Multi-unit collaboration leads to Illinois REDCap, a secure, HIPAA-compliant research tool for surveys and more
We’ve done our research. What we’ve learned over the past seven years is that when researchers come to Research IT, they are often in search of an easy and secure way to conduct research participant surveys. In 2019, the Interdisciplinary Health Sciences Institute (IHSI), in collaboration with Research IT and the University Library, launched the Illinois Research Electronic Data Capture, or Illinois REDCap, as a response to the resounding requests of faculty across disciplines at the University of Illinois, Urbana-Champaign (UIUC).
Illinois REDCap is a web application that allows users to build and manage online surveys and project databases for research studies. The program has a point-and-click web interface, which helps researchers build, create, modify, and utilize projects quickly without having to perform any programming or project development. Most importantly, Illinois REDCap is a secure tool that offers web authentication and the ability to manage high risk, protected health information (PHI).
“It has so many more capabilities than people would expect. It’s a survey software, but it can do so much else” explained Michelle Lore, REDCap application specialist at IHSI, and likely the person you will interact with most when you get started on REDCap.
Building an Illinois instance of REDCap allowed IHSI to “provide the researchers with what they needed, which was something that was user-friendly, HIPAA-capable, and something that had a go-to person (Lore), training packages, and support,” said Gillian Snyder, assistant director for research at IHSI.
As the lead REDCap professional on campus, Lore helps users plan their research projects, develops and leads workshops, and maintains the campus knowledge of the service, researching updates and learning how to use and teach new features. She also offers REDCap Consulting Office Hours (virtually for now).
“We also have project build services,” explained Snyder, who oversees IHSI core services including Illinois REDCap. “People can come to Michelle and tell her what they need, and she can put the project together.”
Gillian Snyder Assistant Director for Research, IHSI
“Building and maintaining something in-house let us really provide the researchers with what they needed, which was something that was user-friendly, HIPAA-capable, and something that had a face, resources, and training. It afforded us the opportunity to give campus what it needed.”
REDCap, COVID-19, and the SHIELD program
The ability to handle PHI was one of the key driving forces for this project from its inception. And it paid off in a big way less than a year later, when the SHIELD program tapped REDCap for help with the COVID-19 pandemic response.
“The decision that we made in 2018 [regarding HIPAA-capability], has been critical for supporting the SHIELD program on campus,” said Snyder.
The REDCap team worked closely with researchers in early summer 2020, as they were developing the saliva test, providing a secure option for data collection.
“At first they needed to compare saliva samples to nasal swabs to see how accurate the saliva samples were,” said Lore. She built a survey so the staff at McKinley Health Center could upload and track test results.
Later, during the Fall 2020 semester, the REDCap team developed a consent collection form for the SHIELD program’s application for FDA Emergency Use Authorization. Lore trained testing site employees on how to use the software on tablets, and supervised the first day of data collection at that site, making real-time changes to the program during testing.
The monthly COVID-19 campus survey uses REDCap as well. The survey, developed by Illinois researchers, asks participants about behaviors, and living and working conditions. A team at the National Center for Supercomputing Applications (NCSA) analyzes the data to determine what factors are contributing to people contracting COVID-19 on campus.
“Our involvement in the COVID-19 response has pivoted our roles in some ways. Instead of telling us how they want their research done, they come to us with what they want to accomplish, and ask us to develop the research design and data flow,” said Lore. “People only see a fraction of what [REDCap] can do.”
Surprisingly, individual REDCap use has seen a bump over the past six months. The team has seen some growth as well with the addition of Heather Bernardo, who assists Lore with user questions and project build services.
“People have had to pivot their research,” explained Snyder. “So, some people are using REDCap in a way that they might not have before - which is great for them because they see what’s possible.”
For example, REDCap can collect consent for projects that are more qualitative in nature. With face-to-face meetings out of the picture, researchers cannot collect signatures on a physical form. Instead, participants meet with researchers over Zoom and use REDCap as a secure solution for acquiring consent signatures.
Michelle Lore REDCap Application Specialist
“It has so many more capabilities than people would expect. It’s a survey software, but it can do so much else”
What stands out about the Illinois REDCap acquisition is the incredibly collaborative and passionate path to offering the service. The idea to acquire or build an Illinois-specific REDCap instance started back in 2015, but the path to the service launch in 2019 was far from straight forward. Faculty, primarily in health and social sciences, had been telling IHSI that the need for a service like this was paramount to accelerate their research.
“We explored a couple different options to roll out REDCap and that took time, but there was a sense of urgency,” said Tracy Smith, deputy CIO of innovation and director of Research IT at Technology Services.
While IHSI manages the front end of Illinois REDCap, Technology Services supports the back end, ensuring stability and security for the service.
“We wanted to take the software from a standard application and get it to support PHI at that time,” said David Lewis, a cybersecurity portfolio manager with the privacy and security team. Lewis’ experience assessing applications for high risk data came into play early on.
“This was a first of its kind [for the team], we’ve done a lot of high risk assessments since this, but REDCap was built upon us asking for the first time, ‘how do you assess a cloud-based application for risk?’ It was definitely a learning process.”
“Standing it up in the cloud was really beneficial to Tech Services as well in that it gave us an opportunity to collaborate in new ways which is very important around the cloud,” added Smith. “We learned a lot that we’ve since applied to other cloud endeavors. And that was a nice by-product of this.”
This multi-unit partnership proved a model on how to introduce other cloud services to campus, and how to manage and support those services.
“The launch party in July 2019 was wonderful!” said Snyder. “People from across the years came to celebrate. It has really been a huge effort from multiple people and on multiple fronts. But we all agree it was worth it.”
REDCap is currently free to all UIUC departments and units, and is supported by the Office of the Vice Chancellor for Research and Innovation (OVCRI), IHSI, Research IT, and Research Data Services at the University Library.