Health Information

Health Information FAQs

If I join, do I have to do all of the activities?

If you decide to join All of Us, 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 All of Us.

You will be able to choose how frequently we contact you. From time to time, we may send you new surveys or offer other ways for you to share information about your health.

Who can see the information I give All of Us?

We will create a public database on the All of Us website. The information in the database will be about the group. For example, it might tell the average age of the people who have joined All of Us. It will not include information about individual people. It will not include your name or other information that directly identifies you. Everyone can use the public database to make discoveries.

We will also create a scientific database. The scientific database will have individual-level information about people in All of Us. Access to this database will be controlled. Researchers will have to get permission from the All of Us Resource Access Committee to use this database. 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.

What is an electronic health record (EHR)?

Health records are the information collected when you get health care. Electronic health records, or EHR, are when this information is kept in secure electronic systems.

What information is in my EHR?

The information in your EHR depends on what kinds of health care providers you see. Your EHR tells about the health problems for which you have received care. It might have information about the medicines you take. It might have test results. It might have images, like X-rays. If you have had a medical procedure, notes about it will probably be in your EHR.

Is there sensitive information in my EHR?

There might be sensitive information in your EHR, for example, about your use of alcohol or drugs. Your EHR might have information about sexually transmitted infections, like HIV. It might have results from genetic (DNA) tests.

If you have seen counselors or doctors who treat addictions or substance use disorders, information about your care might be part of your EHR. The same goes for if you have seen counselors or doctors who treat mental health, like depression or bipolar disorder. This information would be about your diagnosis and treatment.

Can I do the physical measurement and sample activities from home?

If we ask you to have physical measurements taken and give samples, you will have to go to a designated Spectrum Health Clinic location for All of Us.

In the future, we may offer home visits in limited cases. In general, we will offer home visits only to people who have limited mobility or are too sick to travel. 

Will my health information be shared with any insurance companies (health, life, disability, etc.)?

We take your privacy seriously. We will take great care to protect it. But, if you are injured because of All of Us and you have insurance, your insurance may be billed.

If there is a data breach, insurance companies could get access to the information we have about you. Even without your name, there is a chance someone could figure out who you are. Your information could be misused. We believe the chance of this is very small, but it is not zero.

What will you do to protect my privacy?

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 date of birth) from your information and replace them with a code. There will be a master list linking the codes to names, but we will keep it separate and secure.
  • In order 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 any legal demand (such as a court order) to give out information that could identify you.
 
Still, loss of privacy is a risk of taking part in All of Us. Even without your name, there is a chance someone could figure out who you are. Your information could be misused. We believe the chance of this is very small, but it is not zero.

Will you ever give out my name or other information that identifies me to anyone outside of All of Us?

If you join, there are a few times when we might need to give out your name or other information about you. For example:
  • We may give out information about you to protect your health or the health of others, including:
    • if we learn or suspect that you are being abused
    • if we learn or suspect that you are abusing, neglecting or have abandoned someone who depends on you for care, like a child or dependent adult
    • If we learn that you plan to harm someone
    • If we learn that you have certain diseases that could be transmitted to others
  • We will give out information to meet U.S. research laws and regulations. One requirement of doing research is that we let officials from the U.S. government review our work. This is to make sure we are doing things the right way.

What are the risks of taking part in All of Us?

The main risk of taking part in All of Us is to your privacy. If there is a data breach, someone could get access to the information we have about you. Even without your name, there is a chance someone could figure out who you are. Your information could be misused. We believe the chance of this is very small, but it is not zero.

We will gather information from you through the All of Us website. You may be asked to wear a health tracker. There is a risk to your privacy whenever you use an app, website, or health tracker. In general, there is no additional risk to your privacy if you use any of these technologies as part of All of Us. However, because the All of Us Research Program will be collecting many different types of information from you, there may be additional risk to your privacy in case of a data breach because of the amount of information that the database contains.

Although we will not give researchers your name, we will give them basic facts such as your race, ethnic group, and sex. This information helps researchers learn whether things that affect health are the same in different groups of people. These findings could one day help people of the same race, ethnic group, or sex as you. However, others could misuse the information to support harmful ideas about groups.

If you give a blood sample, the most common risks are brief pain and bruising. Some people may become dizzy or feel faint. There is also a small risk of infection.

Taking part in All of Us may have risks that we don’t know about yet. We will tell you if we learn anything that might change your decision to take part.

Can I share my information if I want to?

Yes, you can share your All of Us information with anyone you choose. For example, you can share your information with your health care team. You can share your information with your family or loved ones. You will be able to access your information online through the All of Us Participant Portal.

How long will you keep my information?

Unless you withdraw (quit), there is no limit on how long your health data will be stored and used for research. Your data may be useful in improving health for generations to come.

You can decide to withdraw at any time. If researchers have already used your information in their studies, we cannot get it back. But we will remove your information and destroy your samples so that they cannot be used for new studies.

How do I withdraw from All of Us?

You can decide to withdraw (quit) at any time. You can tell us by calling us toll free at 1.833.564.6255. You can also email us at allofus@spectrumhealth.org.

We will stop collecting information and destroy your samples. If researchers already have your information for their studies, we cannot get it back. But your information and samples will not be part of the All of Us public or scientific databases going forward.

If you withdraw and want to join again in the future, you will need to give us your information and samples again.

What happens if I withdraw from All of Us?

If you decide you want to withdraw (quit) you can tell us through email at allofus@spectrumhealth.org or by calling us toll-free at 1.833.564.6255.

Even if you withdraw, we will keep your name and basic contact information in the study records. It will not be used for research of any kind.

If researchers have already have your information for their studies, we cannot get it back. But your information and samples will not be part of the All of Us public or scientific databases going forward.

If I withdraw from (quit) All of Us, can I join again later?

You may join again at any time. However, you will need to give your information again if you rejoin. We may also ask you to give your samples and measurements again. This is because we remove your information and destroy your samples when you withdraw (quit).