The All of Us Research Program is a large research program. The goal is to help researchers understand more about why people get sick or stay healthy. The All of Us Research Program is part of the Precision Medicine Initiative®.
We hope that more than one million people will join the All of Us Research Program. 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.
The All of Us Research Program will last for 10 years or more. This will allow researchers to study health over time.
If you decide to join the All of Us Research Program, you will be contributing to an effort to improve the health of generations to come. You also may learn about your own health.
Privacy and All of Us
Founding director of All of Us Research Program, Dishman speaks to why having a cohort of a million or more people in the All of Us Research program is important to patients, health care providers, and medical research and innovation.
All of Us Core Values
• Participation is open to all.
• Participants reflect the rich diversity of the United States.
• Participants are partners.
• Trust will be earned through transparency.
• Participants have access to their information.
• Data will be accessed broadly for research purposes.
• Security and privacy will be of highest importance.
• The program will be a catalyst for positive change in research.
Who Runs the All of Us Research Program?
The National Institutes of Health (NIH) runs the All of Us Research Program. There are many groups helping NIH. There is a Data and Research Center that stores the information you contribute. There is a biobank that stores samples. There is a Participant Technology Systems Center that creates tools for you to connect with us online. There is a Participant Center and numerous health care organizations that are working with us to help you sign up. Learn more about our partners on our website:
In Arizona and Colorado the health provider organization (HPO) that runs the program is a partnership between University of Arizona and Banner Health. Additionally, we have partnered with Mariposa Community Health Center in Nogales. Together, we have fourteen clinic locations in Central and Southern Arizona and Northern Colorado.
Chief Executive Officer of the All of Us Research Program, Josh Denny, talks about steps All of Us takes to keep your information safe.
Your privacy is very important, and we will take great care to protect it if you join. Here are a few of the steps we will take:
- Information we collect will be stored on protected computers. We will limit and keep track of who sees the information.
- We will remove your name and other direct identifiers (like your Social Security number) from your information and replace them with a code. There is a master list linking codes to names. This list is kept secure, and very few people have access to it.
- To work with your health information, researchers must promise not to try to find out who you are.
- We will tell you if there is a data breach.
- The All of Us Research Program has Certificates of Confidentiality from the U.S. government. This will help us fight legal demands (such as a court order) to give out information that could identify you.
- You can withdraw (quit) at any time. If you withdraw, you can choose whether All of Us can keep or delete your information. If you ask us to remove it, it will not be used for any further studies. You can also decide whether we keep or destroy any samples you may have given.
Learn more about how we are keeping your data safe.