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Journal ArticleDOI

Systematic Review of Quantitative Measures of Stakeholder Engagement

TL;DR: The utility of stakeholder engagement has been well established in the literature, but there are few examples of measurement and evaluation of the degree to which stakeholders are engaged in these activities and the impact of engagement on positive outcomes.
Abstract: Stakeholder engagement in research has received increasing attention in recent years1, 2 The term “stakeholder engagement” refers to the process of meaningful involvement of those who are engaged in making decisions about programs3 Engaging members of the target population is often key to improving the relevance of the issues studied, the procedures used for study, and the interpretation of outcomes of research studies, health promotion activities, and disease prevention initiatives4, 5, 6 The utility of stakeholder engagement has been well established in the literature,7, 8, 9 but there are few examples of measurement and evaluation of the degree to which stakeholders are engaged in these activities and the impact of engagement on positive outcomes These types of evaluations have been limited in scope, and largely focused on qualitative approaches10, 11, 12, 13, 14 Qualitative methods cannot be easily compared across programs or institutions15 Necessary reliability and validity information describing self‐reported levels of stakeholder engagement are also lacking, and is essential to identifying the impact of engagement on the scientific process and scientific discovery
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TL;DR: Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published.
Abstract: Background Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published. Objective Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making. Methods We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject-matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability. Results In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public. Conclusion A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.

127 citations

Journal ArticleDOI
TL;DR: This article seeks to synthesize the extant literature of systematic reviews, scoping reviews, and other related reviews regarding the context, processes, and research designs and interventions underlying CEnR that optimize its effectiveness.
Abstract: In recent decades, there has been remarkable growth in scholarship examining the usefulness of community-engaged research (CEnR) and community-based participatory research (CBPR) for eliminating health inequities.This article seeks to synthesize the extant literature of systematic reviews, scoping reviews, and other related reviews regarding the context, processes, and research designs and interventions underlying CEnR that optimize its effectiveness. Through a scoping review, we have utilized an empirically derived framework of CBPR to map this literature and identify key findings and priorities for future research. Our study found 100 reviews of CEnR that largely support the CBPR conceptual framework.

69 citations

Journal ArticleDOI
TL;DR: A systematic review examines stakeholder engagement for HIV clinical trials and compares it to the recommendations of the UNAIDS/AVAC Good Participatory Practice (GPP) guidelines.
Abstract: IntroductionStakeholder engagement is an essential component of HIV clinical trials. We define stakeholder engagement as an input by individuals or groups with an interest in HIV clinical trials to inform the design or conduct of said trials. Despite its value, stakeholder engagement to inform HIV clinical trials has not been rigorously examined. The purpose of our systematic review is to examine stakeholder engagement for HIV clinical trials and compare it to the recommendations of the UNAIDS/AVAC Good Participatory Practice (GPP) guidelines.MethodsResults and discussionWe used the PRISMA checklist and identified English language studies describing stakeholder engagement to inform HIV clinical trials. Four databases (PubMed, Ovid, CINAHL and Web of Science) and six journals were searched, with additional studies identified using handsearching and expert input. Two independent reviewers examined citations, abstracts and full texts. Data were extracted on country, engagement methods, stakeholder types and purpose of stakeholder engagement. Based on the GPP guidelines, we examined how frequently stakeholder engagement was conducted to inform clinical trial research question development, protocol development, recruitment, enrolment, follow-up, results and dissemination.Of the 917 citations identified, 108 studies were included in the analysis. Forty-eight studies (44.4%) described stakeholder engagement in high-income countries, thirty (27.8%) in middle-income countries and nine (8.3%) in low-income countries. Fourteen methods for stakeholder engagement were identified, including individual (e.g. interviews) and group (e.g. community advisory boards) strategies. Thirty-five types of stakeholders were engaged, with approximately half of the studies (60; 55.6%) engaging HIV-affected community stakeholders (e.g. people living with HIV, at-risk or related populations of interest). We observed greater frequency of stakeholder engagement to inform protocol development (49 studies; 45.4%) and trial recruitment (47 studies; 43.5%). Fewer studies described stakeholder engagement to inform post-trial processes related to trial results (3; 2.8%) and dissemination (11; 10.2%).ConclusionsOur findings identify important directions for future stakeholder engagement research and suggestions for policy. Most notably, we found that stakeholder engagement was more frequently conducted to inform early stages of HIV clinical trials compared to later stages. In order to meet recommendations established in the GPP guidelines, greater stakeholder engagement across all clinical trial stages is needed.

48 citations

Journal ArticleDOI
TL;DR: A quantitative community engagement measure was developed, aligned with 11 engagement principles (EPs) previously established in the literature, which determines the level of community engagement, which can be correlated with other research outcomes.
Abstract: Although the importance of community engagement in research has been previously established, there are few evidence-based approaches for measuring the level of community engagement in research projects. A quantitative community engagement measure was developed, aligned with 11 engagement principles (EPs) previously established in the literature. The measure has 96 Likert response items; 3-5 quality items and 3-5 quantity items measure each EP. Cronbach's alpha is used to examine the internal consistency of items that measure a single EP. Every EP item group had a Cronbach's alpha > .85, which indicates strong internal consistency for all question groups across both scales (quality and quantity). This information determines the level of community engagement, which can be correlated with other research outcomes.

