Toward a Person-Centred Learning Health System: Understanding Value from the Perspectives of Patients and Caregivers.

Abstract

What matters most to people who use healthcare? What matters to their caregivers? How do we use this information to support ongoing quality improvement in the healthcare system? In this paper, we explore three concepts from the current healthcare discourse, intended to drive health system improvements: person-centred care, value-based healthcare and learning health systems. We propose that key tenets from each of these concepts should be combined to create a person-centred learning health system (PC-LHS). We highlight two key points: First, in achieving a PC-LHS, the experiences, priorities and values of patients and their caregivers should be continually collected and fed into data systems to monitor ongoing quality improvement and performance benchmarking. Second, the information collected in determining value must include important contextual factors - including the social determinants of health - as patient health and well-being outcomes will ultimately be shaped by these factors, in addition to health system and disease factors. In summary, improving value for patients and caregivers, by capturing the things that matter most to them, within their life contexts, needs to be part of the continuous quality improvement cycle that lies at the heart of a learning health system.