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Reaching Consensus on Principles of Stakeholder Engagement in Research
Abstract
Background:
Stakeholder-engaged research is an umbrella term for the types of research that have community, patient, and/or stakeholder engagement, feedback, and bidirectional communication as approaches used in the research process. The level of stakeholder engagement across studies can vary greatly, from minimal engagement to fully collaborative partnerships.
Objectives:
To present the process of reaching consensus among stakeholder and academic experts on the stakeholder engagement principles (EPs) and to identify definitions for each principle.
Methods:
We convened 19 national experts, 18 of whom remained engaged in a five-round Delphi process. The Delphi panel consisted of a broad range of stakeholders (e.g., patients, caregivers, advocacy groups, clinicians, researchers). We used web-based surveys for most rounds (1-3 and 5) and an in-person meeting for round 4. Panelists evaluated EP titles and definitions with a goal of reaching consensus (>80% agreement). Panelists' comments guided modifications, with greater weight given to non-academic stakeholder input.
Conclusions:
EP titles and definitions were modified over five Delphi rounds. The panel reached consensus on eight EPs (dropping four, modifying four, and adding one) and corresponding definitions. The Delphi process allowed for a stakeholder-engaged approach to methodological research. Stakeholder engagement in research is time consuming and requires greater effort but may yield a better, more relevant outcome than more traditional scientist-only processes. This stakeholder-engaged process of reaching consensus on EPs and definitions provides a key initial step for the content validation of a survey tool to examine the level of stakeholder engagement in research studies.
... Their review also presented strategies expected of health researchers at each level. Several articles have also described key principles of stakeholder engagement in research [3,4]. For example, Goodman and colleagues [3] described a consensus-building study that included perspectives from national experts in stakeholder engagement and community stakeholders to identify the primary principles that should underpin stakeholderengagement activities and methodologies. ...
... Several articles have also described key principles of stakeholder engagement in research [3,4]. For example, Goodman and colleagues [3] described a consensus-building study that included perspectives from national experts in stakeholder engagement and community stakeholders to identify the primary principles that should underpin stakeholderengagement activities and methodologies. Harrison and colleagues [4] conducted a review of patient engagement in research. ...
... Harrison and colleagues [4] conducted a review of patient engagement in research. This review identified many similarities to the work described by Goodman and colleagues [3], and also highlighted potential other emerging engagement practices in the field. While there is overlap in the suggested strategy and methodology reported in the described literature, there is still discrepancy and a lack of standardization to guide CEnR teams. ...
Plain English Summary We conducted a study (Screening in High Schools to Identify, Evaluate, and Lower Depression) to understand if an adolescent major depressive disorder screening tool delivered in the school setting aided in the identification of symptoms and treatment. We planned and conducted this study with the guidance of a stakeholders, including adolescents. At the end of each study year, we sent an evaluation survey to stakeholders to understand their experience, such as how appropriately the study included stakeholders and their perspectives. We also surveyed the team leading the study to understand their perspectives about stakeholder involvement. In general, both stakeholders and the study team reported feeling positive about stakeholder involvement; However, some stakeholders felt less involved as the study moved forward, and for some activities stakeholders and study team did not agree on how much the stakeholders were involved in study activities. Additionally, adolescent stakeholders reported low involvement in the study when completing the final evaluation, which, unfortunately, was not captured in the evaluations conducted in earlier study years. By evaluating the experiences of stakeholders, along with gathering perspectives of the study team, we were able to understand how well we involved stakeholders. However, additional questions remain unanswered, such as how best to involve adolescents as stakeholders, and how involving stakeholders impacted the results of our study. Evaluation tools to best understand these impacts are needed across the field of community-engaged research to answer these questions for future studies.
... The original version of the REST was designed to align with 11 engagement principles selected by the PECaD's community advisory board (Disparities Elimination Advisory Committee) based on the community based participatory research and community engagement literature [11,[19][20][21][22][23][24][25][26][27][28][29]. Subsequently, revisions to the measure have been made through a five round Delphi process [15,16,30] and cognitive response testing [31]. The final version examines eight engagement principles (EPs) [16], applicable along the full continuum of engagement activities [15]. ...
... The study was composed of four longitudinal web-based surveys conducted between July 2017 and September 2019 (see Fig. 1). The modified versions of REST presented on sequential surveys correspond to the versions revised through a Delphi process described in detail elsewhere [16,30]. Surveys one through three contained measures that assess dimensions of collaboration, partnership, trust in medical researchers, and engagement used in determining convergent validity. ...
... Surveys one through three contained measures that assess dimensions of collaboration, partnership, trust in medical researchers, and engagement used in determining convergent validity. Finally, we released the fourth survey in January 2019 and it contained the final version of the REST [16,30,31] and asked participants to review the categories of community engagement in research and their corresponding definitions [15] and to classify their project into one of these an electronic screening instrument (Additional file 1: Table S1). We removed participants from this study that screened eligible but completed the survey multiple times, provided invalid telephone numbers or zip codes, or had odd patterns in their responses (N = 95) [41,42]. ...
Background:
The Research Engagement Survey Tool (REST) was developed to examine the level of partner (e.g., patients, caregivers, advocates, clinicians, community members) engagement in research studies. The REST is aligned with eight engagement principles based on the literature and consensus reached through a five round Delphi process. Each of the engagement principles has three-five corresponding items that are assessed on two Likert type scales quantity (how often: never, rarely, sometimes, often, always, not applicable) and quality (how well: poor, fair, good, very good, excellent, not applicable). We conducted a comprehensive validation of the REST. Despite the importance of partner engagement in research, currently no gold standard measure exists.
Methods:
Multiple strategies were employed to validate the REST. Here, we examine the internal consistency of items for each of the eight engagement principles. In addition, we examine the convergent validity of the comprehensive (32-item) REST with other measures (e.g., medical mistrust, Community Engagement in Research Index, Partnership Self-Assessment Tool, Wilder collaboration inventory, Partnership Assessment In community-based Research). We propose two scoring approaches for the REST; one aligned with the engagement principles and the other aligned with levels of community engagement: (1) outreach and education, (2) consultation, (3) cooperation, (4) collaboration, and (5) partnership.
Results:
The REST has strong internal consistency (Cronbach's alpha > 0.75) for each of the eight engagement principals measured on both scales (quality and quantity). The REST had negligible (e.g., medical mistrust, community engagement in research index), low (e.g., Partnership Assessment In community-based Research, Partnership Self-Assessment Tool- benefits scale), and moderate (e.g., Wilder collaboration inventory, Partnership Self-Assessment Tool- synergy scale) statistically significant correlations with other measures based on the Spearman rank correlation coefficient. These results suggest the REST is measuring something similar and correlated to the existing measures, but it captures a different construct (perceived research engagement).
