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In the majority of the cases examined, workers and communities sought to address their grievances through a range of host-country state institutions alongside their claims to transnational NJMs. Chapter 6 explores the conflicting roles of the state in enabling and constraining the ability of NJMs to support community struggles for redress. Non-judicial mechanisms sometimes enlisted useful support from various state agencies, drawing on the distinctive functional capacities and sources of legitimacy that state agencies possess. However, other state agencies also, at times in the same case, attempted to block or at least significantly impede NJM efforts to influence redress processes and outcomes. The chapter shows that because state actors often hold highly ambiguous roles as enablers as well as regulators of business-related human rights violations, opportunities for transnational NJMs to actively collaborate with national governments in addressing grievance claims were usually limited; instead, the ability of NJMs to support human rights redress often depended on indirect or unintended effects of their interactions with the state. Consequently, it was not primarily via efforts to actively collaborate with governments that transnational NJMs contributed to redress, but rather through shifting power balances among competing coalitions of actors engaged with grievance struggles, inside as well as outside the state.
Are non-judicial approaches to remedying business-related human rights violations a good use of the resources invested in them, or a counterproductive distraction from alternative legal or activist pathways to remedy? This chapter outlines the book’s approach to exploring this divisive question, drawing on field-work intensive case studies of human rights grievances across three industrial sectors in Indonesia and India. This introductory chapter launches the book’s argument that while NJMs are seriously limited in their ability to deliver adequate human rights redress, NJMs can nonetheless make small but useful contributions to broader struggles for human rights remedy, never by substituting for binding state-led regulatory and redress processes, but rather by providing entry points through which workers and communities can sometimes mobilise additional resources or sources of leverage in support of their struggles for redress. These findings imply the need for a responsive approach to NJM institutional design and regulatory strategy, in which NJMs are mobilised more explicitly as part of a wider field of struggle to counterbalance some of the entrenched inequalities that buttress recurring patterns of human rights grievances around the world.
Some humanities fields, understanding the growing importance and relevance of public work, have been relatively quick to incorporate teaching public work into their courses. But the arts have been slow to catch up, for example, the relatively recent fields of public musicology and public music theory. However, teaching students how to do public work and why it is important is often removed in favor of course coverage. The reality is that teaching students to do public-facing work can enhance a course’s coverage while also teaching valuable workforce skills, in or out of the arts. At a time when applied careers in the performing and visual arts are dwindling, it is crucial to include the pedagogy of public-facing work in one’s arts classroom to show students what careers are possible using their disciplinary knowledge. In this manifesto, I discuss the importance of teaching public arts methods with a view from my own field, public musicology. As a case study, I will show how teaching public musicology can be both incorporated into stand-alone courses and built into programs, as I have done in the only public musicology undergraduate program in the United States.
The Rapid Acceleration of Diagnostics–Underserved Populations’ COVID-19 Equity Evidence Academy (RADx-UP EA) was a series of virtual conferences hosted between 2021 and 2023 that assembled community members, researchers, and governmental leaders from across the US to discuss and devise ways to promote equity in COVID-19 testing and vaccination. Using community-engaged methodologies in its design and implementation, this series provided a framework and forum for community and academic partners to engage in collaborative idea generation and consensus building during a public health emergency. The ideas and strategies gained during the EAs were disseminated to inform future research and action related to COVID-19. This conference paper highlights the specific engagement approaches used and the themes and recommendations generated. This model and its findings have broad utility beyond RADx-UP and can be used by researchers and practitioners to inform and advance community-engaged research and practice in diverse public health settings.
