Report reviews past success and challenges, with recommendations for future sustainability
A working group of the National Institutes of Health's All of Us Research Program’s Advisory Panel has released a new report emphasizing the program’s successes and challenges in building a medical research platform that reflects the diversity of the U.S. The report also provides recommendations to ensure the sustainability of this national resource.
“The NIH now has a platform powering thousands of studies that are relevant to the broader U.S. population. It has the capability to scale and address the unique needs of our health care system. It also boasts a strong cohort of participants from diverse backgrounds – a feat to be applauded given the magnitude of this effort," said Russ Altman, Ph.D., All of Us Advisory Panel member and the chair of the working group. “It's critical that this program is funded for continued growth to meet its full potential. This will allow it to not only advance discoveries, but also save taxpayers considerable resources."
The Reflection and Advancement Working Group was led by All of Us Advisory Panel members, Russ Altman, M.D., Ph.D., Marylyn DeRiggi Ritchie, Ph.D., M.S., and Rhonda Robinson Beale, M.D. The group assessed the program’s achievements and challenges, areas for continued improvement, and opportunities for maximizing the program’s scientific impact and trajectory.
The report outlines several key insights and recommendations:
- The diversity of the program’s participants is unmatched, but will require continued engagement and transparent communications for ongoing success. Additionally, enrollment of participants, including children, from diverse backgrounds must continue alongside opportunities for enrolled participants to contribute data. The authors note that the dataset already shows tremendous power to study a number of diseases but it should continue to enroll up to its 1 million target of participants with genomics data to enable researchers to advance health equity through studies on key issues like women’s health, mental health, cancer, and other common and rare diseases.
- All of Us is becoming a national resource for translational research with findings that result in immediate clinical significance. The Researcher Workbench, the program’s platform for data analysis, should be maintained and enhanced for decades to come. Additionally, the program should look to build out its work in supporting ancillary studies to help enrich the dataset and deliver further value.
- Building on the program’s work during COVID-19, this resource should be engaged for responding to national health emergencies, and can be a part of multi-agency efforts to address current health challenges.
- The authors note that decisions about the program and its work should be guided by the long-term needs and sustainability of the resource, and that adequate and stable funding is required to meet these goals.
“The program has moved from its audacious vision to a program that’s making real impact already through inclusive research and precision medicine that benefits all,” said Josh Denny, M.D., M.S., chief executive officer for the All of Us Research Program. “I’m grateful for the working group’s recommendations, which will help set a path for the next chapter of the program and help accelerate translational research for decades to come.”
The working group’s report comes as the program faces a potential 71% reduction in funding from Fiscal Year 2023 to 2025 due to a drop in funding from the 21st Century Cures Act. However, All of Us plans to use the report to guide future directions, building on the program’s initial scientific blueprint and its more recent strategic goals. This planning aligns with the President’s Fiscal Year 2025 Budget that requests $541 million for the All of Us Research Program to restore the program to its Fiscal Year 22 and Fiscal Year 23 funding levels and provide the support necessary to maintain the growth and robust infrastructure of the program.
The full report is available on the All of Us website.
