The Covid-19 Participant Experience (COPE) Survey is in response to the National Institutes of Health Research Program’s need for data during the current pandemic. The survey leverages the more than 325,000 people already known to the program, 80 percent of which are among populations not usually studied. That includes those outside of the typical white, middle-class populations and those 50 miles or more removed from a major medical center.
More than 45,000 people were surveyed in May and nearly 35,000 have been surveyed thus far in June. Many of those have taken the survey both times and will take it again next month to give researchers information on what might be trending.
“The bulk of the survey is really how the pandemic is affecting individuals and spans a wide range of topics from mental health about stress and depression, all the way through to questions about how the pandemic is affecting social lives,” said Scott Sutherland, Vibrent’s vice president of data science.
One of the keys to the survey is that it targets those in the population whose voices aren’t usually heard in terms of biomedical input. “It’s a precision medicine study so it’s about using genetics and medical records data and survey data and other things to put together and understand something about the big picture of how it all correlates to health and genetics,” Sutherland said.
One of the goals of the study is to represent the diversity of the United States and study how adversely different populations are being affected by the pandemic. “If we only study the traditional folks who usually get a chance to sign up for studies, which is typically upper middle class, fairly educated white participants, we’re studying the same people again and again and we don’t have the ability with those results to help the whole diverse populations of the country,” Sutherland said.
Recruitment for the surveys is done through partnerships in communities across the country with organizations that are well connected to the local communities. “The goal is to really engage with these communities so that they’re partners in research,” Sutherland said. “That’s how you keep a long-term study going and gather data over a long period of time. It’s important that it’s a community effort.”
So far, 95 percent of the people who begin the survey, which is about 110 questions and takes on average just over 20 minutes to finish, have completed it. The surveys go out in a number of different ways, including text, email and the traditional snail mail.
“When we use terms such as frontline worker, in the COVID-19 era those workers are primarily on the frontlines of the war on the virus but another front is fought with data,” said Dave Klein, Vibrent’s chief product officer. “Without data, health researchers and scientists don’t have the tools that they need to fight the short game or the long game.”
Sutherland said researchers may unearth from the data ideas that haven’t been considered yet. “It becomes a footprint of history of what was going on in the COVID-19 era and creates novel datasets that are research ready.”
