Conducting User Experience Interviews during a Clinical Trial

Over the course of two years, the author and colleagues conducted user experience (UX) research as part of two clinical trials. This paper describes the research methodology, the challenges encountered, the rewards, and the lessons learned from the experience. The subject of the clinical trials was a novel treatment for a degenerative disease that has no cure and few successful treatments. The trials involved pairs of patients and caregivers and lasted up to 12 months. The ability to compare the perceived effectiveness of the treatment and changes in quality of life with the clinical endpoints helped guide the design of the treatment regimen, and the experience was rewarding for the UX researchers themselves.