All of Us Research FAQs

View the frequently asked questions about the All of Us Research Program below.

What is the All of Us Research Program?

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. People who join will give us information about their health, habits, and what it’s like where they live. By looking for patterns, researchers may learn more about what affects people’s health.

What will you ask me to do?

If you decide to join the All of Us Research Program, we will ask you to share different kinds of information. We will ask you basic information like your name and where you live, questions about your health, family, home, and work. If you have an electronic health record, we may ask for access. We might also ask you to give samples, like blood or urine.

What will happen to my information if I decide to withdraw from the All of Us Research Program?

If you decide to leave the program, you will have two choices. You can let the All of Us Research Program keep using your samples and information for new studies, or you can make them unavailable.

If you choose the first option, researchers can still use the information you have already contributed.

If you choose the second option, your information will not be used for new studies. We will destroy your samples. We will remove your information the next time we update the database. Once that happens, researchers who access All of Us data cannot get your data.

Why should I join the All of Us Research Program?

You will be contributing to research that may improve health for everyone. Here are some examples of what researchers might be able to discover:

  • 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.

How long will the All of Us Research Program last?

All of Us may last for at least 10 years. We hope you will stay involved over time. If you join, you can withdraw at any time for any reason without penalty.

Who will use my information?

The All of Us Research Program will take great care in deciding who can use your information. To use your information, researchers must explain what they plan to do, what they hope to learn, and why their study would be useful.

Only researchers approved by the All of Us Research Program will be allowed to see data from individual participants. Researchers who can see individual participant data will not be able to see names or other information that could identify someone directly.

What will you do to protect my privacy?

Your privacy is very important. We will take great care to protect your information.

  • We will remove your name and other direct identifiers (like your Social Security number) from your information and replace them with a code.
  • Information we have about you will be stored on protected computers. We will limit and keep track of who sees the information.
  • We have strict internal policies and procedures to prevent misuse of data. You can read our Privacy and Trust Principles and our Data Security Policy Principles and Framework at www.allofus.nih.gov.
  • We follow all federal, state, and local laws and regulations for keeping information safe.
  • We will tell you if there is a risk to your privacy because of 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.

Will my information be made public?

Your personal information will be kept private. We will create a database that everyone can use to make discoveries. The information that is public will be about the group of participants. For example, it might show the number of All of Us participants in your state or the average age of people who have joined. No one will be able to use this information to identify you.

Researchers who use All of Us data may come from universities, school groups, drug companies, and other places. If their research leads to new tests, drugs, or other commercial products, you will not get any profits. These inventions will be the property of the researchers or the places where they work.

Will you sell my information to drug companies?

No. All of Us will not sell your information to anyone.

Researchers who use All of Us data may come from universities, school groups, drug companies, and other places. If their research leads to new tests, drugs, or other commercial products, you will not get any profits. These inventions will be the property of the researchers or the places where they work.

Why does the All of Us Research Program want to look at my electronic health records (EHRs)?

Electronic health records (EHRs) are the most complete record of a person’s health. When researchers can study EHR information from many people, they can find patterns. Those patterns can help them understand what keeps people healthy, what happens when people get sick, and even why some drugs cause side effects. It also could lead to new ways to prevent or treat disease. Your EHR information will help speed up health research and medical breakthroughs, which is the purpose of the All of Us Research Program.

When will you collect my EHR information?

With your permission, we will collect your EHR information at least once a year. If you get care with one of our enrollment partners, your providers will send them to us. If you get care elsewhere, we will provide easy ways to gather your EHRs.

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