National Institutes of Health’s All of Us Research Program
Defining and Designing a Digital Ecosystem Supporting a Super-Sized Health Research Program
Background
The National Institutes of Health is the sponsor of the All of Us Research Program, a $600 million flagship precision medicine research program that was launched in America in 2018.
The aim of All of Us is to advance our understanding of health, and illness, across the complex tapestry of Americans living in every corner of the country, from the rolling farmlands to urban centers with a focus on understanding people historically underrepresented in health research. A large-scale and equitable health research database that can power scientific exploration and problem-solving that will power precision medicine tailored to people's specific needs is the program’s goal.
To meet that goal, the program is actively recruiting over one million American participants to share health information that can be used by approved health researchers on secure All of Us platforms.
Dates: 2016 - 2022
Partner comms agency: WONDROS
The ask
The All of Us operational model is a consortium of program partners across the United States who are awarded funds to support specific aspects of the project.
Media Betty’s Director of UX was requested by WONDROS, the program’s communication partner, to help direct UX research, strategy and design workstreams across a portfolio of research, strategy and design projects building, supporting and refining the program’s digital ecosystem as it went from start-up to scale-up.
Scope and scale: 20+ projects over a six year period across all levels including the program’s Senior Leadership Team
Key activities
Discovery, generative and ongoing UX research
UX vision and strategies for the digital ecosystem including ranked requirements
UX designs and content designs including UX specs and blueprints
Ecosystem modeling
Information architecture, content models and content inventories
Usage analytics analysis
User testing
UX evaluations
UX leadership across teams and projects
UX team and capabilities building
Stakeholder management and using research and design approaches that supported collaborative ways of working across HPOs, NIH teams, technology providers, research institutions and community engagement teams was a core part of this work.
Key projects and products
JoinAllofUs.org National Awareness, Engagement and Recruitment Websites (Beta, Alpha, Release 1, Release 2, Release 3, Ongoing Optimisations)
ResearchAllofUs.org Research Hub Website Product (Beta, Release 1, Release 2, Ongoing Optimisations)
All of Us National Launch Event Website
HPO Partner Microsite Design System
Ongoing UX evaluations across the ecosystem
HPO Learning Center Product - Performance and Data Visualisation Platform (UX Research, Beta, Release 1)
Researcher Experience: Research, Strategy and Roadmap Development
Outcome and Impacts
As of February 2025, just over 1.3 million Americans have registered with the program and almost 850,000 Americans have shared relevant health data, as the program nears its 'one million participants' milestone.
There are over 15,000 approved research projects using the programs data to explore health conditions.
The digital ecosystem strategy and design to support the program's recruitment outreach and engagement (national and regional) and to support researcher outreach and engagement continues to work hard and serves as a benchmarking for large-scale programs such as the UK's Our Health.