45 citations

Journal ArticleDOI
TL;DR: CE is time-consuming and often requires an interdisciplinary research team approach, however careful planning of the engagement strategy, including an understanding of the differing layers of stakeholder engagement, and the specific educational needs at each layer, can help in the development of a relationship based on trust between the research team and various stakeholder groups.
Abstract: Genomic biobanking research is undergoing exponential growth in Africa raising a host of legal, ethical and social issues. Given the scientific complexity associated with genomics, there is a growing recognition globally of the importance of science translation and community engagement (CE) for this type of research, as it creates the potential to build relationships, increase trust, improve consent processes and empower local communities. Despite this level of recognition, there is a lack of empirical evidence of the practise and processes for effective CE in genomic biobanking in Africa. To begin to address this vacuum, 17 in-depth face to face interviews were conducted with South African experts in genomic biobanking research and CE to provide insight into the process, benefits and challenges of CE in South Africa. Emerging themes were analysed using a contextualised thematic approach. Several themes emerged concerning the conduct of CE in genomic biobanking research in Africa. Although the literature tends to focus on the local community in CE, respondents in this study described three different layers of stakeholder engagement: community level, peer level and high level. Community level engagement includes potential participants, community advisory boards (CAB) and field workers; peer level engagement includes researchers, biobankers and scientists, while high level engagement includes government officials, funders and policy makers. Although education of each stakeholder layer is important, education of the community layer can be most challenging, due to the complexity of the research and educational levels of stakeholders in this layer. CE is time-consuming and often requires an interdisciplinary research team approach. However careful planning of the engagement strategy, including an understanding of the differing layers of stakeholder engagement, and the specific educational needs at each layer, can help in the development of a relationship based on trust between the research team and various stakeholder groups. Since the community layer often comprises vulnerable populations in low and middle income countries (LMICs), co-development of innovative educational tools on genomic biobanking is essential. CE is clearly a component of a broader process best described as stakeholder engagement.

34 citations


Cites background from "Systematic Review of Quantitative M..."

  • ...The H3Africa Community Engagement Guidelines remain the only CE guidelines for genomic biobanking research that is specific to the African continent [21]....

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  • ...It has been referred to as “the process of meaningful involvement of those who are engaged in making decisions about programs” [21]....

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References
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Journal ArticleDOI
TL;DR: Moher et al. as mentioned in this paper introduce PRISMA, an update of the QUOROM guidelines for reporting systematic reviews and meta-analyses, which is used in this paper.
Abstract: David Moher and colleagues introduce PRISMA, an update of the QUOROM guidelines for reporting systematic reviews and meta-analyses

62,157 citations

Journal ArticleDOI
TL;DR: PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) is introduced, an update of the QUOROM guidelines for reporting systematic reviews and meta-analyses.
Abstract: Moher and colleagues introduce PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses), an update of the QUOROM guidelines for reporting systematic reviews and meta-analyses. Us...

23,203 citations

Journal ArticleDOI
TL;DR: This review provides a synthesis of key principles of community- based research, examines its place within the context of different scientific paradigms, discusses rationales for its use, and explores major challenges and facilitating factors and their implications for conducting effective community-based research aimed at improving the public's health.
Abstract: Community-based research in public health focuses on social, structural, and physical environmental inequities through active involvement of community members, organizational representatives, and researchers in all aspects of the research process. Partners contribute their expertise to enhance understanding of a given phenomenon and to integrate the knowledge gained with action to benefit the community involved. This review provides a synthesis of key principles of community-based research, examines its place within the context of different scientific paradigms, discusses rationales for its use, and explores major challenges and facilitating factors and their implications for conducting effective community-based research aimed at improving the public’s health.

4,806 citations

Journal ArticleDOI
TL;DR: Provide a structured summary including, as applicable, background, objectives, data sources, study eligibility criteria, participants, interventions, study appraisal and synthesis methods, results, limitations, conclusions and implications of key findings, systematic review registration number 2.
Abstract: Provide a structured summary including, as applicable, background, objectives, data sources, study eligibility criteria, participants, interventions, study appraisal and synthesis methods, results, limitations, conclusions and implications of key findings, systematic review registration number 2 Structured summary

3,655 citations

Journal ArticleDOI
TL;DR: In this article, the authors develop and estimate a conceptual model of how different aspects of customers' relationships with the brand community influence their intentions and behaviors, and test their hypotheses by estimating a structural equation model with survey data.
Abstract: The authors develop and estimate a conceptual model of how different aspects of customers' relationships with the brand community influence their intentions and behaviors. The authors describe how identification with the brand community leads to positive consequences, such as greater community engagement, and negative consequences, such as normative community pressure and (ultimately) reactance. They examine the moderating effects of customers' brand knowledge and the brand community's size and test their hypotheses by estimating a structural equation model with survey data from a sample of European car club members.

2,081 citations