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Our nation and our world faced huge challenges this year. In response to COVID-19, we all had to make some major adjustments, including some changes to our program. But amid this hardship, the All of Us Research Program made some major strides. Read about some of the advances in 2020 that made us proud.
All of Us was excited to start returning DNA results to participants this year! We had a lot of work to do to get ready for this step. We launched the new Consent to Receive DNA Results in participant accounts. You can choose whether you want to receive each type of results that we’ll return. We set up our Genetic Counseling Resource, which will help make sure you understand what the results mean. And researchers started to analyze DNA.
Now some participants have started to receive information on genetic traits and ancestry. Traits include things like whether you are likely to be lactose intolerant and whether your earwax is flaky or sticky. Ancestry is information on what part of the world your ancestors came from. To get results, you need to have provided blood or saliva samples and completed the Consent to Receive DNA Results. If you have taken those steps, but you haven’t started receiving results yet, stay tuned! If you choose to receive results, you’ll get them on a timeline that is specific to you. And you’ll get the results over time, not all at once.
This year, researchers started to use All of Us participant data for studies. This is a crucial step toward fulfilling our mission to speed up health research. Making new discoveries doesn’t just require the data that our participants provide; it also requires researchers using the data. In May, we started inviting researchers to use the data by opening the All of Us Researcher Workbench.
This milestone came just two years after we began national enrollment. So far, more than 450 researchers have started exploring our data and tools! We want to make sure that researchers who use the data—just like our participants—are from diverse backgrounds. Check out the research projects that are currently under way.
The researchers aren’t just studying health questions. They’re also helping us improve the way we provide data to them. Their feedback will help us make the best Workbench we can. And that will help researchers learn more about why people get sick or stay healthy.
The COVID-19 pandemic has led to many changes. We want to know how experiences during the pandemic are affecting people’s lives, their health, and their communities’ health. So we launched a new survey to help find out. We first released the COPE survey in May.
We also wanted to understand how the pandemic’s effects change over time. We’ve released the survey five times this year. We asked participants to take each version of the survey. Between May and July, more than 62,000 participants took the survey!
We appreciate the information that participants are giving us. And participants find the survey to be helpful, too. Lenora, a participant from Milwaukee, Wisconsin, told us, “I appreciate All of Us acknowledging that these are different and difficult times for all of us. The COPE surveys show that the program is intentional in trying to gather information from all people but also intentional in trying to offer support to its participants in this unique time.”
We hope that you’ll take the survey every time it’s available. Your responses are valuable each time. You can take the latest version of the survey now! To take the COPE survey, log in to your All of Us account or sign up today. The survey will take about 10 minutes to complete. Thank you for helping us learn about your experiences this year. We plan to continue the COPE survey into January, and we look forward to your input.
We’ve been checking in with participants this year. But participants have also been checking in with each other. Our national Participant Ambassadors (PAs) are a group of participants who give input on specific parts of All of Us. This year, we started holding “In This Together” calls with the PAs. They’ve talked about ways to cope, their activities in quarantine, and how they—and their communities—are doing.
Our community partners found new ways to connect, too. The community partners are organizations that work with us. They help their communities learn about All of Us. Here are just a few of the things they’ve been up to:
We’re grateful for our partners’ hard work and creativity. And we hope you’re finding ways to stay connected, too. (Check out the next story for some ideas!)
As you can see, we’ve taken some exciting steps this year. We look forward to building on that progress in the years to come. See you in 2021!
The holiday season is meant to be a time of peace and joy for many. But it has not usually been stress-free—even in previous years.
If you usually get together with family and friends, this year's pandemic social distancing guidelines might complicate matters. On the other hand, if you're already feeling isolated, building connections or community might feel especially hard.
Regardless of the different challenges you may be facing, you may be able to prepare for what’s coming. How will your plans change, and what can you do to make up for what you might miss? According to infectious disease experts, the safest way to celebrate this year is through virtual gatherings that bring people together from far away or gatherings that include just the household members in your bubble.
Create new traditions. Talking about what you value the most about winter get-togethers might lead to new ideas about how to celebrate that. Can you cook and eat over video apps? Or play games? How about a Zoom talent show or skits that re-create holiday stories?
Here are some other tips to make the most of this holiday season.
Did you know that All of Us participants can receive the free biweekly My Medical Minutes e-newsletter? Full of timely and valuable content, each issue has the latest health news. It’s a great way to stay up to date on the latest health research, discoveries, treatments, and technology. My Medical Minutes is now available in both English and Spanish.
Look for My Medical Minutes in your email inbox every two weeks!
All of Us is committed to including participants who reflect the broad diversity of the United States. To reach that goal, we need to include AI/AN participants. And we need to do so in a way that is culturally appropriate. This year, we continued a consultation process with tribal leaders. We began the process in 2019, holding meetings with leaders from around the country. Now, we’re working on a final report that will explain what we learned and our plans for including AI/AN participants. We plan to release the report in early 2021.
Read more about All of Us tribal engagement.
Since the pandemic started, All of Us participants have shared their stories through our COVID-19 Participant Experience (COPE) survey. The survey asked questions about mental health, social distancing, and more. Now those survey answers are being shared with researchers through our Researcher Workbench. Experts can use this data to better understand how COVID-19 is affecting many different parts of our lives and health.
Want to learn more? You can see a summary of the survey results in the Data Browser.