NASHVILLE, Tenn. Twenty-one participant partners from across the United States joined about 400 of their fellow All of Us Research Program (AoURP) consortium members for two full days of learning, networking and honest conversations about this historic effort at the AoURP Face to Face Meeting in Bethesda, Maryland from October 28 through 30, 2019.
Historic research program
All of Us is a historic research program, funded by the National Institutes of Health (NIH), to gather health data from 1 million people around the United States in order to accelerate and improve Precision Medicine in the US. Participant partners are enrolled AoURP participants who represent the participant voice in All of Us.
They represent community partners, including regional medical centers, community health centers, universities, the Veterans Administrations and direct volunteer organizations.
They also represent the geographic, social and racial diversity that All of Us is attempting to enroll in the Program. Participant partners serve on every level of governance in the program – the Executive and Steering Committees, the external Advisory Panel and on the governance groups which oversee AoURP scientific decision-making.
Stars of the meeting
The participant partners attended the governance breakout sessions at the meetings, attended the plenary sessions and, according to many who attended, they were the stars of the meeting.
On Tuesday morning, seven of participant partners joined Dr. Consuelo Wilkins, Director of the Engagement Core, on the stage to share the impact they think they have had on All of Us. These participants had recorded “testimonials,” which were debuted at this meeting to hundreds of gathered and online attendees. These testimonials were short video clips about why they had joined the program and what being a part of it has meant to them.
'Inspired and challenged'
“Hearing from our participant partners about what impact they have had on the program, and what surprised them about research and researchers, inspired and challenged the consortium members,” remarked Dr. Wilkins.
She added, “Having these participant partners take such a prominent place in our meeting was a visual way to show that integrating participants into the governance and oversight of research can be done.”
A unique phenomenon
“It was great to see that so many participant partners are embedded in various committees, subcommittees and workgroups,” commented one participant who attended the meeting.
The energy, passion, and commitment these participant partners bring to AoURP are crucial for the success of the program, and their multi-level involvement in the research program makes it a unique phenomenon in US research. Vanderbilt University Medical Center (VUMC) is proud to be a part of this effort and in helping these participant partners contribute so substantially to All of Us.
About the Meharry-Vanderbilt Alliance
Founded in 1999, the Alliance bridges the institutions of Meharry Medical College and Vanderbilt University Medical Center. Its mission is to enrich learning and advance clinical research in three primary areas -- community engagement, interprofessional education and research -- by developing and supporting mutually beneficial partnerships between Meharry Medical College, Vanderbilt University Medical Center and the communities they serve. Through community engagement, the Alliance serves a large community of stakeholders including surrounding universities and colleges, community organizations, faith-based outlets and community health centers. Its interprofessional education enhances students' interdisciplinary understanding and improves patient outcomes through integrated care. The research conducted provides access to experienced grant writers and materials supporting the grant application process and facilitates grant-writing workshops.