Engaging patients to improve quality of care: a systematic review

Abstract

BackgroundTo identify the strategies and contextual factors that enable optimal engagement of patients in the design, delivery, and evaluation of health services.MethodsWe searched MEDLINE, EMBASE, CINAHL, Cochrane, Scopus, PsychINFO, Social Science Abstracts, EBSCO, and ISI Web of Science from 1990 to 2016 for empirical studies addressing the active participation of patients, caregivers, or families in the design, delivery and evaluation of health services to improve quality of care. Thematic analysis was used to identify (1) strategies and contextual factors that enable optimal engagement of patients, (2) outcomes of patient engagement, and (3) patients’ experiences of being engaged.ResultsForty-eight studies were included. Strategies and contextual factors that enable patient engagement were thematically grouped and related to techniques to enhance design, recruitment, involvement and leadership action, and those aimed to creating a receptive context. Reported outcomes ranged from educational or tool development and informed policy or planning documents (discrete products) to enhanced care processes or service delivery and governance (care process or structural outcomes). The level of engagement appears to influence the outcomes of service redesign—discrete products largely derived from low-level engagement (consultative unidirectional feedback)—whereas care process or structural outcomes mainly derived from high-level engagement (co-design or partnership strategies). A minority of studies formally evaluated patients’ experiences of the engagement process (n = 12; 25%). While most experiences were positive—increased self-esteem, feeling empowered, or independent—some patients sought greater involvement and felt that their involvement was important but tokenistic, especially when their requests were denied or decisions had already been made.ConclusionsPatient engagement can inform patient and provider education and policies, as well as enhance service delivery and governance. Additional evidence is needed to understand patients’ experiences of the engagement process and whether these outcomes translate into improved quality of care.RegistrationN/A (data extraction completed prior to registration on PROSPERO).Electronic supplementary materialThe online version of this article (10.1186/s13012-018-0784-z) contains supplementary material, which is available to authorized users.

How might patient involvement in healthcare quality improvement efforts work—A realist literature review

“…This realist synthesis suggests a program theory to guide health‐care organizations when involving patients in improving health‐care quality; tailor patient involvement to various QI efforts and contexts, support interaction and partnership within each QI effort, and support behavioural changes that follow QI efforts involving patients—at all organizational levels. These findings may seem self‐evident; however, the gap between health‐care policy and practice remains, with barriers and uncertainty concerning how to best involve patients on different organizational levels . Patient involvement includes many aspects and issues, and the term is not clearly understood, by either patients or healthcare professionals .…”

“…Members of clinical microsystems where patients, and if relevant other adequate actors, are included can actively contribute to healthcare re‐design and improvement . Additionally, the level of involvement influences both explicit and implicit outcomes . To improve and sustain healthcare quality, healthcare professionals should be supported by their organization in partnering with the patients in their clinical microsystem .…”

“…It is an on‐going pursuit of organizational behaviour change in the era of co‐production and co‐design . Further research in this area is warranted …”

“…Therefore, to improve and sustain quality in a health‐care system, key leverage points exist at the clinical microsystem level . Considering the growing interest in active patient involvement in QI, where the patients hold the role as co‐creators, the uncertainty over how best to orchestrate such involvement, and what outcomes to expect on micro‐, meso‐, and macrosystem levels, it is important to understand how approaches to patient involvement might work. The realist literature review approach aims to determine what works for whom, in what circumstances, in what respects and why …”

Supporting the evaluation of public and patient engagement in health system organizations: Results from an implementation research study

“…As citizens, patients and family members take on numerous and expanding advisory and leadership roles in health system organizations, attention has turned to evaluating these efforts. Though the underlying goals for evaluation may differ, there is broad consensus about the need for stronger evidence to understand which engagement approaches work best, in which contexts and with what effects .…”