Learning and Growing
The All of Us Research Program is a big project that will include many, many people. To test our ideas and make sure that we’re creating the best program possible, we conduct many small experiments. We start with these small experiments to find out whether something works well or needs to be changed before we ask a lot of people to get involved.
Starting with small experiments can help answer many questions. Some examples:
- Are we collecting enough—and the right—information to answer a particular research question?
- Are we making participants feel welcome and valued?
- Are we measuring the right things?
- Why do some participants stay active in the program, while others do not?
At the end of each experiment, we review what we learned and decide what we should do differently. We may find that some ideas just don’t work for our needs. Other ideas may just need small changes. But no matter the outcome, every experiment helps us become the best program we can be.
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.
Spotlight: Meet Mitch, an All of Us Research Program Community Engagement Leader
Mitchell R. Lunn, M.D., M.A.S., loves traveling — especially the flights to and from his destinations. “I feel a little bit of magic every time an airplane takes off,” he says. Yet for all his globe-trotting, Dr. Lunn says, he’s never found another program quite like All of Us. “I think All of Us is unique in the world.”
For Dr. Lunn, part of what makes All of Us so special is its commitment to diversity and inclusion. He and his team at Stanford University’s PRIDEnet are one of All of Us’s community engagement partners—groups that work to help make sure All of Us is truly a program for everyone. PRIDEnet’s focus is on working with LGBTQ communities.
“A lot of LGBTQ people who want to participate in research have told us that they haven’t been included,” Dr. Lunn said. “They say that their participation feels like an afterthought.”
Being left out of research can mean that people are left out of discoveries, advances, and treatments. But with the support of the PRIDEnet team, All of Us is doing things differently.
“Our job is to engage LGBTQ people from across the country,” Dr. Lunn says. “To engage, excite, and educate them about taking part in All of Us.” And it’s a big, important task: “This is the first time that LGBTQ people have been included in a large federal health research program from the very beginning.”
“This is a historic program as a whole, but it’s super historic for LGBTQ people,” Dr. Lunn says. “Making the extra effort to be supportive and affirming of LGBTQ people is a very important step, and all of us can help make that happen.”
All of Us Seeks Insights From Tribal Leaders Through Formal Consultation
The All of Us Research Program began government-to-government consultation with American Indian and Alaska Native Tribal Nations in spring 2019 to ensure that all issues and concerns related to research among American Indians and Alaska Natives are understood. The program is committed to identifying meaningful ways for members of Tribal Nations to participate in the program that are culturally appropriate and may benefit the health of their communities.
All of Us has a special focus on engaging communities that are historically underrepresented in biomedical research, including American Indians and Alaska Natives. With information from diverse populations, researchers can learn more about individual differences that influence health and develop more tailored treatments and prevention strategies.
“For a long time, medical research focused on some groups of people while excluding or mistreating others,” said All of Us Director Eric Dishman. “But All of Us wants to change that. We want all communities to have a seat at the table to inform the implementation of the program, with an equal opportunity to participate in the research and share in its benefits.”
The All of Us Research Program has actively sought input from diverse communities, including Tribal members, from its start. In 2017, the program created a Tribal Collaboration Working Group with members from different Tribal Nations. In 2018, the working group wrote a report sharing its insights and advice. Now All of Us is sharing this report with Tribal communities and developing an upcoming report summarizing the feedback and guidance received through several Tribal consultations:
- June 20: HHS Regional Consultation (Region 9) in Sacramento, California
- June 24: Consultation at the 2019 National Congress of American Indians Mid Year Conference and Marketplace in Sparks, Nevada
- July 11: HHS Regional Consultation (Region 10) in Spokane, Washington
- August 21: HHS Regional Consultation (Regions 6, 7, and 8) in Denver, Colorado
In addition, All of Us held several listening sessions with Tribal communities.
“It has been very energizing to hear and learn from Tribal leaders and community members so far, and we are honored that other communities are inviting us to conduct additional listening sessions around the country. These will help us develop and publish a summary report, which will be just one step in the ongoing journey we hope to travel with Tribal Nations,” said Mr. Dishman. “We hope the All of Us journey will extend beyond our formal consultations and report through further feedback and continuing conversations with Tribal Nations.”
Visit the All of Us Research Program Tribal Engagement webpage for the summary report’s location, more information, and the most up-to-date schedule of events.
September Is Pain Awareness Month
Pain is the most common reason people seek medical care. It’s also the most common condition among people who have shared their health records with All of Us. Check out the Research Hub to learn more.
Chronic pain is pain that lasts more than several months. It is also very common. One 2012 survey found that about 25.3 million U.S. adults experienced pain every day. That’s roughly 1 in every 10 adults.
Treating pain is hard, says Nora Volkow, M.D., the director of the National Institute on Drug Abuse. At the All of Us anniversary event in May, she talked about this complicated problem and how the program may help.
Research with All of Us data could uncover better ways to find the right treatment for each person’s pain, Dr. Volkow said. And successfully treating pain can keep it from becoming chronic.
“All of Us matters because it addresses diseases for which all of us are vulnerable,” Dr. Volkow said. “It also matters because it is for each one of us.” The program is special, she said, because it looks at people as individuals and all together. It looks at what makes each person unique and at the things we have in common.
For pain and its treatment, Dr. Volkow said, “This program can be transformative.”
Celebrating Pride Month
June is LGBTQ Pride Month. This past June, our partners at PRIDEnet joined the party at San Francisco Pride. Visitors to the All of Us booth learned about the program and its work to ensure LGBTQ people feel welcome and included. PRIDEnet also created pronoun stickers for All of Us enrollment sites. Staff members and participants can wear these stickers to let others know whether they use “he/him,” “she/her,” or “they/them” pronouns.
Refer a Friend
We can’t thank you enough for being our partner in this effort to speed up health research and medical breakthroughs.
We want to encourage you to invite family and friends to join you in this research program. You know why you chose to participate in All of Us, which makes you the best person to explain why it might be important to those you care about. Send them here for more information.
Reminder: Your Surveys
If you haven’t already done so, now’s a great time to pop into the Participant Portal and fill out surveys about your health and lifestyle. These surveys help us paint a more detailed picture of our participants. This will help researchers better understand connections between our genetics, environments, and health. Visit the Participant Portal.
The All of Us Speaker Series brings great minds and interesting ideas to you via online videos. You can view recordings of our first events online. Check out the Speaker Series website to learn more and see what’s coming.