All of Us Research Program: One year after launch, momentum is key
Dara Richardson-Heron, MD
The All of Us Research Program is an ambitious and unprecedented initiative with a long-term goal of enrolling 1 million or more participants who will share information about their family health histories, lifestyles, and personal medical histories. The program aims to advance precision medicine, an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle.
In the program’s first year, more than 200,000 individuals from all walks of life enrolled, making it one of the largest and most diverse research cohorts in the nation. Of the volunteers who have completed the initial steps of participation, more than 80 percent come from communities that are underrepresented in biomedical research, and 50 percent are from racial and ethnic minority backgrounds.
Dara Richardson-Heron, MD, All of Us Research Program chief engagement officer and scientific executive, has been involved since the beginning as an inaugural member of the All of Us Research Program advisory panel. She shared key updates and next steps for All of Us with the National Rural Health Association.
Q: What is the timeline for the All of Us Research Program?
In 2015, the Precision Medicine Initiative was first announced, of which All of Us is a component. The National Institutes of Health (NIH) set up a committee to gather public input and develop a blueprint for the program.
In 2016, NIH began building out the program’s infrastructure and protocol, engaging and partnering directly with individuals, communities, and trusted organizations across the nation. This partnership helped us develop the optimal strategies and infrastructure to increase awareness and interest in our program, with a particular focus on those who have been historically underrepresented in health research.
In 2017, All of Us began beta testing. During this time, some individuals were able to enroll, and we honed our messaging, developed resources and prepared for the national launch that occurred in May 2018.
Over the past year, we have launched a second All of Us Journey unit, a mobile display that travels the country to raise awareness and enroll participants. We have begun a new speaker series to engage our participants online. We have continued to collaborate with our invaluable community partners across the nation, such as NRHA, who have helped us continue to enhance our approach by serving as trusted messengers within diverse communities across the country. We have also expanded data collection through a partnership with Fitbit so that participants can contribute data through their wearable device.
Now we’re continuing our efforts to raise awareness about the program while also maintaining engagement with those who have already enrolled. We’re also adding new features to the program so we can continue to sustain the effort for at least the next 10 years.
Q: Are the program goals still the same one year into the program?
Yes, our broader goals are the same as they were at the inception of the program. First and foremost, we aim to create a rich data resource that researchers of all kinds can access to accelerate medical breakthroughs and advance precision medicine. In order to ensure these medical advances benefit us all, we’ve known from the outset that it’s crucial to involve people who have historically been left out of research, including individuals living in rural communities.
We’re now looking to expand the existing program. In addition to our work to raise awareness for people to enroll, we’re also developing a long-term engagement strategy to sustain our relationships with volunteers so we can ensure their active participation for the duration of the program.
Q: Can you share some of the ups, downs, and learning experiences of the first year of the program?
We always knew that launching and implementing a program as far-reaching and ambitious as All of Us wouldn’t be easy. There’s no road map for how exactly to enroll 1 million or more diverse individuals and maintain engagement with them for at least 10 years.
In that regard, we are learning all the time:
- What is the best way to create value for participants?
- How can we most clearly communicate our goals?
- What information will researchers find most valuable?
Questions like these come up every single day. We place a heavy emphasis on flexibility. Every day we’re learning new things and tailoring our course of action in order to accommodate the different needs of participants, community leaders, researchers, and others.
One thing that makes All of Us different is that we want participants to be included in the program as true partners. This means we must be open to change so that we can respond and adjust based on the feedback we receive from participants and our community partners.
Q: How does All of Us help further the goals of the Precision Medicine Initiative?
The All of Us Research Program, through its commitment to developing a research cohort reflective of the United States’ true diversity, is critical to the overall success of the initiative. It will provide a better picture of how and why different diseases or conditions impact individuals and communities.
Ultimately the Precision Medicine Initiative exists to make sure the U.S. health care system is able to deliver the right treatment at the right time to the right person. The health information that participants share may help researchers identify the best treatment options and prevention strategies for different diseases based on specific individual differences rather than a one-size-fits-all approach.
Q: What are your next steps with All of Us?
This May, as we hit the one-year mark since our national launch, we released a beta version of the All of Us Data Browser at databrowser.researchallofus.org, which gives researchers from professionals to citizen scientists access to a rich repository of aggregate health data. Eventually the resource will expand to the Researcher Workbench, allowing researchers of all kinds to conduct new and exciting studies that we hope will lead to accelerated medical breakthroughs for all. We expect this platform will be available later this winter.
We also have many exciting projects and initiatives that we’re working on and expect to put into action in the coming months. We plan to add surveys about mood and mental health for participants to complete and will begin returning genomic results to participants. We’re also excited to continue translating information about the program into additional languages.
We encourage everyone, including rural Americans, to consider participating in All of Us. Learn more at JoinAllofUs.org/together.
Q: Why is it important to keep the momentum going?
The work has really only just begun. Part of what will make this research so valuable is that it will gather data over a long period of time, giving us a more complete picture of health. Longitudinal data is so important to researchers because it allows you to see changes that occur over time. As participants move, experience different health needs, and age, we can follow their experiences to learn more about the full life cycle. In order to do that, we need to continue to engage our participants to ensure the momentum continues.
We continue to raise awareness, provide new value to existing participants, and expand our reach to additional regions of the country to help sustain the excitement and participation.
Q: Is there anything else you would like to share with NRHA members?
As you well know, rural Americans face significant health disparities. For instance, rural Americans are 40 percent more likely to experience coronary heart disease and nearly 9 percent more likely to have diabetes than those living in urban areas. While some of these inequalities have to do with access to quality care, we also know that rural communities are significantly underrepresented in medical research. Without adequate data and knowledge of a specific community, we can’t develop precise treatment and prevention strategies for those individuals.
There are more than 46 million Americans living in rural communities — we can’t turn a blind eye to these discrepancies in health outcomes. That’s why participation is so important. We encourage everyone, including rural Americans, to consider participating in All of Us. You can find additional information about how to join at JoinAllofUs.org/together. Together, we can take important steps toward eliminating health disparities for generations to come.