Participants share information on daily experiences to complement genetic and clinical data and accelerate health research and medical breakthroughs
The All of Us Research Program, part of the National Institutes of Health, has launched a new survey to collect information about various social factors, including neighborhood safety, access to food, experiences with health care, discrimination, and daily work and living environments. Responses from participants will provide researchers key data to better understand the connection between these social environmental factors and the impact on overall health, known as social determinants of health (SDOH).
The All of Us Research Program currently includes more than 350,000 participants and aims to enroll one million or more people who reflect the rich diversity of the United States. Participants share information about their health and genetics, giving approved researchers access to an unprecedented amount of data to advance precision medicine. The program prioritizes diversity among participants and researchers, which is key to uncovering some of our most intractable health disparities.
"Health is about more than our DNA, or what happens at the doctor’s office—it is influenced by a range of factors. Our daily experiences matter to our physical and mental health," said Josh Denny, MD, MS, chief executive officer of All of Us Research Program. "We are committed to creating a more complete view of our participants’ health, to provide researchers the data needed to identify the interacting root causes of diseases and inequities that influence health."
The survey is available in English and Spanish.
Previous research suggests that social determinants of health factors play a role in about 30% to 55% of health outcomes. Learning more about participants’ living environments and life experiences could shed light on why some people stay healthy and others have an increased risk of illness and disease. For example, social connection and a sense of belonging are fundamental human needs. Without these basic connections, feelings of loneliness can arise and trigger more serious health conditions, such as depression, anxiety, and an increased risk of dementia and heart disease, according to the Centers for Disease Control and Prevention.
“We are asking our participants to share these personal details about their lives, so researchers have a more complete understanding of factors that contribute to health and wellbeing,” said Cheryl Clark, MD, ScD, assistant professor of medicine at Harvard Medical School and co-chair of the All of Us Research Program Social Determinants of Health Task Force.
The All of Us Research Program has shown the value of collecting this type of data, stemming from the results of its COVID-19 Participant Experience (COPE) survey, which was completed by nearly 100,000 participants from May 2020 through February 2021, and included information on COVID-19 symptoms, stress levels, social distancing, discrimination, and economic impacts.
The COPE survey helped shed light on the impact of the pandemic. For example, 20% of respondents indicated that they worked more hours during the pandemic and 20% responded that they were not paid at all during the pandemic. Another 10% reported losing their jobs. These responses, coupled with the insights from the dataset’s electronic health records, Fitbit, and other data, present a more complete picture of participants’ experiences during the pandemic.
Participant responses to the new SDOH survey are expected to be available to researchers in the program’s platform for data analysis, called the Researcher Workbench, by mid-2022.
All of Us, the All of Us logo, and “The Future of Health Begins with You” are service marks of the U.S. Department of Health and Human Services.