NASHVILLE, Tenn. Consuelo H. Wilkins, MD, MSCI, has played a major role in the development of the national All of Us Research Program, an ambitious effort led by the National Institutes of Health (NIH) to accelerate the prevention and treatment of illness through precision medicine.
Now Wilkins, executive director of the Meharry-Vanderbilt Alliance and a national leader in community-engaged research, has been appointed director of a new Engagement Core to support the program’s design, implementation and governance.
Specifically the Core, which is based at Vanderbilt University Medical Center (VUMC), will select and integrate a diverse group of “participant partners” to ensure the success of the program, which this spring will begin collecting and analyzing health data from a million or more volunteers.
On Friday, April 20, the NIH announced an additional 22 participant partners who will serve on the program’s advisory and governing bodies and on working groups and task forces to provide input on research priorities, privacy and security and the meaningful return of health information volunteered by participants.
“All of Us has made engagement a high priority and funding for our core means that NIH recognizes the considerable time and resources required to meaningfully engage participants across from diverse backgrounds with varying resources and experiences,” Wilkins said.
The Engagement Core is working closely with Dara Richardson-Heron, MD, chief engagement officer of All of Us Research Program who oversees all of the program’s engagement efforts.
Involving participants as active collaborators represents a significant shift in research, which until recently offered little to no involvement to the public beyond volunteering in a study. The Core will ensure that participants are embedded as central partners and empowered to contribute to all aspects of the research.
“Engaging participants as partners allows us to ensure that the very populations often underrepresented in research are not only at the table but have a key voice in leading and shaping the agenda," said Karriem S. Watson, DHSc, MS, MPH, director of Community Engaged Research and Implementation Science in the University of Illinois Cancer Center.
VUMC is partnering with national experts experienced in engaging individuals and communities, including those often underrepresented in research. Key functions of the Core will include preparing participants to work with researchers and also supporting researchers in their efforts to engage participants in designing research.
Another expert in the Engagement Core is Elizabeth G. Cohn, PhD, RN, FAAN, Rudin Professor Hunter-Bellevue School of Nursing, Hunter College, City University of New York. “Creating these tools and processes will level the field allowing participants and researchers to contribute richly and authentically, from their experience and expertise," said Cohn.
They will develop resources and implement training to help overcome inherent barriers to partnership between researchers and participants including differences in group norms and lack of common language.
Other partners include Laura Beskow, MPH, PhD, director of Research Ethics at VUMC, and, at the University of Arizona College of Nursing, Usha Menon, PhD, RN, associate dean of Research and Global Advances, and Laura A. Szalacha, MPhil, EdD, director of Research Methods and Statistics.
“Through robust study and evaluation, we have the opportunity not only to support the All of Us commitment to new levels of participant engagement, but also assist the field by contributing empirical data on effective approaches to integrating participant voices throughout the research process,” said Beskow.
“It is a lifelong dream coming true for us to be able to work on facilitating the inclusion of participants on such an in-depth scale into a flagship program of this nature," said Menon.
They will develop qualitative and quantitative tools to assess readiness, trust, collaboration, dissemination, communication and other measures of participant engagement.
Other VUMC team members include Alecia Fair, DrPH, research assistant professor in the Meharry-Vanderbilt Alliance; Kathleen M. Brelsford, PhD, MPH, research assistant professor of Health Policy; Catherine M. Hammack, MA, JD, associate in Health Policy, and Society; and Ashley Bachelder, MPH, MPS, translational research coordinator, Institute for Medicine and Public Health.
During the program’s planning phase, Wilkins spearheaded the effort to gather face-to-face input from nearly 700 individuals across the country, about half of whom were racial and ethnic minorities. Her team engaged rural communities, sexual and gender minorities, older adults, individuals experiencing homelessness and individuals who are blind and deaf.
VUMC also leads the All of Us Data and Research Center, which is directed led by to Joshua C. Denny, MD, MS, a pioneer in Vanderbilt’s precision medicine efforts.
The Meharry-Vanderbilt Alliance develops and supports collaborative initiatives and programs in biomedical research and clinical science training between VUMC and Nashville’s historically black Meharry Medical College.
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 workshop.
