From the All of Us CEO: Keeping Our Momentum Amidst Funding Uncertainties

April 23, 2024

As we approach the six-year anniversary of the All of Us Research Program’s national launch, I find myself reflecting on how far we’ve come in a few short years. Our program – once just a visionary idea – has become an integral part of the scientific enterprise, powering research around the world to advance personalized prevention, treatment, and care. 

As part of the National Institutes of Health, All of Us is publicly funded. Last month, Congress passed appropriation bills for the 2024 fiscal year, providing funding through September 30, 2024. Due to a drop in funding from the 21st Century Cures Act, All of Us received $357 million for this fiscal year, representing a decrease of $184 million (34%) compared to last year’s appropriation. This will mean a reduction in most program awards, which will result in several impacts: a decrease in the rate of new enrollments, a delay in the launch of pediatric enrollment, and a slowing of new data collection. 

While these are difficult choices, we will maintain momentum to build on the program’s many accomplishments to date:  

All of Us Participants and Their Contributions 

  • Over 790,000 people across the United States and its territories have joined the program to drive new discoveries. Even more impressive than the size of our participant community is its diversity: of the more than 540,000 volunteers who have completed the program’s initial steps, including sharing core data and samples for analysis, 87% are part of communities that were often left out of research in the past (including underrepresented racial and ethnic populations, LGBTQI+ communities, residents of rural areas and those with less access to care, individuals with disabilities, and other groups).
  • With their generous contributions, we are building a rich dataset spanning genomics, health history, lifestyle factors, and social determinants of health. The size and diversity of this dataset means that All of Us has growing power to investigate hundreds of diseases in diverse populations, paving the way for new insights that will benefit all. 

Our Research Community and Scientific Resources

  • Researchers have jumped at the opportunity to explore All of Us data. So far, more than 10,000 researchers from over 750 organizations have signed up for data access, an achievement that comes more than 2.5 years ahead of schedule. More than 85% of these researchers are from groups that are historically underrepresented in the biomedical workforce, providing further testament to the program's reach. 
  • Our Researcher Workbench platform and data access model enable collaborations across institutional boundaries, and achieve real efficiencies borne out by the numbers. If each registered institution were to store the amount of data that All of Us has gathered, costs would exceed $1 billion a year total. With our centralized, cloud-based infrastructure, the program’s total storage costs amount to $1 million a year, representing 99.9% savings. And the median time from initial researcher registration to data access is just 29 hours, compared to the months it typically takes researchers to gain data access through other programs. 

Our Impact on Health and Science 

  • Even with enrollment and data collection ongoing, All of Us is returning meaningful results to participants. More than 100,000 participants have received personalized health-related DNA reports from the program, with information about hereditary disease risk and how their bodies process certain medications. Through these reports, we have provided potentially life-saving information about genetic risk of cancers, heart disease, or other conditions to more than 2,000 participants already. 
  • Researchers have initiated more than 10,000 projects using All of Us data and published hundreds of papers in peer-reviewed journals – on cancer, diabetes, kidney health, heart disease, depression, glaucoma, COVID-19, alcohol and substance use, physical activity, and other topics. Just recently, we reported the discovery of 275 million previously unknown genetic variants from data shared by All of Us participants, a massive tranche that may offer new clues about genetic influences on health and disease.

All of Us still has much more to accomplish. Looking ahead, we are committed to launching pediatric enrollment as soon as possible, to deliver on our promise of making the program open to all age groups and supporting research across the lifespan. We aim to add data linkages to provide more comprehensive information about environmental factors, clinical care, and more. And we see tremendous opportunities to forge new partnerships through additional studies built on top of our core protocol, like the Nutrition for Precision Health study supported by the NIH Common Fund. In this way, the All of Us infrastructure can be leveraged by partners for novel research, while they help expand our dataset for the broader scientific community.

While our budget circumstances are causing us to make adjustments to our immediate plans, our commitment to our participants and the protection of their data remains unwavering, and our motivation to continue advancing precision medicine and health equity is stronger than ever. 

Future drops in Cures funding will be even more significant in FY2025 and FY2026, after which that stream of funding is set to expire. The President’s FY2025 budget request is $541 million for the program, which includes planned Cures funding. 

We are extremely grateful for the long-standing support we’ve received from participants, researchers, partners, and Congress to build such a strong foundation. We will continue working diligently to realize the vision established at the program’s inception: to drive discoveries that lead to better health for all of us.