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The All of Us Research Program Journey

Jun 03, 2024 | Gelilawit Tamrat, Irene Halferty

Introduction

The National Institutes of Health formed the Precision Medicine Initiative Working Group of the Advisory Committee to the Director in March 2015. The group concluded its work in September 2015 with a detailed report that laid the framework for the All of Us Research Program, with the vision of developing individualized health care for a population as diverse as that of the United States.​ ¹

Since its inception, the All of Us Research Program has been guided by its core values and an ambitious mission​: to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us. The program has charted six strategic goals to help achieve its overarching mission:

  1. Enroll one million or more participants who reflect the diversity of the United States, cover the lifespan, and have shared all baseline elements. Of these, at least 500,000 participate in ongoing data donation opportunities.
  2. Explore the data available for one million participants, to include surveys, health data streams, a whole genome sequence, environmental data, and physical measures.
  3. Launch ancillary studies as a core and scalable capability that expands the cohort and delivers new phenotypic, lifestyle, environmental, and biological data.
  4. Establish a diverse global community of at least 10,000 researchers productively using All of Us data.
  5. Incorporate participant return of value into data collections and assess its impact, including return of information to participants on genomic, electronic health record, and other health-related information.
  6. Enable the full potential of the All of Us Research Program through organizational accountability, strategic and data-driven decision-making, effective core processes, and team capacity and development​.²

Research that Reflects Our Nation’s Diversity

A core value of the All of Us Research Program is diversity. The differences in our lived experiences, environment, and genetic background can all play a role in our health, but those differences are not understood equally. Many groups of people have been historically excluded or underrepresented in medical research, meaning researchers know less about their health and what can impact it. By studying data from a diverse group of people, the program hopes that researchers can identify better treatment and disease prevention strategies for all of us, including building better tools for detecting a health condition and encouraging healthy habits.

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What Participation Entails

All eligible people living anywhere in the United States can join the All of Us Research Program. Signing up for the program is made easily accessible through the program’s website, partner Health care Provider Organizations (HPOs), and the Direct Volunteer Network (DV). Participants can sign up directly through Join All of Us or find a participating health care provider organization here.

Participation in the program will always be free. People who take part in the program will answer surveys on different topics such as lifestyle, personal and family history, access & utilization of healthcare, and social determinants of health. They will be asked to link their electronic health record and will have the option to give samples of blood, urine, and/or saliva for lab and DNA tests. The health information is de-identified and entered into a secure database, where it will be available to registered researchers to inform their work on many different health conditions.

Nationwide Outreach

As part of the program’s effort to invite participation from diverse populations across the United States, the All of Us Research Program has a traveling educational exhibit: the All of Us Journey. This mobile engagement asset (MEA) brings the mission of the program directly to communities across the nation by traveling to different cities and collaborating with organizations to hold events and educate community members about the program. The Journey also offers individuals the opportunity to enroll in the program on-site and become active participants in shaping the future of healthcare. As part of its engagement and education efforts, the Journey features interactive activities, videos, games, quizzes, and more – all designed to demonstrate the power of individuals’ participation in health research. During its 2024 cycle, the Journey will be collaborating with many organizations and visiting cities across the country. To view the Journey’s schedule, please visit their website here.

Collaborate with the All of Us Journey

To reach its goal, the All of Us Research Program is partnering with leading institutions, organizations, community partners, and participant representatives across the country.

Organizations like local health departments play a pivotal role by hosting, promoting, and tabling at the All of Us Journey events, serving as catalysts for community engagement and public health advocacy. By partnering with the program, organizations can amplify their impact and contribute to the advancement of medical science while fostering connections with the communities they serve.

Hosting and promoting the All of Us Journey offers organizations a unique opportunity to:

  1. Foster Community Engagement: The Journey serves as a platform for organizations to engage with community members in meaningful conversations about health and research. By providing a welcoming space for dialogue and education, organizations can empower individuals to become advocates for their own health and well-being.
  2. Promote Health Equity: The All of Us Research Program is committed to ensuring that its participant cohort reflects the rich diversity of the United States. By hosting the Journey, organizations can help bridge gaps in health disparities by reaching out to underrepresented communities and encouraging participation from individuals from all backgrounds.
  3. Support Research and Innovation: The data collected through the All of Us Research Program has the potential to fuel groundbreaking discoveries in public health and medicine. By hosting the Journey, organizations play a vital role in facilitating research that can lead to new insights, treatments, and interventions to improve health outcomes for everyone.
  4. Strengthen Partnerships: Hosting the All of Us Journey fosters collaboration between organizations, the program, and local communities. By working together towards a common goal of advancing public health and scientific research, partners can leverage their collective expertise and resources to create lasting impact. You can learn more about upcoming opportunities for your organization to collaborate with the All of Us Journey ​here.
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Conclusion

Want to support the All of Us Research Program’s mission for a healthier tomorrow? The All of Us Journey is currently looking to collaborate with local health departments to host the Journey, to table at a Journey health event to disseminate community resources (e.g., vaccine drives, mammogram opportunities), or promote the Journey events within their community. Your organization can collaborate with the All of Us Journey by filling out this form. By encouraging participation in the All of Us Research Program, you can help create a healthier future – for all of us!

If you have any questions about this program, please contact [email protected].

References

  1. https://allofus.nih.gov/about/program-overview
  2. https://allofus.nih.gov/about/program-goals

About Gelilawit Tamrat

More posts by Gelilawit Tamrat

About Irene Halferty

More posts by Irene Halferty

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