More than 230,000 people have enrolled in the All of Us Research Program since it was introduced by the National Institutes of Health last May, 175,000 of whom have completed the core protocol, according to an update on the program published in the New England Journal of Medicine and reported by the American Hospital Association.
The 21st Century Cures Act of 2016 authorized $1.5 billion for the program, which aims to enroll at least 1 million volunteers from diverse communities to share health and lifestyle information over time in a secure and private way for research in precision medicine, an emerging approach to disease treatment and prevention that considers differences in people's lifestyles, environments and biological makeup. Participants will also have the opportunity to contribute data from sensors and mobile health devices and be contacted for future research opportunities.
Two major goals set this effort apart from typical medical research, asserted the AHA, a partner of the initiative. First, they aim to have 50 percent of participants from racial and ethnic minority communities. Second, they aim to have 75 percent of participants from groups that have been historically underrepresented in research. The All of Us Research Program aims to build one of the largest, most diverse biomedical data resources.
Top 10 things for providers to know:
1. Participation is free.
2. Patients do not need to change providers to join.
3. Enrollment will not interfere with the way patients receive care from their current health care team.
4. Participants will be asked to complete online surveys about their health history, lifestyle habits, and environment.
5. Participants may be asked to provide access to their electronic health records.
6. Participants may be asked to visit a partner site to have basic physical measurements taken and to provide blood and urine samples. If they do so, they will receive $25 for their time.
7. The program has rigorous safeguards in place to protect data security and participant privacy.
8. The program may last for 10 years or more.
9. Participants may withdraw at any time.
10. Participants will have access to their own data and summarized results from across the program.