How might we learn from history in ways that help us imagine a better future? And what role might academic institutions play in making those futures imaginable? These questions informed Rosine Association2.0, a socially engaged art project out of Swarthmore College active from 2021 to 2023. Inspired by a nineteenth-century social project in Philadelphia, Rosine 2.0 formed an interdisciplinary collective of artists, harm reduction organizers, archivists, and activists to co-imagine how harm reduction and mutual aid reduce stigma and increase community care in Philadelphia. We believe that Rosine 2.0 exemplifies the possibilities of public humanities projects that are truly collaborative and transformative. The project went beyond interdisciplinarity by bringing together the fields of archiving, history, and community engagement with communities outside of the College, including curators, artists, and individuals with lived experience. While Swarthmore was the organizing institution, the project existed outside of traditional academic frameworks, creating alternative modes of relationality between and among campus and community members. Each contributed a vital set of skills and perspectives in a networked series of collaborations. The project allowed for rethinking relationships between past and present; between the college and community partners; as well as between faculty, staff, and students in the building of social structures of community care.
The purpose of this study was to document the development of a Community Advisory Board (CAB) to enhance equitable dissemination of research findings within an implementation mapping study to enhance equitable impact of Universal School Meals (USM) through the Designing for Dissemination and Sustainability (D4DS) process.
Methods
The D4DS process comprises 7 key elements to facilitate meaningful dissemination. To accomplish Step 1: Identify Partners, the research team conducted snowball recruitment methods within the local Philadelphia community and with existing connections. To Empathize and Outline the Problem (Step 2) and Understand the Context (Step 3), an interest meeting was held followed by monthly meetings. Our team Confirmed and Co-designed the Product (Step 4) and Developed the Dissemination Plan (Step 5) through collaborative brainstorming sessions. Finally, we started the Iterative Evaluation (Step 6) and Plan for Sustainability (Step 7) by administering a baseline and follow-up survey measuring CAB members’ perceived utility, effectiveness, and sustainability of the board.
Results
The final CAB included 8 members. The co-created dissemination products and plan comprised a 2-page infographic, social media toolkits, and a webinar slide deck, which were disseminated locally by the research team via presentations, websites, and email communication, in spring 2024. Initial findings from baseline and follow-up surveys indicated that CAB members benefited from skill development, compensation, writing credit, and autonomy in dissemination designing.
Conclusions
Sharing power and decision-making enhanced the capacity for local-level dissemination, which is much needed to advance the science of community partnerships.
Climate change is exacerbating the frequency and severity of disasters across Africa, with profound psychological consequences for young people. This paper examines the mental health impacts of climate-related events like droughts, floods and extreme weather on African youth. It explores how climate stresses compound existing societal issues, affecting young people’s well-being. Studies highlighted indicate events strongly associated with negative emotions, anxiety, post-traumatic stress disorder (PTSD) and depression among youth. Vulnerabilities are due to disrupted community contexts and limited support systems. Challenges in providing adequate care are also reviewed, with African health systems grappling with a shortage of professionals and inadequate youth-focused care. This article proposes solutions centred on integrated disaster response, community resilience programmes and specialised youth services. Recommendations involve prioritising mental health education, establishing accessible services and collaborating with local partners. The overall aim is to comprehensively address African youth mental health needs in climate-changing contexts through holistic multi-stakeholder approaches, building coping skills and promoting wellness.
People living with HIV/AIDS (PLWH) often experience co-morbid/co-occurring mental health conditions, e.g., depression, anxiety, and post-traumatic stress disorder (PTSD). In resource-limited settings, where provider shortages are common, task shifting and task sharing (i.e., service delivery by non-professionals) are recommended strategies to promote access to and utilization of mental health and psychosocial support (MHPSS) services among PLWH. We conducted a global scoping review of the literature on MHPSS task shifting and sharing intervention studies for PLWH. Data extracted and summarized included study characteristics, intervention components, whether trauma informed study design, how lay health workers (LHWs) were identified and trained to deliver MHPSS services, and findings related to mental health outcomes. Results indicated that from 2013 through 2022, published intervention research concerning task shifting and sharing approaches was much more prolific in low- and middle-income countries than in high-income countries. MHPSS interventions delivered by a variety of LHWs yielded promising associations on an array of mental health outcomes, including PTSD/trauma and suicidality, though understudied. Underreported details regarding LHW recruitment/selection, compensation, supervision and assessment made it difficult to identify common or best practices. Further research is needed to facilitate the adoption and implementation of MHPSS task shifting and sharing interventions.
