The National Institutes of Health's All of Us Research Program is celebrating its five-year anniversary this month with the recent expansion of the program’s dataset, which now includes nearly a quarter million whole genome sequences for broad research use.
About 45% of the data was donated by people who self-identify with a racial or ethnic group that has been historically underrepresented in medical research.
The data expansion provides registered researchers access to the world’s largest and most diverse dataset of its kind, paving the way to help advance health equity and uncover health care approaches better tailored to people's genes, lifestyles and environments.
Massachusetts General Hospital is an enrollment partner for All of Us in New England, and has played a critical role in this milestone, working to nurture relationships with diverse participants from throughout the region to ensure strong diversity in the dataset.
To date, more than 32,700 participants have joined All of Us in New England. The genomic data is available to approved researchers across the Mass General Brigham (MGB) system with information from surveys, physical measurements and biosamples (blood, urine and/or saliva), electronic health records (EHRs), and wearable devices.
Launching in 2018, All of Us set out to build one of the largest, richest, most diverse health datasets of its kind.
Thanks to the collective effort of provider organizations like MGB and community partners locally and across the country, the program has moved from promise to progress. In its first five years, All of Us has:
- Enrolled more than 425,000 core participants across the country, including over 24,790 at MGB.
- Connected over 5,000 researchers from different backgrounds and fields of study to All of Us data, resulting in more than 4,400 ongoing research projects. Over 160 MGB-affiliated investigators are already approved to access this data thanks to an institutional Data Use Agreement.
- Shared personalized DNA results with participants, including genetic ancestry and trait results and information about DNA and health, including over 2,200 participants at MGB who have been notified that their results are ready. All of Us is the first large research program to give DNA results back to participants.
Several MGB-affiliated investigators and All of Us New England partners have already demonstrated the usefulness of the program’s data through their own research and contributions to the program, including Dr. Cheryl R. Clark, Principal Investigator for All of Us New England and Associate Chief in the Division of General Internal Medicine and Primary Care at Brigham and Women's Hospital.
Clark also chairs the All of Us Social Determinants of Health Task Force and helped to launch the program’s Social Determinants of Health survey, which has generated responses from over 100,000 All of Us participants.
“I’m really excited about All of Us contributing to health equity so that the research better mirrors and reflects the needs of the people who ultimately are going to participate in care,” says Clark.
The All of Us New England team prioritizes efforts to support the program’s philosophy of engaging participants as partners in health research. The New England team strives to provide bi-directional benefit in all manners of engagement with prospective and current participants, ensuring the return of valuable and useful information to those who join All of Us.
One of the recent projects to be launched by All of Us New England is the new “Conversations with All of Us” podcast. The idea to launch a podcast came as a result of direct feedback from the All of Us New England Community Advisory Panel to provide new ways for interested and current participants to get more deeply connected with the program.
The podcast explores the evolving world of health research, and the role we can have in creating a healthier future for generations to come. Episodes will cover such topics as diversity in health research; current events and topics being discussed in health; local community partnerships; and research being conducted using All of Us data.