By Luke Lattanzi | Staff Writer

Baylor has joined the REDCap consortium — an online research platform that streamlines the collection of data in a manner compliant with the Health Insurance Portability and Accountability Act (HIPAA), a federal law that governs national standards on protecting the personal information of medical patients from being disclosed.

Baylor is joining more than 7,000 institutions that use the tool, which was originally developed by Vanderbilt University in 2004. REDCap allows researchers to build and manage online surveys and databases for large-scale studies. Its biggest feature is its compliance with HIPAA, taking the strain off researchers who may have previously had to manually ensure their data collection kept up with the rigors of the law.

“REDCap has applied that to their application and taken some of that heavier lift out of trying to secure and do that on your own, because they’ve built it into the application itself,” Dr. Joshua Kissee, assistant vice president for research technology, said. “So [it’s] a pretty good tool for researchers, especially in the health care space, with respect to a variety of surveys, data collection and then how you manage that data.”

Kissee said REDCap also allows researchers to export the data they collect into statistical analysis programs, such as Statistical Package for Social Sciences (SPSS) and Stata. One of its main features is its electronic consent tool, which allows study participants to easily sign however many consent forms are required, making HIPAA-compliant studies easier for researchers to organize.

Before the addition of REDCap, Baylor primarily relied on Qualtrics — another data management program — for electronic consent forms and other research needs. Qualtrics will still be available to researchers, but Kissee said REDCap will provide another option.

“We don’t have any intention to decommission Qualtrics. It does a great job for many purposes,” Kissee said. “What we’re doing is extending the ability for the research community to have more choice with respect to functionality and software and giving them a home to land research that has human subjects protected, protocols or some type of HIPAA or health care-related security requirement.”

Kissee said the push for Baylor to join REDCap originally came from Dr. Kevin Chambliss, vice provost for research, and Jon Allen, chief information officer. Having recently come to Baylor in July 2023, Kissee said one of his first objectives was to bring Baylor’s implementation of REDCap across the finish line.

“One of my first tasks in joining was to bring that across the finish line with our ITS research technology team,” Kissee said. “Get the information on how to use the service. Get access to the service. Evaluate it and its cost, [and] get that out to the community and finalize some of the contracting that went with it.”

Dr. Paul Harris, creator of REDCap and professor of biomedical informatics and engineering at Vanderbilt, said the idea for REDCap came from the lack of a comprehensive tool that would allow researchers to easily collect data from human subjects in a HIPAA-compliant manner.

“I thought about it [for] a while and thought, ‘You know, if we could create one program that had all of that stuff baked into it, that was easy enough to use, that researchers would want to use it because it solved the rest of their problems,” Harris said. “You may not be caring right now about audit trails, but you care about the validity of your data. You care about the ability to sort of make changes frequently up to the time of launch for a study and not have to pay a software vendor a whole bunch of money for that.”

REDCap also has a built-in project calendar as well as a mobile app for iOS and Android, which can help research coordinators who are currently in the field away from a computer.

One feature Harris is particularly excited about is REDCap’s Electronic Health Record (EHR) integration, collaborating with EHR technology companies like Epic Systems and Oracle Cerner to automatically pull in a patient’s data, thereby minimizing the risk of mistakes that would come with manual data entry.

Harris said REDCap intends to add at least one new feature to the program every month.

Kissee said REDCap is the first of what he hopes will be many new options for Baylor researchers in the coming months and years, intending to align future initiatives with the university’s Illuminate Strategic Plan as well as the planning process for Baylor’s next strategic plan.

“We’re excited about that,” Kissee said. “So we hope to provide choices and options for a research community, because right now, their choice is somewhat limited. And we hope to extend that for them to really enable them to do their best work.”