Community-engaged research is essential to advance the implementation of evidence-based practices, but engagement quality is rarely assessed. We evaluated community health centers’ (CHCs) experiences partnering with the Implementation Science Center for Cancer Control Equity (ISCCCE) using an online survey of 59 CHC staff. Of 38 respondents (64.4% response rate), most perceived their engagement positively, with over 92% feeling respected by ISCCCE collaborators and perceiving projects as beneficial. Limited staff time and resources were the main challenges identified. This study suggests the utility of gathering feedback to evaluate community research engagement and inform adaptations of research processes to optimize partnership quality.
Edited by
Richard Pinder, Imperial College of Science, Technology and Medicine, London,Christopher-James Harvey, Imperial College of Science, Technology and Medicine, London,Ellen Fallows, British Society of Lifestyle Medicine
Social prescribing is a personalised care approach that connects individuals to community resources for health and wellbeing. There is a rich history of social prescribing initiatives in the UK, including the Peckham experiment and the Bromley-By-Bow Centre. There are six types of social prescribing resources: physical activity, arts and crafts, nature, social support, statutory services, and education. The NHS model for social prescribing includes link workers, referral systems, workforce development, and outcome frameworks. Challenges in measuring the effectiveness of social prescribing are many: differentiating between outputs and outcomes. Economically evaluating social prescribing is complex, and robust evaluations are needed. Principles for future success emphasise quality research and multidisciplinary collaboration. A comprehensive understanding of social prescribing is crucial to unlock its full potential.
Many factors can impact survey completion rates, including survey length, sensitivity of the topics addressed, and clarity of wording. This study used cognitive interviews (CIs), a methodological tool that can aid in developing and refining elements for multi-faceted assessments, and previous survey response patterns to refine, streamline, and increase response rates of RADx-UP Common Data Elements (CDEs) for survey/questionnaire use.
Methods:
Ten previously enrolled CO-CREATE study participants were interviewed between May–June 2023. Interviewees identified CDEs that were “confusing, uncomfortable, and/or not applicable,” along with their reasoning. Interview data were analyzed using a rapid qualitative analytic approach, resulting in a summary matrix categorized by language. For further contextualization, CDE response rates were calculated for the 9147 surveys administered during the CO-CREATE study (May 2021–March 2023) and compared against their survey position.
Results:
Of the 94 CDEs evaluated in the CIs, 20 (21.3%) were flagged by one or more interviewees. Nine (9.6%) English while fourteen (14.9%) Spanish CDEs were flagged by interviewees, with some overlap. Also, CDE response rates differed according to position in the survey, with lower response rates for questions positioned later in the survey. Following review by the research team and the RADx-UP program, 10 English and 15 Spanish were revised, and seven were removed in both languages in the final survey.
Conclusion:
Our findings underscore the importance of integrating community member perspectives to enhance the relevance and clarity of assessment instruments, optimizing the impact of public health research among underrepresented populations.
Community-engaged partnerships (community/academia/government) can play a role in developing effective protocols that address public health crises. Systemic racism, prioritization of money over humanity, and the repression of the local democratic processes through the State of Michigan Emergency Manager Law (Order of Act 439) all played a role in the Flint Water Crisis. Despite decades of collaboration between Flint-based community organizations and academic institutions, ways to navigate such crises and conduct relevant research were ineffective.
Methods:
The Michigan Institute for Clinical and Health Research Community Engagement program at the University of Michigan and Flint’s Community Based Organization Partners co-developed the Research Readiness and Partnership Protocol (R2P2) to provide community-engaged recommendations that inform a rapid research response to public health emergencies. The R2P2 Workgroup conducted an extensive literature review and key interviews to inform protocol development.
