A US-based patient advocacy team wanted to gather patient perspectives focused on two clinical trials for patients with a chronic respiratory disease. Objectives included:
- Understand which parts of the clinical trial research summaries are most important and least important to patients
- Determine the right balance of information and detail so as to be informative but not overwhelming
- Identify and fix language or visuals that are unclear
Within3 worked with the patient advocacy team to design a 14-day patient advisory board. Six advisors – five patients and one caregiver – answered questions about each clinical trial research summary. During the advisory board, patients were identified by first name only. Moderators were able to see patient responses and provide clarification or ask for additional information where appropriate.
The questions covered study background, methods, and results, as well as how the study might add to the current understanding of respiratory disease treatment and overall impressions of current draft materials. During the session, patients were asked to review documents and images in the virtual engagement platform’s secure document viewer. Questions in the session included What are your impressions of current draft materials? and In your opinion, how does this study add to the current understanding of treatment for this disease?
The session moderator was active throughout the session, which ensured a highly engaged patient group. The patient advocacy team gathered key feedback needed to refine the research summaries and make them more effective for patients. Learnings included:
- Reduce reliance on technical terms whenever possible to avoid confusion
- Add objective information about the pros and cons of treatments
- Reduce the use of acronyms and abbreviations