On May 6, the National Institutes of Health will open national enrollment for the All of Us Research Program in collaboration with the National Minority Quality Forum and other partners. All of Us is a unique effort to advance individualized prevention, treatment and care for people of all backgrounds. The overall aim of All of Us is to enroll 1 million or more volunteers and oversample communities that have been underrepresented in research to make the program the largest, most diverse resource of its kind. Individuals ages 18 and older will be able to enroll, regardless of health status.
“The time is now to transform how we conduct research-with participants as partners-to shed new light on how to stay healthy and manage disease in more personalized ways. This is what we can accomplish through All of Us,” said NIH Director Francis S. Collins, M.D., Ph.D.
Precision medicine is an emerging approach to disease treatment and prevention that considers differences in people’s lifestyles, environments and biological makeup, including genes. By partnering with 1 million diverse people who share information about themselves over many years, the All of Us Research Program will enable research to more precisely prevent and treat a variety of health conditions.
All of Us seeks to transform the relationship between researchers and participants, bringing them together as partners to inform the program’s directions, goals and responsible return of research information. In service of this objective, NIH has funded more than 100 organizations throughout the U.S. to be partners in the program, including the National Minority Quality Forum.
“I have high expectations for the All of Us Research Program,” said Gary A. Puckrein, PhD, President and CEO of the National Minority Quality Forum. “Success will require greater inclusion of diverse researchers in the program, willingness and ability of the participants to make a long-term commitment to this unique initiative, and resource support for the community-based physicians who will be de facto primary points of contact for participants. The National Minority Quality Forum is pleased to partner with the National Institutes of Health on this forward-looking precision medicine initiative.”
On May 6, the All of Us Research Program will host special events in diverse communities around the country. During the launch phase, the National Minority Quality Forum will continue its systems-oriented approach to increasing the value of the program to those who are underrepresented in biomedical research, including public awareness messaging to the All of Us multi-stakeholder constituency. In June 2018, the National Minority Quality Forum will host its second Thought Leaders in Precision Medicine Roundtable to explore barriers facing access to All of Us data and support for researchers in the public and private sectors. In February 2018, during the All of Us beta-testing phase, the National Minority Quality Forum hosted its first Thought Leaders in Precision Medicine Roundtable to develop recommendations to program leadership on the following: Fulfilling the Potential of the All of Us Research Program for Populations That Are Historically Underrepresented in Biomedical Research.
“All of us are unique, but today we live mostly in an era of ‘one-size-fits-all’ medicine,” said Eric Dishman, director of the All of Us Research Program. “I’m alive today because of precision medicine and I think everyone deserves that same opportunity no matter the color of your skin, your economic status, your age or your sex or gender. In other words, it will truly take all of us.”
Participants who enroll in All of Us will be able to access their own health information, summary data about the entire participant community and information about studies and findings that come from All of Us. Participants are asked to share different types of health and lifestyle information, including through online surveys and electronic health records (EHRs), which will continue to be collected over the course of the program. At different times, some participants will be asked to visit a local partner site to provide blood and urine samples and to have basic physical measurements taken, such as height and weight. In the future, participants may be invited to share data through wearable devices and to join follow-up research studies, including clinical trials. In future phases of the program, children will be able to enroll, and the program will add more data types, such as genetic data.
To learn more about the All of Us Research Program and how to join, please visit https://www.JoinAllofUs.org. Interested individuals may take part in social media activities (#JoinAllofUs) or tune in on May 6 at https://Launch.JoinAllofUs.org to watch speakers across the country talk about precision medicine and the power of volunteering for research.
For additional information about the National Minority Quality Forum’s initiatives, please contact Gretchen C. Wartman, Vice President for Policy and Program, at 202-223-7560 or gwartman@nmqf.org.
About the National Minority Quality Forum
The National Minority Quality Forum (NMQF) is a 501(c)(3) not-for-profit, non-partisan, independent research and education organization. The vision of NMQF is a health services research, delivery and financing system that provides quality and effective health services to the biodiverse American general population of the 21st century. NMQF helps assure that national and local quality improvement initiatives are informed by scientific evidence, and place a priority on the quality of care and patient outcomes in all populations.
“All of Us” is a registered service mark of the U.S. Department of Health & Human Services (HHS).