Conclusions:
The REST is a valid and reliable tool to assess research engagement of community health stakeholders in the research process. Valid tools to assess research engagement are necessary to examine the impact of engagement on the scientific process and scientific discovery and move the field of stakeholder engagement from best practices and lessons learned to evidence-based approaches based on empirical data.
... To facilitate acceptance of the important role that stakeholder engagement plays in rigorous science, we must evaluate its impact on research development, implementation, and outcomes [1]. We have developed a tool to measure stakeholder engagement, called the Research Engagement Survey Tool (REST) [2,3]. The utilization of REST as an evaluation tool depends on its dissemination into the hands of research teams and incorporation in the evaluation procedures of projects that might benefit from its use. ...
... The comprehensive (32-item) version of the Research Engagement Survey Tool (REST) examines eight engagement principles (EPs) [2,3], based on the stakeholder engagement literature [4][5][6][7]. The EPs are the following: ...
... 2. Partner input is vital. 3. Partnership sustainability to meet goals and objectives. ...
Introduction
Engagement of relevant stakeholders’ ideas, opinions, and concerns is critical to the success of modern research projects. We have developed a tool to measure stakeholder engagement, called the Research Engagement Survey Tool (REST). The purpose of this paper is to present the implementation and uptake of the stakeholder engagement measure REST among research teams, including the assessment of barriers and facilitating factors for use of the new research engagement measure in practice.
Methods
In this implementation study, project team members participated in baseline and follow-up web-based surveys. Web-based interviews were conducted with a subset of project teams that implemented the REST. On the baseline survey, project teams were asked to provide details about up to three ongoing or recently completed projects, were asked if they agreed with compensation for REST completion, and were asked if they would like to send the survey to stakeholders or would prefer our project team to email their project stakeholders. Follow-up surveys contained questions on reactions to implementing REST and results of REST.
Results
Project team members/researchers who completed the baseline survey (n=86) were mostly female (79%) and Non-Hispanic/Latino(a) White (76%). Those who implemented REST were also mostly female (86%) and Non-Hispanic/Latino(a) White (71%), with an average of 11 years in academic research. About 98% of all participants completing the baseline survey had the capacity to survey partners, while 100% of all teams who implemented REST did. A small portion of respondents indicated the time commitment of REST would be a barrier (29% of baseline survey respondents, 10% of those who implemented REST) and indicated workload would be a barrier (31% of baseline survey respondents, 14% of those who implemented REST).
Discussion
The data presented here indicate that REST implementation is feasible in a volunteer group of ongoing research projects.
... In our previous work, we developed and validated the comprehensive (32-item) Research Engagement Survey Tool (REST) to examine the level of non-academic stakeholder engagement among research partners [1][2][3][4]. The REST is based on eight engagement principles (EPs) from the research literature on community engagement, community-academic partnerships, community-based participatory research, and patient-centered outcomes research [1]. ...
... In our previous work, we developed and validated the comprehensive (32-item) Research Engagement Survey Tool (REST) to examine the level of non-academic stakeholder engagement among research partners [1][2][3][4]. The REST is based on eight engagement principles (EPs) from the research literature on community engagement, community-academic partnerships, community-based participatory research, and patient-centered outcomes research [1]. The tool was refined through a modified Delphi process to reach consensus among community and academic experts on each principle's name and definition in addition to the 3 to 5 items used to assess each principle [1]. ...
... The REST is based on eight engagement principles (EPs) from the research literature on community engagement, community-academic partnerships, community-based participatory research, and patient-centered outcomes research [1]. The tool was refined through a modified Delphi process to reach consensus among community and academic experts on each principle's name and definition in addition to the 3 to 5 items used to assess each principle [1]. ...
The Research Engagement Survey Tool (REST) examines the level of partner engagement in research studies. This study used mixed methods, including web-based surveys (N = 336), a modified Delphi process (N = 18), and cognitive response interviews (N = 16), with convenience sampling to develop and validate a short version of the REST. We conducted factor analysis and calculated internal consistency for the condensed REST. We validated the condensed REST against the comprehensive REST. All analyses were carried out on two scales (quality and quantity) based on Likert-type response options. We examined convergent validity with other measures theoretically associated with the REST (e.g., the Community Engagement Research Index and the Partnership Self-Assessment Tool). This study produced a 9-item condensed version of the REST. The condensed REST loads on 1 factor, has high internal consistency (Cronbach’s alpha = 0.92 for the quantity scale; 0.94 for the quality scale), is significantly correlated (ρ = 0.97; p < 0.001 for both scales) with the comprehensive (32-item) REST, and has negligible, low, and moderate correlation with other measures (e.g., the Partnership Assessment In community-based Research, trust in medical researchers, and the Coalition Self-Assessment Survey). Use of the condensed REST will reduce participant burden and time to complete. This standardized and validated quantitative measure is useful to compare engagement across projects or within a project over time.
... There is a small but growing body of evidence available to guide investigators in engaging stakeholders through the design, conduct, and dissemination stages of research (Forsythe et al., 2019). For example, past research has found wide variability in how stakeholder engagement occurs, as most collaboration has been documented during participant recruitment or dissemination of findings (Goodman et al., 2020). Past studies have also identified predominantly qualitative data-collection processes when assessing and reporting stakeholder engagement (Goodman et al., 2017(Goodman et al., , 2019Martínez et al., 2019bMartínez et al., , 2019c, and that little is known about systematic or data-driven best practices (Goodman et al., 2020). ...
... For example, past research has found wide variability in how stakeholder engagement occurs, as most collaboration has been documented during participant recruitment or dissemination of findings (Goodman et al., 2020). Past studies have also identified predominantly qualitative data-collection processes when assessing and reporting stakeholder engagement (Goodman et al., 2017(Goodman et al., , 2019Martínez et al., 2019bMartínez et al., , 2019c, and that little is known about systematic or data-driven best practices (Goodman et al., 2020). To this end, future evaluations of stakeholder engagement must be reliable and valid, scalable, and applicable to project characteristics, easily implemented by researchers, and equitable for all stakeholders. ...
... Ongoing evaluation of engagement at regular intervals within an ongoing study is important for understanding how stakeholders are engaged and the effectiveness of such strategies (Martínez et al., 2019a(Martínez et al., , 2019b(Martínez et al., , 2019c. Promisingly, there is a growing body of literature supporting the need for assessment of stakeholder engagement, recommendations for its implementation, and emergence of models to capture stakeholder engagement (Boivin et al., 2018;Concannon et al., 2014;Forsythe et al., 2016Forsythe et al., , 2018Forsythe et al., , 2019Goodman et al., 2019Goodman et al., , 2020Hamilton et al., 2017Hamilton et al., , 2018Maccarthy et al., 2019;Ray & Miller, 2017). Taken together, engaging stakeholders in decisionmaking and utilizing regular, systematic evaluations for engagement can support studies that champion authenticity, equity, inclusion, and sustainability in their partnerships. ...
