Duke will join several other CTSA sites in collaboration on a National Center for Accelerating Clinical Translational Science (NCATS) grant awarded to Rockefeller University. The sites will work together to develop new infrastructure facilitating collection of research participant feedback for widespread adoption.
Led by Principal Investigator Dr. Rhonda G. Kost, Duke will join Vanderbilt University, Johns Hopkins University, Wake Forest University, and the University of Rochester on this project. Part of the work involves building a REDCap platform for a validated research participant perception survey.
“We are excited to collaborate on this multi-site project,” said Ranee Chatterjee Montgomery, MD, Associate Professor of Medicine and Duke site PI. “We hope this will engage our research participants as the partners that they truly are by seeking and acting on their feedback from their research experiences in order to grow and improve Duke’s clinical research program.”
Developing a standardized research participant assessment could mean circumventing common barriers to collecting feedback, such as finding the right tool and accessing infrastructure, resources, training, and analysis tools. By partnering with research participants, the research team will be able to assess participants’ research experiences and improve elements of recruitment and retention.
So far, the Duke site team has worked with patients within the Duke system to gain patient insight and is planning the implementation of the program dashboard. Future steps include working with Duke investigators to fine tune the participant survey and identify study teams that will pilot the REDCap platform.
According to the Duke patient survey, the majority of respondents liked the idea of deploying a validated Research Participant Perceptions Survey. However, other respondents indicated fears, including loss of confidentiality, survey overload, and inequitable distribution.
“We spend a lot of time in the clinical arena ensuring that patients and caregivers are given the opportunity to provide feedback, yet until now we have not had a consistent process to do this for clinical research,” said Schuyler Jones, MD, Associate Professor of Medicine and member of the Duke site team. “Our belief is that in order to make research better, we need direct feedback that is offered to all participants and distributed in a safe and secure manner. We know we can do this broadly at Duke and this will lead to extremely valuable feedback going forward.”