CISCRP Research Services is on a mission to better understand the evolving needs and preferences of volunteers who participate in clinical research. This has resulted in various innovative collaborations with patients, caregivers and industry stakeholders who are committed to incorporating the patient voice in their drug development processes and improving future participation experiences.
In recent years, CISCRP Research Services has conducted a substantial number of Advisory Boards among both patients and caregivers, which have generated actionable insights on a range of clinical study-related topics such as study design and the informed consent process. Now Research Services is embarking on new initiatives to gain even further insight into the patient experience, with the goal of improving participation and satisfaction with clinical trials.
These include the Patient Clinical Trial Journey Workshops in which CISCRP facilitators lead patients as they recall their “journey” in a clinical trial, from first learning about their study to their post-participation experience. Through the use of interactive and visual exercises, the Workshops allow patients to map their detailed experiences on a large mural, revealing in-depth patient preferences and areas of opportunity to build the ideal journey.
“Being able to participate in the lupus trial journey workshop made me feel a part of helping the greater conversation around clinical trials,” said one patient who was part of a Workshop. “Talking with the people shaping the messaging for my community made me feel hopeful that together we can make strides in finding new therapies for people like me battling this illness.”
The Workshops provide sponsor organizations valuable information about how to improve the clinical trial experience for patients through a visual final report, which include maps of patients’ actual and ideal clinical trial experiences along a participation timeline.
In other initiatives, CISCRP has worked to bring the voice of the patient to sponsor organizations by presenting findings onsite from the latest CISCRP Perceptions & Insights studies, a global survey conducted every other year to monitor public and patient perceptions of clinical research. CISCRP has also facilitated meetings to leverage these findings and improve patient engagement strategies within organizations. These onsite meetings have led to an increased understanding of the attitudes and experiences of patients and how clinical trials could be designed to better recognize and support their specific needs, while minimizing the burdensome aspects of participation.
“We’ve learned so much from patients and their caregivers over the years and that in turn has helped sponsors transform their clinical trials,” said Annick Anderson, director of Research Services. “We’re excited to offer a variety of easy-to-implement patient engagement tools for sponsors and other organizations to help enhance enrollment, retention and compliance measures while delivering a better patient experience.”
Written by Lewis Rice, Senior Editor of Patient Communications