In 2020, Duke CTSI joined the Empowering the Participant Voice Research Participant Survey program. Led by Principal Investigator Rhonda Kost, MD, at Rockefeller University, the project aims to develop tools and infrastructure to streamline the collection of research participant feedback and disseminate these tools across the REDCap user community and CTSA Consortium hubs.
Duke is one of six institutions involved in the early implementation of this project. Led at Duke by the CTSI Recruitment Innovation Center team and colleagues, including Dr. Ranee Chatterjee, Jamie Roberts, James Goodrich, Sierra Lindo and Mike Musty, the program aligns with the CTSI’s mission to accelerate scientific discovery, innovation, and translation in clinical research.
“Research participants are critical to closing the gap, or translating, a scientific discovery from the laboratory into proven practices that improve health,” Kost said. “Clinical translational research cannot advance without research participants.”
One of the many challenges clinical researchers can face in their studies is slow enrollment or under enrollment. Additionally, study results may not be as generalizable if diversity among study participants is lacking. An important way to improve enrollment overall and to increase diversity is to get feedback from research participants on how to conduct research better.
In order to develop better tools and standards for study recruitment, Duke and other collaborating universities are working to implement the Empowering the Participant Voice program to distribute the Research Participant Perception Survey, a generalized, validated survey instrument that asks participants about their experiences in clinical research studies.
“The reasons for declining to join, joining, or leaving a research study may be complex and may differ for specific communities based on historical experiences, social, educational or other factors,” Kost said. “Only by asking people about their experiences can we begin to tailor research to enhance those experiences.”
Early implementations of the survey have yielded promising results. At Duke, seven studies have piloted this survey, and the goal is to roll out the survey widely across the institution. These teams have received valuable feedback from participants and have begun implementing interventions based on these responses. Duke research teams interested in participating in the pilot program can reach out to the RIC team to schedule an initial consultation.
“Duke CTSI is one of six Clinical and Translational Science Award sites involved with the EPV project,” said Sierra Lindo, Project Planner with the RIC. “The RIC has worked to engage institutional, community, and patient stakeholders with our goal to implement the Research Participant Perception Survey institution wide.”