frequently asked questions

Creating the right health approaches and care for the right person is called precision medicine. Getting the right information to make that happen is the goal of the All of Us Research Program from the National Institutes of Health (NIH). The All of Us Research Program is asking one million people to come together to create the largest health database ever. Researchers can use this data to better understand disease. This may create a healthier future for generations to come.

To get there, we want to create the largest health data resource ever. By understanding people’s health, neighborhood, family, and lifestyle, researchers will have information to better understand health and disease. This information is essential to create a healthier future for generations to come.

The New England Hub for the All of Us Research Program is based at Massachusetts General Hospital, Brigham and Women’s Hospital, Newton-Wellesley Hospital and Boston Medical Center. We’re calling on volunteers like you to represent the greater Boston area!

If you join, you will be contributing to research that may improve health for everyone. Our goal is to understand what makes people sick and to develop new treatments. 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 as an individual

Also, you will be able to see your All of Us 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 doctor.

The All of Us Us Research Program is now in beta testing. Once the program is fully launched, there will be three ways to join:

  • Visit the All of Us website joinallofus.org.
  • Download the All of Us app.
  • If you get health care at one of our affiliated health care provider organizations, you can join there.

Because All of Us is research, you will be asked to complete an informed consent process. This process tells more about what is involved, and the risks and benefits of joining.

If you decide to join All of Us, 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. We will ask you to share your electronic health record. We will also ask you to come to one of our New England enrollment clinics to give basic physical measurements as well as blood and urine samples.

We will take great care to protect your information. Here are a few of the steps we will take:

  • Information we have about you 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 date of birth) from you information and replace them with a code.
  • 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 any legal demand (such as a court order) to give out identifying information.

We will offer you $25 after you finish the visit for physical measurements and sample collection.

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