Patient advisory board, chronic respiratory disease
A US-based patient advocacy team wanted to gather patient perspectives focused on two clinical trials for patients with chronic respiratory disease. Objectives included:
- Understand which parts of the clinical trial research summaries are most important and least necessary to patients
- Determine the right balance of information and detail 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 on the Within3 insights management platform. Six advisors – five patients and one caregiver – answered questions about each clinical trial research summary. During the advisory board, patients were identified by the first name only. Moderators could see patient responses, provide clarification, or ask for additional information where appropriate.
The questions covered the 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 moderator was active throughout the session, ensuring a highly engaged patient group. The patient advocacy team gathered essential feedback needed to refine the research summaries and make them more effective for patients. Learnings included:
- Reduce reliance on overly technical terms whenever possible to avoid potential confusion
- Add objective information about the pros and cons of treatments
- Reduce the use of confusing acronyms and abbreviations