Wanted: 1 million or more people to shape precision medicine’s future

Contributing Writer
AMA Wire
Email this page

A quest is underway to recruit 1 million or more volunteers to share information about their health, including biological and physical measurements, lifestyle habits and environmental exposures. Participants will form a longitudinal research cohort intended to improve our ability to prevent and treat disease based on individual differences in lifestyle, environment, and biological make-up.   

In a webinar on Feb. 14, the National Institutes of Health will share information about its All of Us Research Program, a cornerstone of the larger Precision Medicine Initiative which aims to accelerate health research and medical breakthroughs by compiling the “largest, richest biomedical dataset of its kind.” The goal of the All of Us Research Program is to reflect the nation’s diverse population, and ultimately better enable individualized prevention and treatment strategies.

The program is currently in beta testing. NIH plans to open enrollment nationally this spring.

Participants will have opportunities over many years to provide additional data, including linking to their electronic health record. The study plans to track people from all walks of life for decades so researchers can study their health over time.

Participant data will go into a scientific database according to the All of Us FAQ page. The scientific database will contain individual-level data protected by strict security and confidentiality practices and standards. Researchers will be able to seek access to this data for a variety of studies.  Participants will keep their current health care team, but will have access to their own data and summarized results from across the program, which they may choose to share with their doctor.

The NIH says the diverse collection of All of Us participant data may help to:

  • Develop quantitative estimates of risk for a range of diseases by integrating environmental exposures and genetic factors.
  • Identify the causes of individual variation in response to commonly used therapeutics.
  • Discover biological markers that signal an increased or decreased risk of developing a disease.
  • Find solutions to health disparities.
  • Create a platform to enable trials of targeted therapies.

A number of partner organizations and health care provider organizations, including regional medical centers, community health center pilot sites and U.S. Department of Veterans Affairs medical centers, are collaborating in All of Us. These groups, with others to be added later, will help build research protocols and plans, enroll interested individuals and collect health data and biological specimens.

NIH officials said that physicians are valued partners in the initiative and can help by being a resource to patients who ask about the All of Us Research Program and help them understand the value of the research and what it may mean to them, their families and future generations. Physicians also can speak proactively with patients or other providers, and will be able to enroll themselves in the program once it launches.

To enroll in the All of Us Research Program, individuals need to be at least 18 years old and currently live anywhere in the United States. They do not need to be citizens. The project plans to include children at a later time.

Register for the All of Us informational webinar, held Feb. 14, noon CST, to learn more about the program and how you can participate.

The AMA offers online CME on a series of precision medicine education courses to expand your knowledge. Explore precision medicine CME.

Related coverage

Email this page
Show Comments (0)
AMA member Magda Houlberg, MD, chief medical officer at Howard Brown Health in Chicago.
Jul 17, 2018
Social and legal barriers are being hurdled, but LGBTQ medical care has room for improvement, expert panelists said at the AMA’s Chicago headquarters.