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Session 6: The Right to Know: Patients and Clincal Trial Results
Session Chair(s)
Barbara Godlew, RN
Associate Consultant, Scientific Communications, GSC-Bio-Medicines
Eli Lilly and Company, United States
Industry and academia spend valuable time and resources on interpreting regulations and determining how to publicly convey clinical trial data in a patient-friendly, but nonpromotional manner. However, in many cases, clinical development programs and academic research organizations overlook the benefit of engaging patient advocacy organizations to provide insight and constructive criticism in developing understandable summaries containing clinical trial results. This session will focus on the patients’ perspective and experience in receiving trial results, concerns over publicly releasing patient-level data, and thoughts on making clinical trial results understandable to patients and their families.
Speaker(s)
Patient Experience in Receiving Trial Results from Sponsors
Jessica Gilbart, MS
Lupus Foundation of America, United States
Director of Patient Services
Making Clinical Trial Results Understandable for Patients and Their Families
Cheryl J. Jernigan
Susan G. Komen For the Cure, United States
Member, Advocates in Science Steering Committee
Food for Thought: Rare Disorders and Patient-level Data Disclosure
Barbara Godlew, RN
Eli Lilly and Company, United States
Associate Consultant, Scientific Communications, GSC-Bio-Medicines
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