Evaluating engagement in a research partnership can capture the success and impact of the research team-stakeholder partnerships. This article describes the Stakeholder-Centric Instrumentation Process (SCIP), an iterative method to develop an evaluation that reflects research team-stakeholder collective values, language, and priorities. We describe our implementation of the SCIP and provide the Stakeholder-Centric Engagement Evaluation, an evaluation developed in collaboration with our advisory committee. Mean scores across three administrations of the tool remained constant. We monitored responses received from our advisory committee during each administration for changes in scores that guided refinements to our stakeholder engagement strategy. Face validity and acceptability questions showed high satisfaction for the tool's time required to complete, (M = 4.50, SD = 0.86), clarity (M = 4.56, SD = 0.78), and relevance (M = 4.67, SD = 0.49) (maximum score = 5). The SCIP methodology and the Stakeholder-Centric Engagement Tool can be used during study planning and data collection to capture research team-stakeholder collaborations that reflect stakeholder priorities.
... Advances in engagement science and identification of effective stakeholder engagement practices could help address some of these challenges. Stakeholder-engaged research refers to research that includes community, patient, and/or stakeholder engagement, feedback, and bidirectional communication as core principles [30]. Stakeholder engagement is a long-term process that requires time and effort but can be a powerful tool for generating change that can yield better, more relevant outcomes compared to traditional Adaptive intervention design (e.g., sequential multiple assignment randomized trials (SMART)) 78 89 9 ...
... User-centered design -77 16 Passive approaches for data capture (e.g., using ego-centric cameras, speech recognition software to capture exposures, interactions, communications) scientist-only processes [30]. Devoting sufficient attention to stakeholder engagement can improve MLHC intervention research by facilitating improvements in research prioritization, communication, design, and recruitment as well as dissemination and implementation [31]. ...
Adopting a multi-level perspective that considers the many interrelated contexts influencing health could make health communication interventions more effective and equitable. However, despite increasing interest in the use of multi-level approaches, multi-level health communication (MLHC) interventions are infrequently utilized. We therefore sought to conduct a modified Delphi study to better understand how researchers conceptualize MLHC interventions and identify opportunities for advancing MLHC work. Communication and health behavior experts were invited to complete two rounds of surveys about the characteristics, benefits, pitfalls, best practices, barriers, and facilitators of MLHC interventions; the role of technology in facilitating MLHC interventions; and ways to advance MLHC intervention research (46 experts completed the first survey, 44 completed both surveys). Survey data were analyzed using a mixed-methods approach. Panelists reached consensus on two components of the proposed definition of MLHC interventions and also put forward a set of best practices for these interventions. Panelists felt that most health intervention research could benefit from a multi-level approach, and generally agreed that MLHC approaches offered certain advantages over single-level approaches. However, they also expressed concern related to the time, cost, and complexity of MLHC interventions. Although panelists felt that technology could potentially support MLHC interventions, they also recognized the potential for technology to exacerbate disparities. Finally, panelists prioritized a set of methodological advances and practical supports that would be needed to facilitate future MLHC intervention research. The results of this study point to several future directions for the field, including advancing how interactions between levels are assessed, increasing the empirical evidence base demonstrating the advantages of MLHC interventions, and identifying best practices for the use of technology. The findings also suggest that researchers may need additional support to overcome the perceived practical challenges of conducting MLHC interventions.
... Notably, meaningful community engagement (MCE) and collaboration throughout research development, implementation, analysis, and dissemination strengthen the delivery and impact of multilevel interventions. Evidence-based frameworks and principles for MCE involving researchers, community partners, and other stakeholders exist, such as the conceptual model developed by the Organizing Committee for Assessing Meaningful Community Engagement in Health & Health Care Programs & Policies (2022) or the consensus principles developed by Goodman et al. (2020). In addition, formal assessments of MCE, e.g., using the Research Engagement Survey Tool (Goodman et al., 2016), provide valuable yet too seldomly collected insights during multilevel intervention development and evaluation (Hudson et al., 2023;McCloskey et al., 2011). ...
There is consensus about the importance of developing a strong cadre of effective multilevel interventions to eliminate the impacts of unjust social processes, such as structural racism and other harmful social determinants of health (SDOH), on health inequities in the USA. However, the available cadre of rigorously evaluated evidence-based interventions for SDOH mitigation remains underdeveloped relative to the magnitude of historic and current health inequities. The proposed manuscript addresses this gap in two ways: first, by introducing a heuristic framework to inform decisions in multilevel intervention development, study design, and selection of analytic methods and, second, by providing a roadmap for future applications of the framework in multilevel intervention research through an exemplar application using the ongoing NIH-funded evaluation study of the Nurse-Community-Family Partnership (NCFP) intervention. NCFP leverages individual, family, institutional, and system factors to shape COVID-19 mitigation outcomes at the individual and household levels. NCFP takes an approach informed by the heuristic framework to addressing and mitigating unjust social processes and other harmful SDOH. We discuss the application of a two-arm parallel explanatory group randomized trial to evaluate the efficacy of NCFP in improving the primary (COVID-19 testing uptake) and secondary (adoption of COVID-19 control measures, COVID-19 vaccine uptake, mutual aid capacity, etc.) outcomes at the individual and household levels. The analysis approach relies on random-intercept models, and we calculate the variance partitioning coefficient to estimate the extent to which household- and individual-level variables contribute to the outcome, allowing examination of NCFP effects at multiple levels.
... This is consistent with the first of 8 principles of stakeholder engagement described by Goodman et al of a focus on community perspectives and determinants of health. 9 The differing perspectives of the CAB resulted in recommendations that the research team itself would not have decided on their own. This included adding confidentiality language to scripts and recruitment letters, broadening the depictions of people or animated characters in our recruitment materials, or exchanging or adding images of nature scenes which the CAB believed was more reflective of mindfulness. ...
Background
To improve the implementation of clinical trial interventions, there is a need to facilitate communication between key stakeholders and research teams. Community Advisory Boards (CAB) bring together a range of stakeholders not historically included in the research process to inform and work collaboratively with research teams.
Objective
To describe our procedures and processes for (1) integration of a CAB into a pragmatic clinical trial of a telehealth-delivered group mindfulness program for persons with chronic low back pain (cLBP) within primary care, and (2) for the rapid uptake and implementation of CAB recommendations.
