COPE survey sheds light on the pandemic’s effects on physical and mental health
Holly Garriock, PhDChief CohortDevelopment Officer
All of Us Research Program, National Institutes of Health
Jordan Smoller, MD, SCDAssociate Chief for Research, Department of Psychiatry, Massachusetts General Hospital Professor of Psychiatry, Harvard Medical School
COVID-19 Participant Experience (COPE) Survey
The All of Us Research Program first released its COVID-19 Participant Experience (COPE) Survey in May 2020 to learn more about changes in participants’ daily life, health, and well-being throughout the pandemic. Between May 2020 and February 2021, a total of six COPE surveys were released, garnering responses from more than 99,000 participants. This data is now available publicly in aggregate form through the Data Browser. Registered researchers can also access a more detailed set of data through the Researcher Workbench, covering topics including stress, mood, discrimination, social distancing, as well as economic and work changes.
The September 2021 data release, which includes the addition of new COPE survey data, represents the most significant infusion of mental health data into the Researcher Workbench so far. Coupled with the virus-related diagnosis and treatment data from more than 214,200 participants’ electronic health records, also in the Researcher Workbench, this data allows All of Us researchers to delve deeply into the wide-reaching physical and emotional impact of the pandemic.
The COPE survey offered a unique opportunity to understand, in real-time, how a large and diverse set of individuals experienced the greatest public health crisis we’ve seen in our lives, including its physical, mental, and emotional impact over time.
– Dr. Holly Garriock
In early 2020, after the emergence of COVID-19 in the U.S., scientific leaders from across the All of Us Research Program, led by Holly Garriock, PhD, and Jordan Smoller, MD, SCD, designed and launched the survey aimed at capturing participants’ experiences and health during the pandemic. They knew that developing this survey would need to be done quickly and longitudinally in order to obtain meaningful feedback. The survey included insights gained from previous mental health studies examining risk and prevention factors, including resilience to adversity and stress, social connection, physical activity, and economic insecurity.
These questions unearth details that cannot be seen by looking solely at an electronic health record, including:
- The experience of living with COVID-19 symptoms
- Details about support systems, physical activity, social connection, anxiety, depression, discrimination, stress, substance abuse, loneliness, and more
A collaborative team drawn from across All of Us and including survey methodologists and user experience experts, launched the COPE survey in under three months.
The program’s scale, scope, and commitment to inclusivity are enabling researchers to gain a robust and meaningful picture of how different communities across the U.S. are coping with this health crisis as it unfolds.
What makes the All of Us program special is the multi-dimensional nature of the data being collected. EHRs and biological information are critical to our understanding of human health but become even more valuable when integrated with qualitative insights about what it’s like to go through different health experiences.
– Dr. Jordan Smoller
With this new survey data available, registered researchers can now bring any number of questions to the dataset, including some that have not been imagined yet. The ability to parse responses through a host of variables – and combine them with biological data – throws open the door to new types of discovery. Researchers will be able to look at the peaks and valleys, evolving stressors, how people reacted during the pandemic, and more.
The COPE survey was the first survey to collect information across the All of Us participant cohort in a repeated way over time. Even before the pandemic, data indicated that more than half of people meet the criteria for a psychiatric disorder over the course of their lifetime. This survey enabled All of Us to explore how health crises impact mental health in real-time and incorporate health equity and social justice issues as they occurred.