Patient voices provide invaluable input and insight into clinical research study designs and communications, and in the study conduct experience. A growing number of research sponsors, contract research organizations (CROs), and research centers are turning to patient advisory board panels to solicit feedback directly from patients and their support network on a variety of critical clinical study-related areas.
CISCRP is uniquely positioned to organize and facilitate Patient Advisory Board programs. As a nonprofit organization, CISCRP brings objectivity and neutrality, unprecedented knowledge about the clinical research process, and extensive experience collaborating with patient advocacy groups and with patients directly.
“Our patient advisory board panels are typically held in-person at a convenient location and can be engaged for a single meeting,” noted Julia Farides-Mitchell, Program Manager, “or as an ongoing entity available throughout the year.”
CISCRP works closely with sponsor companies and contract research organizations to define the purpose and role of each patient advisory board. Next, CISCRP collaborates with a patient advocacy group or engages patients directly. None of the patient members of the board are currently participating in a clinical trial. During the board meetings, CISCRP facilitates panel discussions and compiles suggestions and insights. The patient advisory boards focus on a range of areas including study designs; schedule of assessment feasibility; informed consent forms and the review process; new technology solutions and approaches supporting study participation; and study positioning and communications. All panel members provide their consent to participate. The advisory board panel process, discussion guide and materials are reviewed by an ethical review committee.
Recently, CISCRP convened a Patient Advisory Board in New York City to better understand the needs of patients with an autoimmune disorder. Seven patients were brought in from around the country to provide feedback on the study design, on patient-facing study materials for an ongoing trial and a possible extension study, and at home methods for administering the study drug. Patients shared invaluable insights and were incredibly grateful for the opportunity to provide their feedback.
“Patients were hopeful that their input would lead to the adoption of more patient-centered approaches that were discussed during the meeting.” Julia said of this most recent meeting, “They felt that their opinions matter and that they were respected as the true experts on what it means to live with their disease and to participate in a clinical trial.”
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