Methods
The CAB we convened includes persons with cLBP who have undergone the mindfulness intervention, health care system leadership, advocacy groups, and mindfulness experts. The CAB members underwent a two hour initial training that introduced the research process and the CAB’s role as research partners. The CAB met monthly for 1 hour. We used the Lighting Report method to summarize meetings and share feedback with the research team.
Results
The recommendations of the CAB during the first year they met were divided into recruitment, informed consent, and survey recommendations. The study website also was overhauled based on recommendations, including a more engaging first page with rotating images of nature and testimonials. The language on the website was edited to be more concise and participant-friendly. The CAB recommended talking points to discuss with participants during screening or informed consent about the benefits of participating in research.
Conclusion
We established a CAB that represented diverse perspectives, organizations, and experience with cLBP and mindfulness. The differing perspectives of the CAB resulted in recommendations that the research team itself would not have decided on their own. The Lightning Reports were also an effective way to efficiently communicate the CAB recommendations to the research team.
... Stakeholder engagement is a powerful tool for involving those in research who have lived insights and ideas about ways to improve healthcare. [22] Stakeholders in this project were involved in several ways: ...
There is increasing focus to review the societal impact of research through assessment and research excellence frameworks. These often link to financial and reputational incentives within the academic community. However, timeframes to demonstrate impact using these approaches are often long and are not designed to show benefit to service collaborators who require evidence of improvement and change to their services more immediately. Impacts that are measured this way may also miss out on unintended and positive impacts that occur as by-products of research, or through the ‘ripple effect’ that research may have on practice. Importantly, demonstrating how research makes a difference can improve the research culture in services, and motivations in service partners to become, and stay involved in research. This article describes, and provides access to, a tool called VICTOR (making Visible the ImpaCT Of Research) that was developed by a community of practice involving 12 NHS organisations through blending evidence from the literature, practice and service users. We describe the types of impact that have been collected by VICTOR and explore how collecting impact in this way might help research-practice partnerships and inform research methodologies and may be useful to show impacts alongside, and shortly after the research process.
Supplementary Information
The online version contains supplementary material available at 10.1186/s13104-023-06526-5.
... There are core principles of community engagement and relationship building [132]: focusing on local relevance and determinants of health; acknowledging the community, disseminating findings and knowledge gained to all partners, seeking and using the input of community partners; fostering co-learning, capacity building, and co-benefit; building on strengths and resources within the community; and facilitating equitable partnerships. Progress towards community engagement can be measured using the Research Engagement Survey Tool (REST) [133]. ...
Purpose of Review
We review under-representation of key demographic groups in cardiovascular clinical trials, focusing on lipid-lowering trials. We outline multilevel strategies to recruit and retain diverse populations in cardiovascular trials.
Recent Findings
Barriers to participation in trials occur at the study, participant, health system, sponsor, and policy level, requiring a multilevel approach to effectively increase participation of under-represented groups in research. Increasing the representation of marginalized and under-represented groups in leadership positions in clinical trials can ensure that their perspectives and experiences are considered. Trial design should prioritize patient- and community-indicated needs.
Summary
Women and individuals from racially/ethnically diverse populations remain under-represented in lipid-lowering and other cardiovascular clinical trials relative to their disease burden in the population. This limits the generalizability of trial results to the broader population in clinical practice. Collaboration between community stakeholders, researchers, and community members can facilitate shared learning about trials and build trust.
Psychometrics is a branch of psychology concerned with the measurement of mental attributes, behavior, and performance, in addition to the design and analysis of tests and other instruments. The origins of this field are rooted in the explorations of 18th century scientists concerned with capturing phenomena in empirical ways. Less discussed is the use of tests and assessments to validate racialization, which thrusts persons racialized as Black into the early discourse on psychometrics. Scholars, scientists, and psychometricians racialized as Black have long engaged psychometrics providing two major contributions: infrastructure via personnel and training programs built by persons racialized as Black; and interdisciplinarity, which include disciplinary standards and knowledge production. This commentary names these important figures and describes their contributions to the field of psychometrics.
The frameworks governing Responsible Research and Innovation (RRI) are heterogeneous and constantly evolving and adapting. We build upon this adaptability to explore the potential development of RRI in Research and Technology Organizations. We explore these issues through a case study of nine Spanish technological centers to analyze the level of commitment to the RRI philosophy. We develop a process-maturity framework to evaluate and understand how these organizations engage with RRI principles. The development of the proposed framework has provided the centers involved with a learning experience as regards their developments and practices in this area. The findings allow us to obtain a holistic and comprehensive view of the responsible behavior of these centers in their innovative activity. Likewise, the results allow us to bridge the gap between theoretical concepts and organizational reality at a meso-level. This process maturity framework is intended to be used as an evaluation methodology and management system.
In the traditional clinical research model, patients are typically involved only as participants. However, there has been a shift in recent years highlighting the value and contributions that patients bring as members of the research team, across the clinical research lifecycle. It is becoming increasingly evident that to develop research that is both meaningful to people who have the targeted condition and is feasible, there are important benefits of involving patients in the planning, conduct, and dissemination of research from its earliest stages. In fact, research funders and regulatory agencies are now explicitly encouraging, and sometimes requiring, that patients are engaged as partners in research. Although this approach has become commonplace in some fields of clinical research, it remains the exception in clinical pain research. As such, the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials convened a meeting with patient partners and international representatives from academia, patient advocacy groups, government regulatory agencies, research funding organizations, academic journals, and the biopharmaceutical industry to develop consensus recommendations for advancing patient engagement in all stages of clinical pain research in an effective and purposeful manner. This article summarizes the results of this meeting and offers considerations for meaningful and authentic engagement of patient partners in clinical pain research, including recommendations for representation, timing, continuous engagement, measurement, reporting, and research dissemination.
The water sector in developing countries continues to tackle the emergent challenges of increasing demand for water by the growing population, poor cost recovery from the users, ageing infrastructure and intermittent water supply regime. The national and sub-national governments entrusted the community to tackle these challenges. This led to the emergence of community-managed rural water supply systems where ‘Building Trust with Stakeholders’ is an essential concern for the sustainable functioning of the rural drinking water supply schemes. Trust is developed by engaging stakeholders in decision-making and the overall knowledge-sharing process. However, maintaining and sustaining trust is challenging in the context of the above-mentioned challenges. Amongst all the concerned stakeholders of the water sector, building the service provider's trust with the residential water users is an important aspect.Building upon the given context, this study attempts to understand the trustful relationship among the three key stakeholders of the rural drinking water sector: Scheme operating agencies, village local self-government bodies and their residential water users. The study aims to utilise the learnings from the trust research to empirically understand the factors shaping the trustful relationship between the stakeholders in India's rural drinking water sector.