Results:
This manuscript provides an overview of the Workgroup’s methods, key interview findings, and the main principles identified. Detailed recommendations and key elements to address prior to and during a crisis will be presented including methods for: establishing and maintaining trust, ensuring transparency, supporting clear communication, establishing a “front door” to academic institutions including a means to “sound the alarm,” addressing academic incentives, achieving equitable resource sharing, and addressing systemic racism.
Conclusion:
This manuscript of community perspectives provides essential elements to develop meaningful community-academic research partnerships to address public health crises impacting communities, particularly communities of color. Furthermore, this work highlights an opportunity for greater acknowledgment and utilization of community-based participatory research (CBPR) by academic institutions.
Little guidance exists for developing institutional policies and procedures that support financial management of community-engaged research, including those related to compensating community partners equitably and efficiently for their expertise and time. To address this gap at our institution, the North Carolina Translational and Clinical Sciences Institute at the University of North Carolina at Chapel Hill (UNC) pursued an iterative, multi-pronged approach to identify and address institutional barriers and facilitators related to community partner compensation for research engagement. This case study describes the approach used to involve research administrative leadership, research teams, and community partners at UNC in the identification of institutional barriers to efficient partner compensation. It also elucidates our efforts to develop policies, processes, and resources to address these barriers. The approaches and solutions described can be adapted by other academic research institutions to enhance compensation processes and to facilitate incorporation of community perspectives into the design and implementation of institutional processes that directly impact their engagement in research.
Heart failure is a complex disorder, that can require hospitalization and specialist care, which patients may experience challenges accessing. In Northamptonshire, an innovative approach to heart failure services was introduced to address these challenges. This study aimed to explore and understand the diffusion dynamics of the heart failure service in Northamptonshire, focusing on adoption and implementation determinants.
Methods:
This qualitative study involved 11 in-depth interviews with four patients, two community carers, one general practitioner, one nurse, one programme director, and two interviews with a community cardiologist. The diffusion of innovation-guided inductive and deductive thematic analyses were used to identify themes and subthemes.
Results:
The community heart failure services incorporated community cardiology clinics and community asset groups. Implementation of these innovations was characterized by competent leadership, positive managerial relationships between community cardiologists, general practitioners, and third-sector professionals, a ‘tension for change’ to reduce hospital admissions, improve access, and dedicated funding (‘slack resources’). The ‘relative advantage’ identified by both service providers and patients was access to specialist care closer to home, rehabilitation, education, and nutrition services. The heart failure innovation aligned with the organizational values of primary care and third-sector organizations, facilitating readiness for adoption and implementation. Challenges emerged from limited management accountabilities, such as inadequate administrative and information technology support, hindering the implementation.
Conclusion:
The heart failure innovation was perceived to improve care, navigating both facilitators and challenges. The diffusion of innovation theory highlighted the importance of governance and the performance of community heart failure services within a complex intervention context.
Older adults have largely been excluded from health research despite bearing a disproportionate disease burden. The Community Engagement Studio (CES) model, initially developed at Vanderbilt University in 2009, allows potential research participants to help shape research to promote greater inclusion. The University of Pittsburgh adapted the CES model for older adults (OA-CES). Tailored specifically to older adults, OA-CES addresses underrepresentation in research by gathering valuable feedback that allows investigators to make research more accessible and relevant to older people. An OA-CES toolkit will help in adapting the model in other research areas to close the gap in research inclusion.
Underrepresentation of diverse populations in medical research undermines generalizability, exacerbates health disparities, and erodes trust in research institutions. This study aimed to identify a suitable survey instrument to measure trust in medical research among Black and Latino communities in Baltimore, Maryland.
