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Regenstrief Institute, Indianapolis, Indiana, US.

IU’s REDCap facilitates international COVID-19 symptom survey

Regenstrief Institute, IU Schools, MSN News, Microsoft Research, and IU REDCap partner to organize and protect survey data to inform public health officials about the pandemic.

Throughout the COVID-19 pandemic, the lack of access to virus testing threatened to undermine public health efforts to stop the spread. That’s why researchers at the Regenstrief Institute and Indiana University’s School of Medicine and Fairbanks School of Public Health partnered with REDCap and MSN News to develop and launch an international COVID-19 symptom survey.

“We sought to build on prior research by conducting an online survey of individuals to enable the collection of information that might augment efforts by public health authorities to identify COVID-19 cases,” said Brian Dixon, the study’s principal investigator and director of Public Health Informatics at the Regenstrief Institute. 

By making the survey available in 12 languages in twenty five countries, the team drew valuable data from communities often overlooked by English-only surveys. “We definitely sought to use REDCap so we could quickly scale the survey,” said Dixon. “We wanted something that could support translation easily, as well as a platform that could handle multiple different surveys in different languages and up to 100,000 survey results. We also needed a platform that was secure and appropriate for sensitive health data. REDCap fits those needs perfectly,” he said.

The team created multiple surveys to capture data from each language market. “The REDCap ETL extension was very handy, allowing us to merge study data together from all of the various language versions into a single database for analysis,” said Dixon, who is an associate professor at IU’s Fairbanks School of Public Health.

Brian Dixon, director of Public Health Informatics, Regenstrief Institute, Principle Investigator

The REDCap ETL extension was very handy, allowing us to merge study data together from all of the various language versions into a single database for analysis,

Brian Dixon

Surveys were developed in collaboration with researchers at Microsoft Research led by Dr. Mary Gray, an adjunct with the Luddy School of Informatics, Computing, and Engineering and a 2020 MacArthur Fellow. The partnership with MSN news aimed to reach a broader audience than from social media networks or doctor’s offices. “Social media outreach is useful, but it often reaches biased populations, such as young adults or individuals who are regular healthcare consumers.” Still, this complex, forward-facing survey came with a learning curve. “Working with a survey that is so public means we had to scale back our data collection to keep the survey concise and quick to complete,” said project coordinator Ashley Wiensch from the Regenstrief Institute. 

As the pandemic progressed, the survey’s general email inbox filled, and researchers responded to concerns about the pandemic from across the globe. “Our research staff spent many hours fielding questions from the public as some individuals asked questions about the virus, and others wanted to argue that public health authorities infringed on their rights,” she continued. At the same time, the team worried about bots, and employed user verification to guard against spam overwhelming and crashing the survey.

In spite of an often chaotic year, researchers agree IU’s REDCap and support team remained a steadfast presence throughout the study. “The REDCap extension saved our study team a lot of time and effort,” said Dixon. “And the support we received from Research Technologies was immeasurable,” he said. 

You can learn more about the research possibilities with IU REDCap by attending a virtual workshop.  Learn more about IU REDCap.