Study objective:
Because number-based standards are increasingly controversial, the objective of this study was to derive a performance-based competency standard for the image interpretation task of point-of-care ultrasound (POCUS).
Methods:
This was a prospective study. Operating on a clinically-relevant sample of POCUS images, we adapted the Ebel standard-setting method to derive a performance benchmark in 4 diverse pediatric POCUS applications: soft tissue, lung, cardiac and focused assessment with sonography in trauma (FAST). In Phase I (difficulty calibration), cases were categorized into interpretation difficulty terciles (easy, intermediate, hard) using emergency physician-derived data. In Phase II (significance), a 4-person expert panel categorized cases as low, medium, or high clinical significance. In Phase III (standard setting), a 3x3 matrix was created, categorizing cases by difficulty and significance, and a 6-member panel determined acceptable accuracy for each of the 9 cells. An overall competency standard was derived from the weighted sum.
Results:
We obtained data from 379 emergency physicians resulting in 67,093 interpretations and a median of 184 (interquartile range, 154, 190) interpretations per case. There were 78 (19.5%) easy, 272 (68.0%) medium, and 50 (12.5%) hard-to-interpret cases, and 237 (59.3%) low, 65 (16.3%) medium, and 98 (24.5%) cases of high clinical significance across the 4 POCUS applications. The panel determined an overall performance-based competency score of 85.0% for lung, 89.5% for cardiac, 90.5% for soft tissue, and 92.7% for FAST.
Conclusion:
This research provides a transparent chain of evidence that derived clinically relevant competency standards for POCUS image interpretation.
Knowledge user consultation is often limited or omitted in the conduct of scoping reviews. Not including knowledge users within the conduct and reporting of scoping reviews could be due to a lack of guidance or understanding about what consultation requires and the subsequent benefits. Knowledge user engagement in evidence synthesis, including consultation approaches, has many associated benefits, including improved relevance of the research and better dissemination and implementation of research findings. Scoping reviews, however, have not been specifically focused on in terms of research into knowledge user consultation and evidence syntheses. In this paper, we will present JBI's guidance for knowledge user engagement in scoping reviews based on the expert opinion of the JBI Scoping Review Methodology Group. We offer specific guidance on how this can occur and provide information regarding how to report and evaluate knowledge user engagement within scoping reviews. We believe that scoping review authors should embed knowledge user engagement into all scoping reviews and strive towards a co-creation model.
Objective
We aimed to evaluate the racial and ethnic diversity of study participants in recent pediatric cancer communication literature.
Methods
We systematically searched for communication studies in pediatric oncology published between January 2018 and September 2020, limiting analysis to US studies. We considered race and ethnicity as separate categories in our analysis. Two authors screened studies and abstracted characteristics of race and ethnicity reporting and enrollment.
Results
Of 98 articles included in this analysis, many studies failed to report participants’ race (21/98) and ethnicity (40/98). Most studies ascertained race and ethnicity by self-report (51/98); 25 studies did not describe how they ascertained race and ethnicity. White participants were overrepresented in studies relative to the US population (median 80% in studies vs 72% in 2020 US census). Racial and ethnic minorities were underrepresented (Black: 7% vs 14%; Asian: 4% vs 7%; Pacific Islander: 0% vs 0.5%; Native American: 0.5% vs 3%; Hispanic 8% vs 19%).
Conclusion
Communication literature in pediatric oncology underrepresents all racial and ethnic minority populations and is inconsistent in the reporting of race and ethnicity.
Practice Implications
Future work should follow best practices to ensure this literature adequately represents the experiences of all families in pediatric oncology.
IntroductionThe bioethics literature reflects significant interest in and concern with the use of genetic and genomic information in various settings. Because psychiatric treatment and research raises unique ethical, legal, and social issues, we conducted a scoping review of the biomedical, bioethics, and psychology literature regarding the application of genetic and genomic tools to psychiatric disorders (as listed in the DSM-5) and two associated behaviors or symptoms to provide a more detailed overview of the state of the field.Objectives
The primary objective was to examine the available bioethics, biomedical, and psychology literature on applying genetic and genomic tools to psychiatric disorders (other than neurodevelopmental disorders) and two behaviors or symptoms sometimes associated with them (aggression or violence and suicidality) to identify the disorders to which these tools have been applied, the contexts in or purposes for which they have been applied, the ethical, legal, or social concerns associated with those uses, and proposed recommendations for mitigating those concerns.Methods
We used Arksey and O’Malley’s scoping review framework: (1) identify the research question; (2) identify relevant studies; (3) select studies; (4) chart the data; and (5) collate, summarize, and report results (2005). We relied on Levac et al. to inform our application of the framework (2010). The PRISMA extension for scoping reviews checklist informed our reporting (2018). We searched three electronic databases MEDLINE (PubMed), Embase, and PsycInfo (EbscoHost) for peer-reviewed journal articles in English to identify relevant literature. One author screened the initial results and additional screening was done in consultation with other authors. A data extraction form using DSM-5 diagnostic categories (excluding neurodevelopmental disorders) was developed and two authors independently each reviewed approximately half of the articles. Inter-rater reliability was ensured by double-coding approximately 10% of the papers. An additional author independently coded 10% of the articles to audit the data.ResultsIn 365 coded publications, we identified 15 DSM-5 diagnostic categories in addition to the two pre-selected behaviors or symptoms (aggression or violence and suicidality) to which genetic or genomic tools have been applied. We identified 11 settings in or purposes for which these tools were applied. Twenty-two types of ethical, legal, or social concerns associated with the application of genetic or genomic tools to these disorders or behaviors/symptoms were identified along with 13 practices or policies that could mitigate these concerns.Conclusion
Genetic and genomic tools have been applied to a wide range of psychiatric disorders. These raise a range of ethical, legal, and social concerns. Additional research is warranted to better understand the concerns and effective ways to address them. Advancing the literature to identify relevant ethical, legal, or social concerns and solutions to those problems likely requires greater attention to specific applications of genetic or genomic tools to particular psychiatric disorders and associated behaviors/symptoms as well as broad stakeholder engagement.
Context:
Public health professionals, particularly those in state and local health departments, do not always have clear understandings of their roles related to politically controversial public health topics. A process of consensus development among public health professionals that considers the best available evidence may be able to guide decision making and lay out an appropriate course of action.
Approach:
In May 2020, a group of maternal and child health and family planning professionals working in health departments, representatives of schools of public health, and members of affiliated organizations convened to explore values and principles relevant to health departments' engagement in abortion and delineate activities related to abortion that are appropriate for health departments. The convening followed a structured consensus process that included multiple rounds of input and opportunities for feedback and revisions.
