BackgroundPatient 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.ObjectivesThe 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.MethodA 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.ResultsOf 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.ConclusionsUnfortunately, 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.

Background Patient participation is highlighted as an important facilitator for patient-centered care. Patient participation organised as patient advisory boards (PABs) is an integral part of health care institutions in Norway. More knowledge is needed on how PAB representatives experience patient engagement (PE) with regard to organisation, influence, and impact. The objective was to describe how PAB representatives experience their tasks, roles, and impact on decision-making processes and service delivery in the setting of rehabilitation institutions. Methods PAB representatives recruited from rehabilitation institutions completed the Norwegian version of the generic Public and Patient Engagement evaluation tool (Norwegian abbreviation EBNOR). EBNOR is tested for reliability and validity with good results and comprises 35 items within four main domains, policies and practices, participatory culture, collaboration, and influence and impact that provide responses about PE-levels. The domain items are scored from “strongly disagree” to “strongly agree” on a five-point scale, in addition to a don’t know category. Items in the domain “influence and impact” are scored from “never” to “all of the time” on a four-point scale. Categorical data were summarized using frequencies and percentages, and response categories were collapsed into three PE-levels: barrier, intermediate, and facilitating level. Free-text responses were analysed according to principles of manifest content analysis, summed up, and used to elaborate the results of the scores. Results Of the 150 contacted PAB representatives, 47 (32%) consented to participate. The results showed that approximately 75% agreed that the organisation as a whole was strengthened as a result of patient participation. Four out of five domains were scored indicating a facilitating level; policies and practices (53%), participatory culture (53%), collaboration and common purpose (37%), and final thoughts (63%). The modal score in the domain influence and impact was in the intermediate PE-level (44%). Of a total of 34 codes from free text analyses, barriers to PE were coded 26 times, and PE facilitators were coded 8 times. Conclusions The findings indicate that most PAB representatives are satisfied with how rehabilitation institutions organise their PAB, but they still experience their impact as limited.

Background: Patient participation is highlighted as an important facilitator for patient-centered care. Patient participation organised as patient advisory boards (PABs) is an integral part of health care institutions in Norway. More knowledge is needed on how PAB representatives experience patient engagement (PE) with regard to organisation, influence, and impact.Objectives: The objective of this study was to describe how PAB representatives engage in PABs with regard to tasks, roles, influence, and impact on decision-making processes and service delivery.Methods: PAB representatives recruited from rehabilitation institutions completed the Norwegian version of the generic Public and Patient Engagement evaluation tool (Norwegian abbreviation EBNOR). EBNOR is tested for reliability and validity with good results and comprises 35 items within four main domains, policies and practices, participatory culture, collaboration, and influence and impact that provide responses about PE-levels. Categorical data were summarized using frequencies and percentages, and response categories were collapsed into three PE-levels: barrier, intermediate, and facilitating level. Free-text responses were analysed according to principles of manifest content analysis, summed up, and used to elaborate the results of the scores.Results: Of the 150 contacted PAB representatives, 47 (32%) consented to participate. The results showed that approximately 75% agreed that the organisation as a whole was strengthened as a result of patient participation. Four out of five main domains were scored indicating a facilitating level; policies and practices (53%), participatory culture (53%), collaboration and common purpose (37%), and final thoughts (63%). The scores in the domain influence and impact were in the intermediate PE-level (44%). Of a total of 34 codes from free text analyses, barriers to PE were coded 26 times, and PE facilitators coded 8 times.Conclusions: The findings indicate that most PAB representatives are satisfied with how rehabilitation institutions organise their PAB, but they still experience their impact as limited.

Introduction Patient participation is increasingly important in individual patient treatment (micro-level), in institutional decisions (meso level) and in decisions on a governmental level (macro level). Nevertheless there is still conflicting evidence about the impact of involving patients in health service development and limited agreement on how to make it happen. This scoping review will map and describe characteristics of meso level approaches to patient participation and facilitators for successful patient participation. We will summarize existing knowledge about patient participation, and the impact on health care services. Methods The present study undertakes a scoping review of research on patient participation in the development and delivery of health care services and implications for quality, following the PRISMA checklist for scooping reviews (PRISMA-ScR). This review will be guided following Arksey and O’Malley’s framework for scoping reviews. All primary studies in English and Scandinavian languages will be eligible. The participants will be patients or healthcare professionals in healthcare services (older than 16 years old). Searches will be conducted in four electronic databases: MEDLINE, EMBASE, Cochrane and PsycINFO, and in grey literature. The final search results will be exported into EndNote, and from EndNote to Covidence to be screened. Final study selection and eligibility criteria will be developed post hoc based on increased familiarity with the literature. The data charting form will be developed and then pilot tested, before results will be reported in a tabular form with a list of factors. Furthermore, the meaning of the results will be summed up in relation to the study objectives. Dissemination and ethics Results will be disseminated through academic journals, conferences and seminars for health care professionals, patient organizations, included health care institutions, and communicated to policymakers. The project is funded by the Dam Foundation and does not require ethical approval.