The story illustrates how clinical trial participants are using social media to trade insights and comfort — sometimes in ways that can threaten the integrity of a study. Participants in the trial may band together to unblind the study, for example, by determining who is receiving the placebo treatment as opposed to the experimental therapy.
What drew me to this story is how it lays bare a fundamental tension in clinical research. Researchers and participants alike are fuelled by a desire to help others. But there is a point at which their interests diverge: a researcher’s need for clean, interpretable data, for example, can conflict with a participant’s need to benefit from access to a new therapy. To bring this conflict to life, I focused on the personal story of Amber Sapp and her son Garrett as they navigate clinical trials in hopes of finding a treatment for his muscular dystrophy.