What is HealthyVOICES?

HealthyVOICES is a qualitative study designed to explore the participation of healthy volunteers in Phase I, pharmaceutical clinical trials. The full project name is “Healthy Volunteers On their Involvement and Clinical Experiences in Studies.” We use the acronym HealthyVOICES to emphasize the importance of our participants’ perceptions of and experiences in clinical trials.

Research typically focuses on why healthy people decide to participate in clinical trials but not how they participate. This project addresses the following questions:

1. How do healthy people view and assess the risks of participating in Phase I studies?
2. How do they decide which studies to enroll in and which ones to avoid?
3. How does their identification as “serial participants,” professional “guinea pigs,” or “lab rats” influence their behavior, including how they take care of their bodies?

Over the course of a three-year period, healthy volunteers who enrolled in the HealthyVOICES project participated in five interviews and maintained “clinical trial diaries” (CTDs), surveys recording their participation in Phase I studies. These two sources of data have allowed us to compare how participants talk about their clinical trial activity in their semi-structured interviews with their actual behavior as represented by their CTDs.

HealthyVOICES was funded by a grant from the National Institute of General Medical Sciences of the National Institutes of Health.