Dataset Information

Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review.

ABSTRACT:

Objectives

The objectives of this scoping review are to: (1) identify the distribution of and context of the recruitment strategies used, (2) explore the facilitators, benefits, barriers and ethical issues of the identified recruitment strategies, (3) distinguish the varying terminology for involvement (ie, panels, boards, individual) and (4) determine if the individual recruitment strategies used were to address issues of representation or bias.

Design

A scoping review.

Setting

This scoping review follows the framework by Peters et al. Seven electronic databases were explored including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library and PsycINFO (conducted July 2021). The search strategy was codeveloped among the research team, PPI research experts and a faculty librarian. Two independent reviewers screened articles by title and abstract and then at full text based on predetermined criteria.

Primary and secondary outcome measures

Explore recruitment strategies used, facilitators, benefits, barriers and ethical issues of the identified recruitment strategies. Identify terminology for involvement. Explore recruitment strategies used to address issues of representation or bias.

Results

The final sample was from 51 sources. A large portion of the extracted empirical literature had a clinical focus (37%, n=13) but was not a randomised control trial. The most common recruitment strategies used were human networks (78%, n=40), such as word of mouth, foundation affiliation, existing networks, clinics or personal contacts. Within the reviewed literature, there was a lack of discussion pertaining to facilitators, benefits, barriers and ethical considerations of recruitment strategies was apparent. Finally, 41% (n=21) of studies employed or proposed recruitment strategies or considerations to address issues of representation or bias.

Conclusion

We conclude with four key recommendations that researchers can use to better understand appropriate routes to meaningfully involve patients, carers and members of the public to cocreate the evidence informing their care.

SUBMITTER: Gilfoyle M

PROVIDER: S-EPMC10582988 | biostudies-literature | 2023 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review.

Gilfoyle Meghan M Melro Carolyn C Koskinas Elena E Salsberg Jon J

BMJ open 20231013 10

<h4>Objectives</h4>The objectives of this scoping review are to: (1) identify the distribution of and context of the recruitment strategies used, (2) explore the facilitators, benefits, barriers and ethical issues of the identified recruitment strategies, (3) distinguish the varying terminology for involvement (ie, panels, boards, individual) and (4) determine if the individual recruitment strategies used were to address issues of representation or bias.<h4>Design</h4>A scoping review.<h4>Settin ...[more]

PMID: 37832980

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Project description:IntroductionCommunity-based participatory research (CBPR) is a collaborative research approach that equally engages researchers and community stakeholders throughout all steps of the research process to facilitate social change and increase research relevance. Community advisory boards (CABs) are a CBPR tool in which individuals with lived experience and community organisations are integrated into the research process and ensure the work aligns with community priorities. We seek to (1) explore the best practices for the recruitment and engagement of people with lived experiences on CABs and (2) identify the scope of literature on minimising power dynamics between organisations and community members with lived experience who work on CABs together.Methods and analysisThis scoping review will follow the Arksey and O'Malley methodological framework, informed by Levac et al, and will be reported using a PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) diagram. Detailed and robust search strategies have been developed for Embase, Medline and PsychINFO. Grey literature references and reference lists of included articles published between 1 January 1990 and 30 March 2023 will be considered. Two reviewers will independently screen references in two successive stages of title/abstract and full-text screening. Conflicts will be decided by consensus or a third reviewer. Thematic analysis will be applied in three phases: open coding, axial coding and abstraction. Extracted data will be recorded and presented in a tabular format and/or graphical summaries, with a descriptive overview discussing how the research findings relate to the research questions. At this time, a preliminary search of peer-reviewed and grey literature has been conducted. Search results for peer-reviewed literature have been uploaded to Covidence for review and appraisal for relevance.Ethics and disseminationFormal ethics approval is not required for this review. Review findings will inform ongoing and future CBPR community advisory board dynamics.RegistrationThe protocol has been registered prospectively on the Open Science Framework (https://doi.org/10.17605/OSF.IO/QF5D3).

Project description:BackgroundPatient 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.MethodsPAB 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.ResultsOf 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.ConclusionsThe findings indicate that most PAB representatives are satisfied with how rehabilitation institutions organise their PAB, but they still experience their impact as limited.

Dataset Information

Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review.

Objectives

Design

Setting

Primary and secondary outcome measures

Results

Conclusion

Publications

Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review.

Similar Datasets

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