Patient informaticians: Turning patient voice into patient action.

Abstract

Historically, patients have held a passive role within healthcare, seeking consultation from and following the directions of providers and their care teams. However, changes in culture, education, and technology are making it possible for patients to proactively develop and implement technologies and approaches for health management and quality of life enhancement—to act as patient informaticians. This perspective reviews the societal shifts facilitating the evolution of patient informaticians as discrete actors within healthcare, describes the work of patient informaticians and how this work differs from that of other patient roles (eg, patient advocates), considers examples of patient informaticians in action, and defines patient informaticians’ position relative to the healthcare system.