Outcomes:
Convening participants came to consensus on principles to guide engagement in activities related to abortion, a set of activities related to abortion that are appropriate for health departments, and next steps to support implementation of such activities.
Lessons learned:
The experience of the convening indicates that consensus processes can be feasible for politically controversial public health topics such as abortion.
Background
Despite recognition of the importance of stakeholder input into research, there is a lack of validated measures to assess how well constituencies are engaged and their input integrated into research design. Measurement theory suggests that a community engagement measure should use clear and simple language and capture important components of underlying constructs, resulting in a valid measure that is accessible to a broad audience.
Objective
The primary objective of this study was to evaluate how community members understood and responded to a measure of community engagement developed to be reliable, valid, easily administered, and broadly usable.
Method
Cognitive response interviews were completed, during which participants described their reactions to items and how they processed them. Participants were asked to interpret item meaning, paraphrase items, and identify difficult or problematic terms and phrases, as well as provide any concerns with response options while responding to 16 of 32 survey items.
Results
The results of the cognitive response interviews of participants (N = 16) suggest concerns about plain language and literacy, clarity of question focus, and the lack of context clues to facilitate processing in response to items querying research experience. Minimal concerns were related to response options. Participants suggested changes in words and terms, as well as item structure.
Conclusion
Qualitative research can improve the validity and accessibility of measures that assess stakeholder experience of community-engaged research. The findings suggest wording and sentence structure changes that improve ability to assess implementation of community engagement and its impact on research outcomes.
Purpose: Patient-reported outcome (PRO) measures offer value for clinicians and researchers, although
priorities and value propositions can conflict. PRO implementation in clinical practice may benefit from
stakeholder engagement methods to align research and clinical practice stakeholder perspectives. The
objective is to demonstrate the use of stakeholder engagement in PRO implementation.
Method: Engaged stakeholders represented researchers and clinical practice representatives from
the SAFTINet practice-based research network (PBRN). A stakeholder engagement process involving
iterative analysis, deliberation, and decision making guided implementation of a medication adherence
PRO measure (the Medication Adherence Survey [MAS]) for patients with hypertension and/or hyperlipidemia.
Results: Over 9 months, 40 of 45 practices (89%) implemented the MAS, collecting 3,247 surveys
(mean � 72, median � 30, range: 0 - 416). Facilitators included: an electronic health record (EHR)
with readily modifiable templates; existing staff, tools and workflows in which the MAS could be integrated
(e.g., health risk appraisals, hypertension-specific visits, care coordinators); and engaged leadership
and quality improvement teams.
Conclusion: Stakeholder engagement appeared useful for promoting PRO measure implementation in
clinical practice, in a way that met the needs of both researchers and clinical practice stakeholders. Limitations
of this approach and opportunities for improving the PRO data collection infrastructure in PBRNs are
discussed. (J Am Board Fam Med 2016;29:102–115.)
Community Networks Program (CNP) centers are required to use a community-based participatory research (CBPR) approach within their specific priority communities. Not all communities are the same and unique contextual factors and collaborators' priorities shape each CBPR partnership. There are also established CBPR and community engagement (CE) principles shown to lead to quality CBPR in any community. However, operationalizing and assessing CBPR principles and partnership outcomes to understand the conditions and processes in CBPR that lead to achieving program and project level goals is relatively new in the science of CBPR.
We sought to describe the development of surveys on adherence to and implementation of CBPR/CE principles at two CNP centers and examine commonalities and differences in program-versus project-level CBPR evaluation.
A case study about the development and application of CBPR/CE principles for the Missouri CNP, Program for the Elimination of Cancer Disparities, and Minnesota CNP, Padres Informados/Jovenes Preparados, surveys was conducted to compare project versus program operationalization of principles. Survey participant demographics were provided by CNP. Specific domains found in CBPR/CE principles were identified and organized under an existing framework to establish a common ground. Operational definitions and the number of survey items were provided for each domain by CNP.
There are distinct differences in operational definitions of CBPR/CE principles at the program and project levels of evaluation. However, commonalities support further research to develop standards for CBPR evaluation across partnerships and at the program and project levels.
Background:
Although academics are trained in research methods, few receive formal training in strategies for implementing equitable community engaged research. Academics and their community partners can benefit from such direction and assistance as they establish and maintain community-based participatory research (CBPR) partnerships. Research partners from the University of Pittsburgh, the Johns Hopkins Center for Injury Research and Policy, and the House of Ruth Maryland, one of the nation's leading domestic violence centers serving Baltimore and the surrounding areas, joined together to design, implement, and evaluate a series of activities to increase local CPBR capacity.
Objectives:
This article provides an overview of process and findings from two CBPR workshops jointly held for academic and community members and explores specific suggestions from the workshop participants about how to put the CBPR principles into practice to promote community engaged research to address intimate partner violence (IPV).
Methods:
Twenty-four academic and community partners with experience addressing IPV participated in the two workshops. Facilitators led discussions based on the core CPBR principles. Participants were asked to interpret those principles, identify actions that could help to put the principles into practice, and discuss challenges related to CBPR approaches for IPV research. Observational notes and transcripts of the discussions and workshop evaluations are summarized.
Results:
The CBPR principles were interpreted and revised through consensus into common language that reflected the group discussion of the core CBPR principles. Workshop participants provided a range of actions for putting the principles into practice and identified the need for sensitivity in relation to IPV research. A majority of participants felt that the workshop generated novel ideas about how they could use CPBR in their own work.
Conclusions:
Translating CBPR principles into common, action-oriented language is a useful first step when building a new academic-community research partnership.
• This project was designed to increase capacity to conduct community-based participatory research (CBPR).
• This article provides an overview of CBPR workshops that we held for academic and community members and explores suggestions from the academic and community workshop participants about how to put the principles of CBPR into practice.
• CBPR is not a method, but rather an approach for guiding and informing future research partnerships.
• Although academics are trained in research methods, few receive formal training in community-engaged research approaches and they and their community partners will benefit from direction and assistance as they establish and maintain their research partnerships.
• Each original CBPR principle was rewritten into language that reflected the group discussion of the principles.
• Participants suggested a wide range of actions for putting the CBPR principles into practice.
• Specific attention was given to the importance of communication, development of structured procedures, and of understanding relevant data.
• A majority felt that the workshops generated ideas about how they could use CPBR in their own work.
• Academics and community members interested in engaging in partnered research.
• Results from this study can be used to facilitate future academic-community research partnerships.
