Experience of Care as a Critical Component of Health System Performance Measurement: Recommendations for Moving Forward.

Abstract

People's experiences can provide critical guidance on how to better meet their quality of life and care needs and deploy resources more appropriately. To maximize the utility of experience data and to advance the current debate, we present four recommendations: (1) measuring experiences outside the healthcare system can provide insight into what needs to change within the healthcare system; (2) focusing on patient experience is necessary but insufficient, (family) caregiver insights and experiences require attention and can provide insight into the needs of the patient; (3) moving from "one time/single sector" measurement of experience to iterative, ongoing measurement across sectors better reflects the true lived experience of patients (especially those with complex care needs) and their caregivers; and (4) embedding measurement within engagement-capable environments that adequately resource patients, caregivers, and providers to work together is required to move from collection to meaningful change. Applying these recommendations requires a longer-term vision, shifting from provider-centred to person-centred models of care, and a deep understanding of the structural, cultural, and normative barriers to measuring care experiences.