February 2, 2018: Early Progress on the All of Us Research Program

Speaker

Joshua C. Denny, MD, MS, FACMI
Professor of Biomedical Informatics and Medicine
Director, Center for Precision Medicine
Vice President for Personalized Medicine
Vanderbilt University Medical Center

Topic

Early Progress on the All of Us Research Program

Keywords

Pragmatic clinical trial; All of Us; Electronic health record

Key Points

  • The Framingham Heart Study was a major influence of All of Us, because it followed a small number of participants, but followed them very closely, and showed a significant impact in lowering cardiovascular disease.
  • Engagement and diversity are core goals of the All of Us Program, and seeing patients as partners is a guiding principle.
  • Participants can enroll in the protocol through either the traditional route of health care provider organizations, or as direct volunteers.
  • There will be centralized electronic health (EHR) data broken into three tiers: Public, registered, and controlled, with any obvious identifiers removed from all.
  • A major goal is to give All of Us participants access to information, including study updates and aggregated results.

Discussion Themes

The All of Us Program does not intend to replicate the U.S. population, but rather to focus on under-represented populations.

Researchers can apply for data from the All of Us Biobank, a repository that stores and manages biological samples, by posting their research questions. There has been some pushback from researchers on publicly sharing their questions, but it seems to promote efficiency and collaboration.

Patient portals and smartphone apps are two vehicles that the All of Us Program will use to deliver information and results back to participants.

 

For information on All of Us, visit http://bit.ly/2tMgH6b

Tags

@PCTGrandRounds, @jdnashville, @VUMChealth, @AllofUsResearch, #pctGR