Patient Roles and Patient Knowledge in Learning Health Systems.

Abstract

Learning health systems collect and analyse data on an ongoing basis to make real-time, evidence-informed decisions. Patient involvement is central to learning health systems. In this perspective paper, we describe implications that LHSs' distinguishing features have for patient involvement. These include the need to: build capacity for patients to engage across cycles of data collection and analysis; flesh out the role of patients with respect to collection and analysis of health system data; and create infrastructure to support involvement within learning-intensive environments. We argue that meaningfully involving patients in LHSs requires attention to the relational and epistemological complexity of this endeavour. We conclude with six recommendations for practice, policy, and research.