Frequently Asked Questions

Background

What is research?
Research is the process of finding out new things.

What is health research?
Health research is the process of finding out new things about improving people's health.

Why is health research important?
We all want to live long and healthy lives. People who do health research are identifying better preventive care to keep us healthy. And they are discovering new medicines and treatments for when we do get sick.

Participation

What is the All of Us Research Program?
The 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.

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. Spectrum Health is one of those health care organizations.  

 

Health Information

If I join, do I have to do all of the activities?
If you decide to join the All of Us Research Program, you get to choose how much you participate. We are thankful for your involvement at any level. We will ask everyone who joins about their health, family, home, and work. We may also invite you to do other activities, but you do not have to do them.

Will researchers contact me directly?
No. The All of Us staff will be the only ones contacting you about the All of Us Research Program. You will be able to choose how frequently we contact you. From time to time, we may send you new questionnaires or offer other ways for you to share information about your health.

 

Physical Measurements & Samples

How long does the clinic visit last?
The physical portion of your clinical visit may last 20 and 30 minutes. 

What is a sample?
A sample is blood, urine (“pee”), saliva (“spit”) or other material from your body. We may invite you to give samples as part of All of Us. You can say yes or no.

 

 

Data Security

Who can see the information I give the All of Us Research Program?
We will create a database on the All of Us Research Program website. Everyone can use the database to make discoveries. The information in the database that anyone can see will be about participants as a whole. For example, it might tell the average age of the people who have joined the All of Us Research Program. It will not include information about individual people. It will not include your name or other information that directly identifies you.

Only researchers approved by the All of Us Research Program will be allowed to see data from individual participants. These researchers may be from anywhere in the world. They may work for commercial companies, like drug companies. The research may be on many different topics.

How will you protect my information?
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 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. 
  • In order to work with your health information, researchers must sign a contract stating they will 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.