023163; Communications and Engagement: 3 OT2 OD023205; 3 OT2 OD023206; and Community Partners: 1 OT2 OD025277; 3 OT2 OD025315; 1 OT2 OD025337; 1 OT2 OD025276. In addition, the All of Us Research Program would not be possible without the partnership of its participants.”
NOTE: When preparing to publish, users must also remember to abide by the Data and Statistics Dissemination Policy. For more information, visit the Data Access and Use page.