Speaker
Joshua C. Denny, MD, MS
CEO, All of Us Research Program
Keywords
Precision Medicine, All of Us Research Program
Key Points
- The mission of the All of Us Research Program is to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us. The program will nurture partnerships for decades with at least a million participants who reflect the diversity of the U.S.; deliver one of the largest, richest biomedical datasets that is broadly available and secure; and catalyze an ecosystem of communities, researchers, and funders who make All of Us an indispensable part of research.
- Participation in All of Us is open to all and reflects the rich diversity of the U.S. Participants are partners, and trust will be earned through transparency. Participants have access to their information, data will be access broadly for research purposes, and security and privacy will be of highest importance. The program will be a catalyst for positive change in research.
- All of Us started in 2016 by asking communities what is important to them. The program held 77 listening studios in 17 cities with 654 community members. More than 631,000 participants have enrolled in All of Us with continued growth. More than 80% of All of Us participants are underrepresented in biomedical research.
- Returning value is a key part of the program. Participants shared that genetic information is a type of information they want to get back. All of Us also provides back survey data, EHR and claims data, ongoing study updates, aggregate results, scientific findings, and opportunities to be contacted for other research opportunities.
- All of Us has a philosophy to get data to researchers quickly. The Research Workbench data browser is available with no log in and you get aggregate results. The Researcher Workbench is a cloud-based central resource with a passport access model. It is currently open to U.S. nonprofits and nonprofit/for-profit academic and healthcare organizations.
- By the end of 2026, the goal is to reach 1 million participants who reflect the diversity of the U.S., cover the lifespan, and have shared all baseline elements. Of these participants, 500,000 participate in ongoing data donation opportunities. All of Us will expand the data available for participants, launch ancillary studies as a core and scalable capability, establish a diverse global community of 10,000 researchers, and incorporate participant return of value into data collections and assess its impact.
- All of Us is currently working on developing a pediatric population and will soon be launching 2 modules looking at mental health and well-being.
Discussion Themes
-From a researcher perspective, how do researchers leverage All of Us and how should the costs be included in grants and funding opportunities? New researchers get $300 of free credits which will handle a lot of EHR access. At the NIH we are recognizing that we want this to be part of people’s grants. We are a platform, so we do not have awards open that support science. Those funds would come from NIH.
–How can one use this for prospective studies? We are thinking about this as the future of these studies. We are not at the capability yet where we can open this up. We want to make sure that we are not an off ramp for clinical trials. We want trials to adhere to our core values and have the data come back to our ecosystem. We are looking forward to supporting more.
Tags
#pctGR, @Collaboratory1