Taína E González, BS
Research Enrollment Coordinator I
Partners Center for Personalized Genetic Medicine
Taína E. González, B.S.,1 Norioscar Cabello, B.S.,1 Joey Hua-Phan, B.A.,1 Ainsley Ball, B.A.,1 Cassandra Labarbera,1 Madison R. Walker, M.P.H.,1 Catie Murphy, B.A.,1 Dean C. Xerras, M.D.,3 Scott T. Weiss, M.D.,2 Paulette Denise Chandler M.D., M.P.H.,2 Robert C. Green, M.D.,2 Karmel Choi, P.h.D.,3 Natalie Boutin,1 Alexandra Businger, M.P.H.1, Maria Zahir1, Christine Russo1, Leslie Waters, M.S.W.,1 Shawn N. Murphy, M.D., Ph.D.,1 Jordan W. Smoller, M.D., Sc.D.,3 Cheryl R. Clark, M.D., Sc.D.,2 & Elizabeth W. Karlson, M.D., M.S.1,2 1 Mass General Brigham Personalized Medicine, 2 Brigham and Women’s Hospital, 3 Massachusetts General Hospital
Elizabeth W. Karlson, M.D., M.S.
Research Category: Genomics
Introduction: All of Us (AoU), a longitudinal research program aimed at accelerating and increasing diversity in health care research, has enrolled 367,801 people to date across the U.S and 6610 from BWH. Various data are collected, including surveys (e.g., environment, lifestyle), electronic health records, physical measurements (e.g., height, weight), and biospecimens (e.g., blood, urine). Participants are engaged over 10+ years to complete surveys and learn about their genetic data.
Method: We aimed to describe the: (1) diversity of participants recruited nationally and within BWH, and (2) types of research conducted at BWH that use AoU data.
Results: To date, 80.44% (nationally) and 66.80% (BWH) of participants are under-represented in biomedical research. At BWH, identity by self-report includes: 67.43% White, 6.19% Black or African American, 3.48% Asian, and 3.12% more than one race; 15.52% as Hispanic, Latino, or Spanish; and 63.66% female, 34.30% male, and 0.77% as another gender identity.
Currently, 2402 projects use AoU data. Of the 66 publications to date, 13.64% (n=9) have at least one author affiliated with BWH. Broad research topics include cardiovascular health, mental health, and COVID-19.
Conclusions: Additional recruitment should focus on expanding participant diversity. BWH researchers have contributed significantly to the AoU literature.
All of Us (AoU) is a research program that gathers health information from large groups of people over a period of ten years, with the goal of increasing diversity in health care research. Currently the program has enrolled 367,801 people of different backgrounds across the U.S. Many kinds of data are collected, such as surveys about lifestyle and where you live or grew up. Also, AoU collects health history information, body measurements, such as height and weight, and blood and urine samples. People who are a part of the study are given new surveys and information about their family history, health traits, and risk for diseases.
Across the U.S. and at BWH, many research programs are using this data. BWH has enrolled 6610 people as of August 2022. 67% are white, 16% are Latino, 6% are Black, % are Asian, and 3% are more than one race. 64% are women, 34% are men, and 1% identify as another gender. Nine scientific papers were published with at least one BWH author. These papers studied many conditions such as heart diseases, mental health, and COVID-19. Ways to increase and maintain diversity in AoU should be explored. BWH researchers have helped diversify research.