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 factorsincluding 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.

The Search for Improving Value in Canadian Healthcare: Holy Grail or Steady Progress?

“…Other, less complex, interpretations of value are also used, measuring value as the ratio of health benefits to cost (Porter and Teisberg 2006). Canadian interpretations have been broader, and differences in defining and measuring value from healthcare reflect Canada's inclusion of caregivers, providers and provider organizations (Kuluski and Guilcher 2019;Wodchis 2019).…”

Using Data to Move from Volume to Value

“…In their commentary, Kuluski and Guilcher (2019) explain that improving value is not sufficiently progressive and propose person-centred learning health systems (PC-LHSs). The authors' conceptualization of the PC-LHS first recognizes the importance of patients and caregivers beyond their condition and empowers patients and caregivers to express treatment preferences and participate in decision making that affects them.…”

Co-Creating Descriptors and a Definition for Person-Centred Coordinated Health Care: An Action Research Study

“…What is required is a partnership model of care, wherein quality care is scaffolded around the individual underpinned by organisational change [6,7]. This reorientation centres on 'real-world' planning, which integrates structural inequalities of care through meaningful co-design approaches [8,9]. The empowerment of consumers of healthcare in structuring and delivering integrated services is essential for quality, safe and cohesive health systems [10].…”