Active participation of community partners in research aspects of community-academic partnered projects is often assumed to have a positive impact on the outcomes of such projects. The value of community engagement in research, however, cannot be empirically determined without good measures of the level of community participation in research activities. Based on our recent evaluation of community-academic partnered projects centered around behavioral health issues, this article uses semistructured interview and survey data to outline two complementary approaches to measuring the level of community participation in research-a "three-model" approach that differentiates between the levels of community participation and a Community Engagement in Research Index (CERI) that offers a multidimensional view of community engagement in the research process. The primary goal of this article is to present and compare these approaches, discuss their strengths and limitations, summarize the lessons learned, and offer directions for future research. We find that whereas the three-model approach is a simple measure of the perception of community participation in research activities, CERI allows for a more nuanced understanding by capturing multiple aspects of such participation. Although additional research is needed to validate these measures, our study makes a significant contribution by illustrating the complexity of measuring community participation in research and the lack of reliability in simple scores offered by the three-model approach.
Mental health research projects address sensitive issues for vulnerable populations and are implemented in complex environments. Community-Based Participatory Research approaches are recommended for health research on vulnerable populations, but little is known about how variation in participation affects outcomes of partnered research projects. We developed a conceptual model demonstrating the impact of community engagement in research on outcomes of partnered projects. We collected data on key constructs from community and academic leaders of 21 sampled partnered research projects in two cycles of an NIMH research center. We conducted empirical analyses to test the model. Our findings suggest that community engagement in research is positively associated with perceived professional development, as well as political and community impact.
We engaged in a community-based participatory research (CBPR) project with the New Mexico Department of Health (DOH) and its 32 county-based health councils.
We report on the process of the collaborative development of an evaluation model that would identify and link council actions to intermediate system change.
We used multiple data sources and interactive, iterative processes to systematically examine and document the health council system including document review, a statewide partnership survey, and multiple meetings with partners.
We highlight lessons and challenges in our CBPR process, including the need for community partners to overcome the fear of evaluation, the use of multiple participatory mechanisms, the value of a linking agent, and understanding multiple data needs.
The time and resources of this participatory evaluation process enabled successful navigation of two important issues: (1) increased attention to statewide accountability of collaborative public health initiatives, and (2) increased expectation by health councils or other community partnerships to have a recognized voice in defining measures for this accountability.
Community engagement in research may enhance a community's ability to address its own health needs and health disparities issues while ensuring that researchers understand community priorities. However, there are researchers with limited understanding of and experience with effective methods of engaging communities. Furthermore, limited guidance is available for peer-review panels on evaluating proposals for research that engages communities.
The National Institutes of Health Director's Council of Public Representatives developed a community engagement framework that includes values, strategies to operationalize each value, and potential outcomes of their use, as well as a peer-review framework for evaluating research that engages communities.
Use of these frameworks for educating researchers to create and sustain authentic community–academic partnerships will increase accountability and equality between the partners.
Although community capacity is a central concern of community development experts, the concept requires clarification. Because of the potential importance of community capacity to health promotion, the Division of Chronic Disease Control and Community Intervention, Centers for Disease Control and Prevention (CDC), convened a symposium in December 1995 with the hope that a consensus might emerge regarding the dimensions that are integral to community capacity. This article describes the dimensions that the symposium participants suggested as central to the construct, including participation and leadership, skills, resources, social and interorganizational networks, sense of community, understanding of community history, community power, community values, and critical reflection. The dimensions are not exhaustive but may serve as a point of departure to extend and refine the construct and to operationalize ways to assess capacity in communities. Peer Reviewed http://deepblue.lib.umich.edu/bitstream/2027.42/67070/2/10.1177_109019819802500303.pdf
Community-based participatory research (CBPR) has emerged in the last decades as a transformative research paradigm that bridges the gap between science and practice through community engagement and social action to increase health equity.
CBPR expands the potential for the translational sciences to develop, implement, and disseminate effective interventions across diverse communities through strategies to redress power imbalances; facilitate mutual benefit among community and academic partners; and promote reciprocal knowledge translation, incorporating community theories into the research.
We identify the barriers and challenges within the intervention and implementation sciences, discuss how CBPR can address these challenges, provide an illustrative research example, and discuss next steps to advance the translational science of CBPR.
Coalitions currently are a popular tool for promoting community-based solutions to health problems, such as alcohol, tobacco, and other drug (ATOD) abuse. Private foundations, granting agencies, and other public health organizations assume that participation of community members in health promotion coalitions will increase the likelihood of program success. This article examines whether key characteristics of coalitions are related to effectiveness as measured by member satisfaction, commitment to the coalition, and the quality of planning efforts. Member survey data from the first year evaluation of an ATOD coalition were analyzed using factor analysis, chi-square, and multiple regression techniques at both the individual and group levels. The results suggest that community leadership, shared decision making, linkages with other organizations, and a positive organizational climate were key determinants of member satisfaction and participation. These same factors were not related to the quality of coalition plans. However, the significance of coalitions for community empowerment and health promotion is discussed.
Models of community empowerment help us understand the process of gaining influence over conditions that matter to people who share neighborhoods, workplaces, experiences, or concerns. Such frameworks can help improve collaborative partnerships for community health and development. First, we outline an interactive model of community empowerment that describes reciprocal influences between personal or group factors and environmental factors in an empowerment process. Second, we describe an iterative framework for the process of empowerment in community partnerships that includes collaborative planning, community action, community change, capacity building, and outcomes, and adaptation, renewal, and institutionalization. Third, we outline activities that are used by community leadership and support organizations to facilitate the process of community empowerment. Fourth, we present case stories of collaborative partnerships for prevention of substance abuse among adolescents to illustrate selected enabling activities. We conclude with a discussion of the challenges and opportunities of facilitating empowerment with collaborative partnerships for community health and development.
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.
Community coalitions are prominent mechanisms for building local capacities to address health and social concerns. Although
there are case studies and descriptive reports on coalitions, there is little empirical information about coalition process
and outcome. This paper describes a case study using a methodology for monitoring and evaluating community health coalitions.
Data are fed back to coalition leaders and members, funding agents, and other relevant audiences as part of the development
process. The monitoring system provides data on eight key measures of coalition process and outcome: the number of members,
planning products, financial resources generated, dollars obtained, volunteers recruited, services provided, community actions
and community changes. Illustrative data are presented for two different community health coalitions. Finally, challenges
and opportunities in evaluating community coalitions are discussed.
