January 2020 Newsletter
Stick With Us! Why Your Long-term Participation Matters
Doing good research and getting good results often takes time—but those results are worth the wait.
All of Us is an exciting and unique program. Instead of studying one health condition, we want to learn as much as we can about many different aspects of health. This requires collecting and studying as much health data as possible over 10 years or more.
All of Us follows in the footsteps of other important studies that have lasted for many years. One example is the Framingham Heart Study, which started in 1948 with 5,209 participants. Back then, we didn’t know much about heart health or its connection to blood pressure and cholesterol. Through the study, scientists learned that high blood pressure and high cholesterol levels can raise people’s risk for heart disease. This was a huge discovery that has impacted and continues to impact a lot of lives. Seventy-two years later, the study is still going with more than 14,000 participants, and we continue to learn about ways to improve heart health.
Like the Framingham study, over time, All of Us will collect a rich body of data from participants like you to help advance research. The information you choose to share, including your electronic health records (EHR) and surveys, will be part of the largest health data resource of its kind, ever. Researchers can use this data to conduct thousands of studies, which may lead to new treatments and new ways to prevent disease from occurring in the first place. Sharing your health information with All of Us over a stretch of many years is essential to making this happen. We want to make sure we get information from all types of people, especially those who have been underrepresented in research.
All of Us is also unique in that, unlike other research studies, we will return results to those participants who want to receive them. This year we will begin to analyze our participants’ DNA and give participants their information. This could include information about ancestry, traits, and even risks for some diseases. Later on, we may also have results about how people’s bodies might react to certain medicines.
Right now, All of Us participants can learn about their health by taking surveys. And this is just the beginning. New surveys and other activities are on the way.
Studying DNA and giving people their results can be very complicated. We want to make sure we’re doing it right. That takes a team effort, and we’re grateful for everything our participants have done so far to share their data and provide feedback to help shape the program. We believe it will be worth it—for our participants, their families and communities, and the future of health for everyone.
How can you stay involved?
Log in to your All of Us account and complete your surveys. Having trouble logging in? Our team is here to help. Call the Support Center at (844) 842-2855 between 10 a.m. and 7 p.m. ET.
Getting ready for DNA results
All of Us will start analyzing participant DNA soon. In the meantime, if you know that you’ll want to receive your DNA results, make sure you’ve taken these steps:
- Sign the consent to join the All of Us Research Program.
- Agree to share your electronic health records with All of Us.
- Complete the first survey (The Basics).
- Provide your blood, urine, and/or saliva samples when invited to do so.
We will also be introducing a new Consent to Receive DNA Results. In the consent, you can learn what’s involved and choose if you want your DNA results. We will let you know when the consent is available in your All of Us account.
All of Us By the Numbers
# of stops by the All of Us Journey
# of participants who have completed the consent process
# of participants fully enrolled*
*Fully enrolled participants are those who have shared their health information with All of Us, including giving blood and urine or saliva samples.
Protect Your Information. Protect Your Privacy.
Good security is like a chain. Every link must be strong for the chain to work.
At All of Us, we make sure that everyone involved in the program is doing everything they can to protect your health information. We use high quality security technology. Our research and data partners are required to show us that they meet the same strict standards. We ask researchers to register with us and agree to a code of conduct before they can look at All of Us data.
As a participant, there are tips that you can follow to help protect your information. Follow this list of Dos and Don’ts to help keep your All of Us account safe.
- Create a strong password that uses a combination of capital letters, numbers, and symbols
- Log out of your All of Us account when you are done using the Participant Portal
- Keep an updated antivirus software on all your home devices
- Use a trusted password manager software if you have trouble remembering your passwords
- Share your All of Us password with anyone
- Save your All of Us password on a public computer (library, computer lab, Internet café)
- Write your password on a piece of paper that you can easily misplace
- Enter sensitive information if you think someone is watching your screen
If you follow these recommendations, you can help keep your health information safe and secure.
Many people set New Year’s resolutions. It’s easy to set a goal, but over time it can get harder to stick to it. To stay on track with your healthy habits, try these tips:
- Be realistic. Make changes that you can maintain, like eating one more serving of vegetables per day.
- Start small. If you aren’t used to exercise, start with one or two short workouts per week. Then increase your time or days per week as you get stronger.
- Get help if you need it. Some changes are easier to make with support. For example: if you want to quit smoking, call a quit line or check out tools and tips at https://smokefree.gov/
- Stay in touch! Keeping active with All of Us is a great way to learn more about your health. In the coming year we’ll be unlocking even more new features and activities.
Here’s to a healthy and happy 2020 for all!
What’s New with All of Us
All of Us on This Is Us
This past November, we were on TV! A poster for the program had a quick cameo in the NBC show This Is Us. Did you catch it?