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Including the Patient’s Voice: CISCRP’s Patient Advisory Board Panels Help Organizations Engage with Patients

As one of our fastest growing service areas, CISCRP’s patient advisory board panels, are used by research sponsors, contract research organizations (CROs), and research centers to solicit feedback and gather valuable insights directly from patients and their support network on a variety of critical clinical study-related areas. These may include assessment of protocol/study design, study synopses, informed consent form design, clinical trial medicine kits, and clinical trial technologies.

CISCRP’s unique position as an independent nonprofit organization allows organizations to gather unbiased, meaningful feedback from patients and their caregivers. CISCRP’s close relationships with various patient advocacy groups, patient communities, and study volunteers also play an important role in composing a diverse panel that best represents the desired target audience. To date CISCRP has conducted more than 30 patient advisory board panels.

CISCRP collaborates closely with organizations to organize these panels. As part of the service, CISCRP will work with an organization to develop a discussion guide and patient-facing materials, select and engage panel members, identify a venue, and moderate the panel meeting. Each panel is designed to allow for open dialogue among participants. The size of each panel typically ranges from 6 to 8 individuals and may include patients from varying disease areas, family members, or patient advocates. Depending on the needs of the organization, these panels can meet once or multiple times. CISCRP encourages in-person meetings to build the strongest rapport with patients and their caregivers.

After the panel meeting, CISCRP prepares a detailed report outlining key patient comments and recommendations to deliver back to the organization. Clinical operations teams then utilize these insights to shape proposed clinical trial designs and strategies within the organization. CISCRP’s Patient Advisory Board Panels are an invaluable approach to engaging study volunteers, enhancing their participation experience, and providing insights for ways to improve study feasibility, recruitment, and retention.

Both patients and sponsor organizations have found the experience to be very enriching. One patient who participated in a CISCRP Advisory Board Panel described his experience, “Our patient advisory board meeting proved to be an invaluable experience. We had a unique opportunity to have a voice in the process of how clinical trials are designed and presented to patients. The facilitators from CISCRP were great. We all felt that our opinions were heard, respected, and appreciated which made this a very empowering experience.” At the same time, sponsors value the opportunity to interact directly with patients and develop a better understanding of the patients’ needs. Lysogene’s Chief Patient Access Officer Samantha Parker explained, “The service provided by CISCRP exceeded expectations. The team is clearly well versed in the complex requirements of drug development and were able to quickly apply their established methodology to a new field. The team mastered the necessary balance of empathy and objectivity whilst running the patient advisory board. I will work with CISCRP again in the future.”

For more information about how to organize a Patient Advisory Board Panel at your organization, please contact Annick Anderson.

By: Leslie Perez

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