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

Abstract

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.

Investigating the Best Practices for Engagement in Remote Participatory Design: Mixed Methods Analysis of 4 Remote Studies With Family Caregivers (Preprint)

“…However, echoing previous research, some research partners in the present study felt the design process was not sufficiently community-partner led, perceiving community partners as providing feedback on the design but not leading design efforts [45]. In order for PD products to be the best possible fit for their intended populations, and for PD to hold positive meaning for community and research partners alike, inclusivity and equality of influence must be prioritized in PD as they are in CBPR [42,46]. It is recommended that research and community partners alike speak candidly about the potential for power differentials present in the broader culture (e.g., among those of different genders, races, disabilities, levels of education, and project roles) to manifest in the remote spaces as they do in physical spaces [42,[47][48][49][50].…”

“…Existing literature in the fields of CBPR and Patient Engagement (PE) highlights the necessity of adequately preparing community partners to engage in research [31,42]. In remote PD, it is not commonplace to provide partners with this thorough background information.…”

“…In order for PD products to be the best possible fit for their intended populations, and for PD to hold positive meaning for community and research partners alike, inclusivity and equality of influence must be prioritized in PD as they are in CBPR [42,46]. It is recommended that research and community partners alike speak candidly about the potential for power differentials present in the broader culture (e.g., among those of different genders, races, disabilities, levels of education, and project roles) to manifest in the remote spaces as they do in physical spaces [42,[47][48][49][50]. Partners should speak frequently about how to create and maintain group structures and norms that combat power imbalances.…”

Current and Future Challenges for Rehabilitation for Inflammatory Arthritis

“…Fostering equality via strengthening patient engagement is a focus area for the European Commission [ 66 ] and is a field under development. Patient engagement can help improve future research and service provision, help shape models of rehabilitation, and enable equal opportunities [ 67 , 68 , 69 ].…”

Study Protocol for a type 2 hybrid effectiveness-implementation evaluation of a multisite community-based participatory project to achieve full childhood immunization coverage in Mozambique and Malawi (Let’s talk about vaccines project)

“…In particular, these approaches may be important for improving full immunization coverage, as new solutions to improve vaccination coverage have been primarily driven by international stakeholders and national government decision-makers (19), while caregivers and health care workers who directly interact with the community have not been engaged in identifying barriers and solutions to address them (19)(20)(21)(22)(23).…”