A central principle of the All of Us Research Program is to include participants as partners. Recently, 22 additional individuals have joined the program to serve on All of Us committees and help support the design, implementation, and governance of the program.
“Building positive, long-term relationships with participants is at the heart of our efforts,” said Eric Dishman, director of the All of Us Research Program. “We want to work with participants to co-invent a program they’re excited to be part of, that provides value to them, and that helps drive scientific discoveries to benefit health.”
“We look to our participant partners to help ensure our efforts reflect the diverse needs of our participants, including communities often underrepresented in research,” said Dara Richardson-Heron, M.D., chief engagement officer of the All of Us Research Program. “In growing our roster, we are giving added voice to participants, taking a crucial step in living up to our values.”
Seven individuals will serve on the program’s advisory and governing bodies—the Advisory Panel, Steering Committee and Executive Committee:
- Michael Castro, Bronx, New York
- Katherine Chang, Los Angeles, California
- Ana Carolina Dantas Machado, Los Angeles, California
- Miriam Guzman, Chicago, Illinois
- Richard Hochfelder, Longwood, Florida
- Michelle McNeely, Dallas, Texas
- Zachary Orlov, Boston, Massachusetts
Fifteen individuals will serve on working groups and task forces to provide input on specific aspects of the program, such as research priorities, participant retention, privacy and security, and the meaningful return of information to participants. These individuals, nominated by All of Us health care provider organizations across the country, include:
- Joyce Brown, Chicago, Illinois
- Hugo Campos, Oakland, California
- Ben Dorshorst, Marshfield, Wisconsin
- Miguel Flores, Jr., Tucson, Arizona
- José Iraheta, Chelsea, Massachusetts
- Valerie Levesque, Meriden, Connecticut
- Evelyn Ortiz, Yonkers, New York
- Ana Pavon, Leesville, South Carolina
- John Quintero, San Diego, California
- Marilyn Roman, Miami, Florida
- Ellen Roy, Knoxville, Tennessee
- Elizabeth “Beth” Rubinstein, Detroit, Michigan
- Shawn Smith, Pittsburgh, Pennsylvania
- Tyrone Thigpen, Jackson, Mississippi
- Vilma Velez, Cortland Manor, New York
The incoming participant partners join existing representatives Randee Bloom of West Bloomfield, Michigan; Patricia Butts of New York, New York; Stephen Mikita of Salt Lake City, Utah; and Karl Surkan of Philadelphia, Pennsylvania.
The effort to include participant partners is being administered by the All of Us Engagement Core, led by Consuelo H. Wilkins, M.D., MSCI, executive director of the Meharry-Vanderbilt Alliance in Nashville, Tennessee. The Engagement Core is comprised of national leaders in medicine, engagement, and ethics and—in collaboration with NIH—will serve a vital role in ensuring the All of Us Research Program succeeds in elevating participants’ voices throughout the program.
“Involving participants as partners is a substantial shift in how biomedical research is conducted. All of Us will engage participants at an unprecedented depth and scale, which will not only benefit this program, but will set the standard for future research projects,” said Wilkins.