Evaluation plays a key role in developing and sustaining community partnerships and coalitions. We recommend focusing on three levels of coalition evaluation that measure (a) processes that sustain and renew coalition infrastructure and function; (b) programs intended to meet target activities, or those that work directly toward the partnership's goals; and (c) changes in health status or the community. A tendency to focus on quick wins and short-term effects of programs may explain why some coalitions are not able to achieve systems and/or health outcomes change. Although measuring community-level or system changes (e.g., improving environmental quality or changing insurance coverage policies) is much more difficult than evaluating program outcomes, it is essential. This article presents challenges that coalition practitioners and evaluators face and concludes with practical resources for evaluation.
Community-based participatory research (CBPR) has emerged in the past decades as an alternative research paradigm, which integrates education and social action to improve health and reduce health disparities. More than a set of research methods, CBPR is an orientation to research that focuses on relationships between academic and community partners, with principles of colearning, mutual benefit, and long-term commitment and incorporates community theories, participation, and practices into the research efforts. As CBPR matures, tensions have become recognized that challenge the mutuality of the research relationship, including issues of power, privilege, participation, community consent, racial and/or ethnic discrimination, and the role of research in social change. This article focuses on these challenges as a dynamic and ever-changing context of the researcher-community relationship, provides examples of these paradoxes from work in tribal communities, discusses the evidence that CBPR reduces disparities, and recommends transforming the culture of academia to strengthen collaborative research relationships.
In this commentary, we discuss the science of stakeholder engagement in research. We propose a classification system with definitions to determine where projects lie on the stakeholder engagement continuum. We discuss the key elements of implementation and evaluation of stakeholder engagement in research posing key questions to consider when doing this work. We commend and critique the work of Hamilton et al. in their multilevel stakeholder engagement in a VA implementation trial of evidence-based quality improvement in women’s health primary care. We also discuss the need for more work in this area to enhance the science of stakeholder engagement in research.
The Community Research Fellows Training program is designed to enhance capacity for community-based participatory research; program participants completed a 15-week, Master of Public Health curriculum. We conducted qualitative, semistructured interviews with 81 participants from two cohorts to evaluate the learning environment and how the program improved participants’ knowledge of public health research. Key areas that provided a conducive learning environment included the once-a-week schedule, faculty and participant diversity, and community-focused homework assignments. Participants discussed how the program enhanced their understanding of the research process and raised awareness of public health–related issues for application in their personal lives, professional occupations, and in their communities. These findings highlight key programmatic elements of a successful public health training program for community residents.
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.
Community-based participatory (CBP) strategies are considered important to efforts to eliminate disparities. This paper outlines how the Program for the Elimination of Cancer Disparities (PECaD) uses CBP strategies as a part of a long-term cancer education, prevention, and control strategy in an urban community. Community partnerships have proved to be vital resources to inform PECaD's agenda and the research practice of academic partners. We begin with a description of PECaD governance and partnership structures. The paper then describes programmatic activities and successes, including efforts to monitor clinical trials, deployment of mammography resources, anti-smoking, and prostate and colorectal cancer (CRC) screening education. The influence of changes in funding priorities, preventive screening policy, and community partner development on the partnership process over time is discussed. PECaD community partners have grown and expanded beyond the Program's mission and developed additional partnerships, resulting in a reevaluation of relationships. The impact of these external and internal changes and pressures on the partnerships are noted. The evolution of the evaluation process and what it has revealed about needed improvements in PECaD activities and operations is presented. A summary of the lessons learned and their implications for CBP practice are provided.
This text offers a comprehensive resource on the theory and application of community based participatory research for health. The authors provide information on a variety of topics including planning and conducting research, working with communities, promoting social change, and core research methods. This book also contains an appendix of tools, guides, checklists, and sample protocols. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
We describe the development, adaptation, and use of evaluation approaches assessing key dimensions of group partnerships. A review of relevant literature describes the rationale for the evaluation of partnership dynamics, and the selection of relevant dimensions for evaluation and assessment. Three case studies are presented to illustrate the use of this evaluation instrument in community-based participatory research partnerships to assess key dimensions of partnership process. The use of evaluation results in self-assessment and partnership development are described and lessons learned in the application of these results are discussed. Finally, we discuss the potential, challenges, and areas for further development of evaluation tools to assess group dynamics in partnership efforts.
To examine the effectiveness of current community-based participatory research (CBPR) clinical trials involving racial and ethnic minorities.
All published peer-reviewed CBPR intervention articles in PubMed and CINAHL databases from January 2003 to May 2010.
We performed a systematic literature review.
Data were extracted on each study's characteristics, community involvement in research, subject recruitment and retention, and intervention effects.
We found 19 articles meeting inclusion criteria. Of these, 14 were published from 2007 to 2010. Articles described some measures of community participation in research with great variability. Although CBPR trials examined a wide range of behavioral and clinical outcomes, such trials had very high success rates in recruiting and retaining minority participants and achieving significant intervention effects.
Significant publication gaps remain between CBPR and other interventional research methods. CBPR may be effective in increasing participation of racial and ethnic minority subjects in research and may be a powerful tool in testing the generalizability of effective interventions among these populations. CBPR holds promise as an approach that may contribute greatly to the study of health care delivery to disadvantaged populations.
Although community-based participatory research (CBPR) shares many of the core values of health education and related fields, the outside researcher embracing this approach to inquiry frequently is confronted with thorny ethical challenges. Following a brief review of the conceptual and historical roots of CBPR, Kelly's ecological principles for community-based research and Jones's three-tiered framework for understanding racism are introduced as useful frameworks for helping explore several key challenges. These are (a) achieving a true "community-driven" agenda; (b) insider-outsider tensions; (c) real and perceived racism; (d) the limitations of "participation"; and (e) issues involving the sharing, ownership, and use of findings for action. Case studies are used in an initial exploration of these topics. Green et al.'s guidelines for appraising CBPR projects then are highlighted as an important tool for helping CBPR partners better address the challenging ethical issues often inherent in this approach.
This article reports the results of a formative evaluation of the first 4 years of the Detroit Community-Academic Urban Research Center (URC), a community-based participatory research partnership that was founded in 1995 with core funding from the Centers for Disease Control and Prevention (CDC). Several organizations are members of this partnership, including a university, six community-based organizations, a city health department, a health care system, and CDC. The Detroit URC is a strong partnership that has accomplished many of its goals, including the receipt of over $11 million in funding for 12 community-based participatory research projects during its initial 4 years. Detroit URC Board members identified a number of facilitating factors for their growth and achievements, such as (1) developing a sound infrastructure and set of processes for making decisions and working together, (2) building trust among partners, (3) garnering committed and active leadership from community partners, and (4) receiving support from CDC. Board members also identified a number of ongoing challenges, including organizational constraints, time pressures, and balancing community interests in interventions and academic research needs. Overall, the Detroit URC represents a partnership approach to identifying community health concerns and implementing potential solutions.
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