The Louisiana Public Health Institute (LPHI) and the University of California San Francisco (UCSF) launched a patient-driven study to analyze how COVID-19-related policies affect individuals and the spread of the disease. The study is made possible through a funding award of $4,979,798 from the Patient-Centered Outcomes Research Institute (PCORI).
The two-year collaborative project consists of two data collection efforts. The first occurs through the COVID-19 Citizen Science mobile app-based study developed by Mark Pletcher, MD, MPH, Jeff Olgin, MD, and Gregory Marcus, MD, of the University of California, San Francisco. The mobile app delivers short daily and weekly surveys to gain insight into respondents’ physical and mental health, behaviors, and experience with local policies related to slowing the spread of the novel coronavirus.
The second project also analyzes electronic health records and insurance claims data from those who consent. It pulls data from the National Patient-Centered Clinical Research Network (PCORnet) and other health networks with robust electronic health record systems to ensure a diverse patient population.
The two data sets together will shed light on which policies are most effective at reducing harm from the COVID-19 pandemic.
“The goal of our COVID-19 Policy Study is to get information to policymakers about how people are currently suffering and what they need during this difficult time,” said Pletcher, a professor in the Department of Epidemiology and Biostatistics and the director of informatics and research innovation at the UCSF Clinical and Translational Science Institute. “Policymakers need better information so they can make better policy decisions in the face of the evolving pandemic.”
While policymakers have daily COVID-19 case data, there is no organized way for them to hear from their constituents about the impact of their policies. This research will gather self-reported data on how shelter-in-place and reopening strategies affect participants’ finances, employment, and housing. It will also study how access to testing and contact tracing vary across the rural and urban, Black, Latinx, and white communities. The study includes community partnerships and paid advertising to drive recruitment among Black and Latinx communities, which have been disproportionately affected by COVID-19.
“The information we collect will allow us to see how the different state-wide COVID-19 response strategies affect individuals living in those states,” said Thomas Carton, chief data officer at LPHI and principal investigator of the Research Action for Health Network (REACHnet), a member network of PCORnet. “The information from the surveys, cross-referenced with electronic health record and insurance claims data, allows us to investigate the range of impact by gender, race, socioeconomic status, and more, to further understand health disparities highlighted by the pandemic.”
While the mobile app is open to all adults, the PCORnet-specific effort will recruit participants from seven U.S. states with diverse policies, demographics, and disease-transmission dynamics. Survey data on behaviors, beliefs, testing, and symptoms of COVID-19 will be linked, for participants who consent, to electronic health records and claims data. The policy research will take place in California, Florida, Louisiana, Mississippi, New York, Oklahoma, and Texas.
Study design, data collection, recruitment, and dissemination strategies are shaped in part by an advisory board that includes Citizen Scientists representing vulnerable communities and policymakers from states, counties, and health systems for whom these results will be immediately actionable.
Those interested in participating in the COVID-19 Citizen Science Study can do so by visiting https://eureka.app.link/covid19 (if prompted, enter the study key: covid) or by texting “COVID” to 41411.