Participate in the All of Us Research Program
The future of health begins with you. The All of Us Research Program has a simple mission. We want to speed up health research breakthroughs. To do this, we’re asking one million people to share health information. In the future, researchers can use this to conduct thousands of health studies. As a proud partner of the All of Us Research Program, from the National Institutes of Health, Gundersen Health System collects and provides health information from participants.
What is the All of Us Research Program?
All of Us is a research program from the National Institutes of Health (NIH). The goal is to help researchers understand more about why people get sick or stay healthy. People who join will share information about their health, habits, and what it’s like where they live. By looking for patterns in this information, researchers may learn more about what affects people’s health.
To get there, we need one million or more people. Participants are our partners. We’ll share information back with them over time. We expect the program to last at least 10 years.
How Does the All of Us Research Program Work?
Participants Share Data Online
Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood urine samples.
Data is Protected
Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.
Researchers Study Data
In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.
Participants Get Information
Participants will get information back about the data they provide, which may help them learn more about their health.
Researchers Share Discoveries
Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.
What’s Possible with the All of Us Research Program?
Researchers can use this data to better understand health and disease. This could:
- Identify risk factors for certain diseases.
- Join people with the right clinical studies.
- Figure out which treatments work for different types of people.
- Explore how technology can encourage people to take better care of their health.
Why Should I Join the All of Us Research Program?
If you join, you will be contributing to research that may improve health for everyone. Our goal is to understand why people get sick or stay healthy. Here are some examples of what researchers might be able to discover from their research:
- Better tests to see if people are sick or are at risk of getting sick.
- Better mobile apps to encourage healthy habits.
- Better medicine or information about how much of a medicine is right for each person.
Also, you will be able to see your All of Us Research Program information, which might be interesting to you. You may also learn about your health. If you choose, you will be able to share your All of Us information with your health care provider.
Accelerating All of Us With an Open-Source Software Model
All of Us has more potential to reduce suffering per dollar spent than any other public health initiative in history.
However, its progress is severely limited by not taking full advantage of the 7 million open source developers around the world (who would benefit from its success).
I’ve contributed as much data as I can to All of Us through their Fitbit connector and surveys. Currently, they don’t have integrations with any of my healthcare provider’s EHR systems.
I use an open-source app called Crowdsourcing Cures that collects and aggregates data on symptoms, diet, sleep, exercise, weather, medication, and anything else from dozens of life-tracking apps and devices. We have about a decade of high-frequency longitudinal data from over 10,000 users that would be very valuable to researchers.
However, since the All of Us platform appears to be closed-source, I can’t build a data-sharing integration. And there’s no public Application Programming Interface (API) that would allow me to send my data to All of Us either.
By creating a public API and enabling EHR systems and digital health apps to use the All of Us database for storage, the NIH could establish de-facto data format standards that would finally allow all digital health systems to talk to each other.
Additionally, by making the All of Us platform a global open source project, they could eliminate the waste of developer effort that’s currently being spent building the exact same feature for different companies or different national health systems. Instead, all those development hours could be spent improving the same code base.
Possible approaches:
- Open-Source software repository for the patient portal to allow developers to enhance data collection capabilities
- Open-Source software repository for the research platform to allow developers to enhance data analysis capabilities
- A public Application Programming Interface (API) to allow the All of Us database to serve as a global back end for digital health software
FAQ
Who is building the All of Us Patient Portal and Researcher Platform?
The Participant Technology Systems Center develops websites and mobile apps for the All of Us Research Program. These tools and platforms help participants enroll in the program, share their health information, and receive updates. The center also supports ongoing testing and upgrades to improve participants’ experience, implement innovative tools, and ensure the security of all participant-facing systems.
VIGNET, INC. has been awarded $102,576,382 to build them: https://reporter.nih.gov/project-details/10230444