The patient’s voice in the emerging era of participatory medicine

Abstract

Professionalism in any field requires keeping pace with change, and nowhere is it more true than medicine. Knowledge flow has changed dramatically since today’s accreditation standards were developed, and change continues more rapidly than ever. It’s time for a fresh look at how best to achieve care in this altered environment, where valid knowledge may come from the patient as well as from clinician resources: a sociological change driven by technological change. The power structure of the clinical relationship is inevitably altered as constraints on patient knowledge are loosened by the internet, apps, and devices, undermining a paradigm of patients as uninformed recipients of care based on a one-way flow of wisdom from providers. Case after case is presented showing that patients today have generated undeniable value, violating the expectations and assumed best practices of the old model. To understand this sociological (yet scientific) change, this article reviews the role of paradigms in the history of sciences as described in Thomas Kuhn’s landmark book The Structure of Scientific Revolutions and describes how these anomalous patient stories force the conclusion that the traditional paradigm of patients is no longer supportable and a new paradigm is needed. This in turn means our standards of professionalism and appropriate care must be updated, lest we fail to achieve best possible care in our increasingly overburdened system. Our new standard must be to teach clinicians to recognize, welcome, and work with empowered “e-patients” in the new model of participatory medicine.