Jill McNair
The Center for Information and Study on Clinical Research Participation, USA
Title: Establishing a standard practice to communicate trial results to study volunteer
Biography
Biography: Jill McNair
Abstract
Studies consistently show that most clinical trial participants want to know what the research communities learned from their participation, yet most never hear from the sponsor or research site staff at all after a clinical trial has concluded. CISCRP has developed and tested a program to provide study volunteers with the results of their clinical trial. Working through our editorial panel of medical and health communications experts as well as patient advocates, CISCRP “translates” the technical results of clinical trials into scientifically accurate, non-promotional lay summaries written at a validated 6th-8th grade reading level. Prepared in printed, electronic and audio formats to accommodate different learning styles, the summaries are disseminated to volunteers via their investigative site as a way to fulfill researchers’ ethical obligation to return trial results, and demonstrate to volunteers that they are respected as true partners in the clinical research process. This presentation will focus on establishing a standard practice to communicate trial results to study volunteers. We will explore the following:
• How lay language summaries fulfill the ethical obligation to return trial results to participants
• Properly translate study results within lay summaries to ensure accurate return of results
• Establish the need for multiple communication methods to return results
• Develop a standard practice for communicating lay language