Patient engagement in the development and delivery of healthcare services: a systematic scoping review

Abstract

Background Patient engagement (PE) is required to improve future healthcare services. PE in the development and delivery of healthcare services is likely to be complex but is scarcely described. Objectives The objective of this scoping review was to summarise primary studies on mesolevel PE regarding structure, process and outcomes. More specifically, the aim was to explore barriers and facilitators to successful PE, how persons are engaged in the process and summarise reported consequences. Method A systematic scoping review was conducted, searching the MEDLINE, EMBASE, Cochrane and PsycINFO databases. Primary studies, published between 7 July 2005 and 4 October 2022, were considered for inclusion. Two reviewers extracted data about PE (eg, attributes of PE settings, facilitators and barriers, and outcomes to PE) and the first author coded the extracted data into structural, processual and outcome themes. Results Of 8588 identified records, 37 studies were eligible. Most of the included studies were conducted in Europe (n=19; 51%) and North America (n=13; 35%). Structures that ensure sufficient stakeholder representativeness and PE knowledge through education may facilitate the PE process further, regardless of the environmental setting. Interpersonal relationships with uneven power dynamics were reported as noteworthy processual barriers to meaningful PE, while clearly described roles and tasks were reported as important facilitators. In contrast to hard outcomes with operationalised PE effects, the most noteworthy outcomes of PE were reported as soft processual consequences such as patient representatives improving their self-esteem and feeling valued. Conclusions Unfortunately, there is a dearth of studies exploring hard and operationalised PE outcomes on healthcare services and patients receiving healthcare. The PE process may be facilitated by dedicated finances to PE education and by ensuring sufficient stakeholder representativeness.