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Uniting communications and science to increase diverse representation in precision medicine research
Presidential Innovation Fellows (PIF) leveraged their expertise across marketing and data to help launch unprecedented health research initiatives.
About the NIH All of Us Research Program
The All of Us Research Program at the National Institutes of Health (NIH) works to advance individualized health care by enrolling one million or more participants to contribute their health data over many years. The program aims to reflect the diversity of the United States and to include participants from groups that have been underrepresented in health research in the past, including ethnic, rural, low socio-economic and gender and sexual minorities. It has enrolled more than 270,000 people from across all 50 states -- 80% of whom come from communities historically underrepresented in research.
Enrolling and retaining participants is a challenge for many longitudinal studies, but All of Us’ commitment to previously underrepresented populations requires innovative approaches to build public trust in and researcher use of the program.
How might we ensure that precision medicine serves diverse populations and researchers?
Presidential Innovation Fellows Georgeta Dragoiu and Adele Luta pooled their unique expertise as strategic communications and scientific leaders to support the All of Us Research Program in enrolling participants and activating a research community to help usher in a new era of precision medicine. Working hand-in-hand to meet these challenges, Georgeta launched communications campaigns to recruit a more diverse cohort of participants, and Adele focused on engaging an equally diverse community of researchers to use this rich national resource to drive health discoveries.
Adele Luta (left) and Georgeta Dragoiu (right) at the PIF orientation ceremony.
While Georgeta worked with the Chief Communications Officer to develop data-driven national and regional campaign strategies to enroll the public, Adele worked with the Chief Medical and Scientific Officer (CMSO) to create the tools necessary for researchers to study All of Us’ participant data. With so much rich and diverse data, All of Us has the power to look for answers to some of our hardest health questions. The resulting marketing strategy and researcher data platform together enable All of Us to gather, study and return health information creating value for participants, researchers, and the larger scientific community.
Adele Luta stands outside the the NIH All of Us Research Program trailer.
Developing more precise communications has positioned All of Us to better reach, enroll and retain its participants. Georgeta helped develop a more participant-centered national communications strategy that crystallized the value of health research for participants and the potential for tailored care and treatments in the future. This participant-focused and data-driven communications strategy now underpins the development of the program’s national and local narrative development, earned, paid and social media.
But that’s only half the story. While Georgeta helped launch communications campaigns to enroll and retain participants, Adele helped simultaneously cultivate a rich and diverse research community by developing the All of Us Researcher Workbench, a platform that offers researchers access to the rich data, workspaces, a Cohort Builder, and an interactive notebook environment. These tools are now available to registered and approved All of Us researcher accounts.
Engaging researchers to use this rich national resource to drive health discoveries is key, and the Workbench can inform thousands of research questions, covering a wide variety of health conditions. Registered and approved researchers have access to a rich data set drawing from electronic health records, biospecimens, surveys, and other measures creating a comprehensive set of biological, environmental, and behavioral data. The goal is for researchers from around the world to come together to answer questions around COVID-19, the value of diverse medical research is more important than ever.
In many ways, Georgeta and Adele’s complementary skill sets reflect the diverse and innovative nature of this ambitious program. From ideation and testimonial storytelling to accelerating medical breakthroughs through a collaborative and custom data platform, Presidential Innovation Fellows worked in partnership with All of Us leadership to showcase the program’s unique and tremendous impact.