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.

Twelve principles to support caregiver engagement in health care systems and health research

“…A participant asked, "What do you do with the story you are hearing?" Health systems are obsessively measured for performance, with some growing activity on capturing the needs and experiences of patients (and sometimes) family and friend caregivers 25 . The challenge is that after data are collected, it is unclear what (if anything) is done in response to the information captured.…”

“…Baker and colleagues 26 , coined the concept engagement capable environment, comprised of three core processes: enlisting and preparing patients, engaging staff to involve patients and ensuring leadership support and strategic focus. Our 12 principles provide additional fodder to operationalize the processes proposed by Baker and colleagues 26 -for example, how to involve caregivers in engagement work as well as the types of competencies required for caregivers, staff and system leaders 25 . Similar to Baker and colleagues' engagement capable environment concept 26 , the principles presented in our paper-a combination of procedural, cognitive and policy/environmental factors need to operate in tandem to be successful.…”

“…Through his own experience as a health leader, he personally witnesses a shift in culture and understanding when patients and caregivers are invited into the circle, noting that people need to witness it to see its value. Patients and caregivers can see things that we do not see, and can collectively, with providers, managers and researchers, find the answer 25,26 .…”

Experience of Care – Furthering the Patient Experience Agenda

“…In the lead article (Kuluski et al 2017), the authors' recommendations highlight critical components of measuring the patient experience that will help drive the patient experience agenda forward. These recommendations need to be further expanded, explored and addressed to ultimately accelerate the measurement, analysis, improvement and reporting of the patient experience.…”

From Volumes to Valued Experiences: Measurement and the Challenge before Us

“…In the lead paper (Kuluski et al 2017), we made four key recommendations: measuring experiences beyond the healthcare system, including the experience of unpaid (often family) caregivers, measuring experience across sectors and building engagement-capable environments. Our respondents, who spanned multiple jurisdictions across Canada (British Columbia, Alberta, Manitoba, Ontario and New Brunswick) and internationally (UK and Italy), agreed with our recommendations and pushed forward some key ideas.…”