JAMIA Highlights All of Us Research Program’s Efforts to Return Value to Communities

The National Institutes of Health’s All of Us Research Program is highlighted in a special issue of the Journal of the American Medical Informatics Association (JAMIA) this December, showcasing the program’s unprecedented commitment to return value to research participants. The issue covers key research about the program’s work in partnership with participants and communities, including efforts to develop access models and methods, support community engagement, build capacity and research competency, and advance health equity. 

The All of Us Research Program is a precision medicine effort looking to enroll 1 million people who reflect the diversity of the United States to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us. 

“Since the inception of All of Us, we have been committed to being a catalyst for positive change in medical research, ensuring participants are partners and that All of Us data is broadly accessible for research. We are grateful to the participants and communities who make All of Us possible,” said Josh Denny, MD, MS, chief executive officer of the All of Us Research Program at NIH. “I’m thrilled that the informatics community took up this call to advance the return of value to communities.”

The issue’s accompanying editorial characterizes the 36 papers, authored by community researchers, program partners, and academic scientists, that comprise the focus issue, including a special focus on five key publications. Additionally, a perspective by Mapes, et al., highlights the use of informatics in the All of Us Research Program and how this work supports return of value to the community.

●      Model-based estimation of individual-level social determinants of health (SDOH) and its applications in All of Us. Researchers with New York University outline their methods for studying the relationship between SDOH and health outcomes using All of Us data to help inform targeted and equitable health care strategies in the future.

●      A model for supporting biomedical and public health researcher use of publicly available All of Us data at Historically Black Colleges and Universities. A research team from RTI International describes their model for building learning networks to support communities of researchers using All of Us data at Historically Black Colleges and Universities. The study describes the multi-level structures to support students, faculty, and a broader community in productively using the data to advance research. 

●      Socioeconomic disparities in kidney transplant access for patients with end-stage kidney disease within the All of Us Research Program. Researchers with the University of California, Irvine identified systematic inequities affecting participants with end-stage kidney disease and their odds of receiving a kidney transplant. 

●      Pregnancy episodes in All of Us: harnessing multi-source data for pregnancy-related research. A team from Northeastern University examined the demographics and pregnancy outcomes of All of Us participants, highlighting the usefulness of the All of Us dataset to advance research on pregnancy.

●      Disparities in ABO blood type determination across diverse ancestries: a systematic review and validation in the All of Us Research Program. Researchers with the University of Arizona challenged the use of tag single-nucleotide polymorphisms (tSNPs) used to determine ABO blood types, finding that it may promote inaccurate inference and potentially exacerbate disparities in genomic research for underrepresented populations. 

“This issue highlights the All of Us Research Program’s foundational efforts to return value to participants, communities, and the scientific ecosystem. This core value of the program has underpinned its innovative infrastructure, depth and breadth of data, and access model, which will help further knowledge of health and disease for years to come,” said Suzanne Bakken. PhD, RN, editor-in-chief of JAMIA and executive director of the Center for Community-Engaged Health Informatics and Data Science at Columbia University.

The All of Us Research Program makes data available through its secure cloud-based platform, the Researcher Workbench. Currently, more than 14,000 registered researchers from over 1,000 organizations access data from 413,000 participants. More than 849,000 participants have enrolled in the program to date.