What is the Precision Medicine Initiative®?
The Precision Medicine Initiative® (PMI) is an exciting new program. Our goal is help researchers to learn more about what affects people’s health. PMI will give new information and tools to people researching health. Their discoveries may lead to more personalized care and treatments.
What is precision medicine?
Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.
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. All of Us is part of the Precision Medicine Initiative. We hope that more than a million people will join All of Us. 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.The All of Us Research Program will last for many years. This will allow us 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 All of Us?
The National Institutes of Health (NIH) runs the All of Us Research Program. There are many groups helping the 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 several health care organizations that are working with us to help you sign up. Learn more about our partners on our website: https://www.nih.gov/AllofUs-research-program/program-components
Why should I join All of Us?
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 from their research:
- 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.
How will All of Us help me?
All of Us is not medical treatment. You will not get direct medical benefit from taking part in the All of Us Research Program. That said, you may indirectly benefit from taking part in All of Us. For example, we will give you ways to see to the information you share with us and the information we learn about you. This information may be interesting to you. You may learn about your health. If you choose, you will be able to share your All of Us information with your health care team. You will have the option to learn about additional research opportunities. Finally, you will be helping researchers make discoveries that may help future generations.
How do I join All of Us?
The All of Us Research Program starts in 2017. There are three ways to join:
- Complete the online survey.
- Call the Support Center toll free at 1.833.564.6255 or email us at firstname.lastname@example.org.
- If you get health care at one of our affiliated Health 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.
What will you ask me to do?
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. We will ask you questions about your health, family, home, and work. If you have an electronic health record, we may ask for access. We may ask you to go to a local clinic or drug store for a free appointment with us. At this appointment we would measure your weight, height, hips, and waist, as well as your blood pressure and heart rate. We might ask you to give samples, like blood or urine at the appointment.
Do I have to give my Social Security number?
No. We may ask for your Social Security number to help match your information to other information, but you do not have to give it to us.
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 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.
Can I join All of Us if I don’t have a computer or internet access?
Some All of Us activities happen online. You will need to use a computer, tablet or smartphone to complete them. You can visit the All of Us website from a computer at your local library. Or, you can call our toll-free number for assistance at 1.833.564.6255.
Is having an email address required?
No. You can join All of Us using an email address or phone number. What will you do with my email address or phone number? We may email you or call you to schedule an appointment. We may send you emails about All of Us. We may email or call you to tell you about other opportunities to participate in research. We may reach out to ask you for updates or additional information about your health.You can tell us if and how often you want to be contacted.
Will you sell my email address or phone number?
No, we will never sell your email address or phone number.
Is All of Us a one-time activity or long-term activity?
Our plan is that All of Us will last for at least 10 years. We hope you will stay involved over time. If you do, researchers may better understand what causes changes in our health and what we can do about it. If you join, you can withdraw (“quit”) at any time for any reason without penalty.
How often will I hear from All of Us?
We will offer regular updates about All of Us. You can choose if you would like to get these updates. If you choose to get the updates, you can tell us how often and in what way you would like for us to contact you. We may contact you to answer surveys from time to time. You can choose to answer the surveys or not. We may contact you to schedule an appointment to provide samples and have measurements.
Will you be studying my disease or condition?
Researchers will use All of Us to study many different diseases and conditions. It is up to each researcher to decide what they study.
How can I enroll in a clinical trial for my specific disease or condition?
A clinical trial is a type of research study. Clinical trials look at specific medical treatments to see if they are safe and effective for humans. All of Us is a research study, but it is not a clinical trial. If you join All of Us, we will ask you if you want to hear about chances to take part in other research. If you say yes, we will let you know about other research studies, including clinical trials. You can then decide if you want to join that study. You can say yes or no and still be part of All of Us. You can also search for clinical trials on our website.
If I am already enrolled in another study, can I still join All of Us?
You can join the All of Us Research Program even if you are in other health studies. If you are already in a clinical trial, you may want to talk with your healthcare team before joining All of Us. All of Us is not a clinical trial, so you should still be able to join.
If I am already enrolled in another study, why should I join All of Us?
The All of Us Research Program is different from other studies. Instead of focusing just on a disease or condition, All of Us will help a lot of researchers study many different things about health. All of Us is also unique because it may last for many years. It will include participants from lots of different backgrounds.
Does it cost anything to join?
Joining All of Us is free. All activities are free. There are no costs to you or your insurance.
Will I be paid?
If we ask you to have an appointment to be measured and give samples and you decide to do it, we will offer you a one-time payment of $25. Your information will be used by researchers to make discoveries. If any of 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 who develop them.
If I join All of Us, will it change my healthcare?
No. All of Us is a research program. It is not medical care. You can keep your current healthcare team even if you decide to join All of Us.
I don’t have a doctor.
There are many helpful websites that may help you find a health care provider. A few sites that may be helpful are:
Will All of Us communicate directly with my healthcare team?
No, but you can choose to share your information with your health care team.
Do I need to have health insurance to join All of Us?
No. All of Us is not medical care. You do not have to have health insurance to join.
Will my insurance know if I join All of Us?
We will not let your insurance know if you join unless you are injured. We do not expect you to be injured. Answering surveys, being measured, and giving samples are very safe activities. They are unlikely to cause injury. But if you are injured because of All of Us and you have insurance, your insurance may be billed.
Can I sign up my child(ren)?
Right now only people who are 18 or older can join All of Us. Children will be able to join in the future.
Do I have to be a U.S. citizen or have permanent resident status to join All of Us?
Anyone who lives in the United States can join All of Us. You do not need to be a U.S. citizen or permanent resident
Will you share my citizenship status with the government?
We will not ask you about your citizenship status. We cannot share your citizenship status because we will not know it.
If I plan to move out of the country, can I still participate in All of Us?
Only people who currently live in the United States can join. As long as you are not planning to move to another country soon, you are welcome to sign up.
Who can I ask if I have more questions?
If you have more questions you can ask us. You can call the All of Us Support Center at Spectrum Health at 1.833.564.6255. You can email us at email@example.com. You can write to us by mail at:
All of Us Program Director
35 Michigan Street NE
6th Floor, MC 56
Grand Rapids, MI 49503
All of Us is a service mark of the U.S. Department of Health & Human Services (HHS).
The All of Us platform is for research only and does not provide medical advice, diagnosis or treatment.