The National Institutes of Health’s (NIH) All of Us Research Program has announced that health data from 20,000 people who have had SARS-CoV-2 is now available to researchers in the US, expanding the program’s dataset to encourage the study of long COVID, social determinants of health (SDOH), and health disparities.
The All of Us Research Program is a large-scale effort to collect and study US health data to support population health across the country. The program began national enrollment in 2018 and aims to gather data from 1 million or more Americans over the next decade. The program’s dataset contains a combination of clinical, genomic, and participant-reported information that researchers can use to study various aspects of health.
The newly expanded COVID-19 dataset currently boasts nearly 6,000 whole-genome sequences and 600 shared Fitbit records from participants with a past coronavirus infection. The dataset also includes custom survey information, which allows researchers to better understand participant experiences throughout the pandemic, in addition to analyzing health outcomes from COVID-19 infection.
One of these surveys is the COVID-19 Participant Experience (COPE) survey, which looks at how the pandemic has affected people’s lives, particularly their mental health. The survey included questions about social distancing, general well-being, mood, stress, and other factors. The updated dataset also includes over 132,600 responses to the Minute Survey on COVID-19 Vaccines, which highlighted participant perspectives on vaccines along with information regarding vaccination status and plans to get the shots.
In addition to the expansion of COVID-19 data, the All of Us program has also added new information on SDOH and health disparities. Much of this information comes from the more than 57,600 responses to the program’s SDOH survey. This survey asked participants about various social and environmental factors of their everyday life, such as neighborhood safety, food and housing security, and experiences with discrimination and stress, which influence health outcomes.
The program’s SDOH data can also be paired with select data from the Census Bureau’s American Community Survey that is linked to the first three digits of participants’ zip codes, along with other program data related to healthcare access, lifestyle, and social support, and discrimination.
“Without a comprehensive view of health, researchers cannot fully understand the underpinnings of health and health equity,” said Cheryl Clark, MD, assistant professor of medicine at Harvard Medical School and co-chair of the All of Us Research Program Social Determinants of Health Task Force, in the press release. “All of Us can change the paradigm of health research by bringing together social, biological, and clinical data to create a more complete picture of the factors influencing our health so that we can begin to imagine a more equitable future.”
In total, the program’s Researcher Workbench, a cloud-based platform with which registered researchers can access All of Us-related datasets and tools, now includes data from more than 372,000 participants, nearly 80 percent of whom identify with groups historically underrepresented in medical research.
This latest dataset update is the second made to the Researcher Workbench this year, following the March release of over 165,000 genotyping arrays and nearly 100,000 whole-genome sequences. The next data release, which will include another large set of genomic data, is scheduled for this winter.