The DCRI is working to develop the science behind the best way to say thank you.
In conjunction with DCRI Research Together™, The Bioethics and Stakeholder Engagement (BASE) Lab housed in Duke’s Department of Population Health Sciences, DCRI Communications, and the Pediatric Trials Network (PTN) are developing lay summaries to share research results with study participants, as well as notes to thank them for their participation.
The DCRI serves as the coordinating center for the PTN, a research network focused on making drugs safer and more effective for children. Several DCRI researchers also act as PTN investigators, including the DCRI’s Kanecia Zimmerman, MD, MPH (pictured left). Developing and studying thank you materials is especially important in the trials Zimmerman conducts as part of PTN because people participate not necessarily for personal benefit, but to advance science to help future critically ill infants.
The DRCI’s Amy Corneli, PhD, MPH, (pictured right) director of The BASE Lab, is leading formative research to inform the lay summaries and thank you notes, together with Zimmerman. Once the materials are complete, the study team will conduct a nested, randomized study to deliver the lay summaries and thank yous and assess how study participants are affected by them.
This study is one example of how The BASE Lab partners with clinical investigators to gather stakeholder input in order to improve the clinical research process, Corneli said. Although there are federal requirements for returning research results, few entities have run studies to consider how to do this affordably and thoughtfully.
The team hopes that providing the lay summaries and thank yous will have lasting impacts, helping to bolster retention and inspiring current participants to consider additional participation in research.
This article originally appeared in the DCRI's 2018-2019 Annual Report. View more articles from this publication.
The BASE Lab
- Identifies areas critical to the successful implementation of clinical research that can be strengthened with data from key research stakeholder groups;
- Gathers essential data through social science research with patients, research participants, and other key stakeholders; and
- Demonstrates how data can inform the planning, conduct, interpretation, and reporting of clinical research.