Methods:
Based on a literature review, a committee selected two validated instruments for community evaluation: Perceptions of Research Trustworthiness (PoRT) and Trust in Medical Researchers (TiMRs). Both were translated into Spanish through a standardized process. Thirty-four individuals participated in four focus groups (two in English, two in Spanish). Participants reviewed and provided feedback on the instruments’ relevance and clarity. Discussions were recorded, transcribed, and analyzed thematically.
Results:
Initial reactions to the instruments were mixed. While 68% found TiMR easier to complete, 74% preferred PoRT. Key discussion themes included the relevance of the instrument for measuring trust, clarity of the questions, and concerns about reinforcing negative perceptions of research. Participants felt that PoRT better aligned with the research goal of measuring community trust in research, though TiMR was seen as easier to understand. Despite PoRT’s lower reading level, some items were found to be more confusing than TiMR items.
Conclusion:
Community feedback highlighted the need to differentiate trust in medical research, researchers, and institutions. While PoRT and TiMR are acceptable instruments for measuring trust in medical research, refinement of both may be beneficial. Development and validation of instruments in multiple languages is needed to assess community trust in research and inform strategies to improve diverse participation in research.
Community advisory boards (CABs) have traditionally been formed in the context of discrete projects and served to support community protections within the confines of the associated investigation(s). However, as funding bodies increasingly prioritize health equity, CABs have shifted – evolving into long-running organizations with broader scope and value. An emerging cornerstone of these project-independent boards (PICABs) has been the formation of “Research Review Boards” (RRBs). While unified in their goal of promoting community protection and representation in health research, it is unknown to what degree RRBs differ on key features including membership, leadership, service reach, and – crucially – impact. A scoping review was conducted according to PRISMA-ScR guidelines to analyze current practices for RRBs. Of screened articles (n= 1878), 25 were included, corresponding to 24 unique RRBs. Findings indicated overlaps in the stated missions, funding structures, and processes of most RRBs. Differences in membership composition, location, service-reach, leadership structures, evaluation procedures, and perceived impact were evident. Where data is available, RRBs receive positive endorsement from both internal members and external users. Standardization of evaluation procedures is needed to fully quantify impact. Additional challenges to sustainability, communication, and conflicts (e.g., of interest, commitment, and power differentials) merit further consideration.
Each year, I brace for National Hispanic Heritage Month, the intensely rich and active national holiday that takes months to plan, weeks to execute, and days from which to recover. With community partners, we often discuss how to best make use of this public holiday to spotlight our most pressing needs. As an educator, I use this public holiday to show students and colleagues, who are ever-more concerned about curricular alignment with workforce needs, about the importance of my mother tongue and its superpower to bridge communication in our multilingual nation. In the United States, more than 40 million people speak Spanish as their first language and there are more than 50 million speakers of Spanish. We can use this national public holiday to unearth and commemorate more widely – and loudly – that Spanish is also an American language. However, we might also realize that honoring our national Hispanic heritage needs more than one month.
Researchers acknowledge the need to share study results with the patients and their communities, but this is not done consistently due to a plethora of barriers, including a paucity of data to guide best practice approaches in different populations.
Methods:
This study was nested within a large multi-center randomized controlled trial of antimalaria treatment. Data on dissemination preferences were collected at the third-month follow-up visit using a short questionnaire. Data were analyzed using descriptive statistics and subsequently fed into an iterative process with key stakeholders, to develop suitable strategies for result dissemination.
Results:
A total of 960 patients were enrolled in the trial, of whom 84.0% participated in the nested survey. A total of 601 (74.6%) participants indicated interest in receiving trial results. There was significant heterogeneity by study country, with 33.3% (58/174) of patients indicating being interested in Cambodia, 100% (334/334) in Ethiopia, 97.7% (209/214) in Pakistan, but none (0/85) in Indonesia. The preferred method of dissemination varied by site, with community meetings, favored in Ethiopia (79.0%, 264/334) and individualized communication such as a letter (27.6%, 16/58) or phone calls (37.9%, 22/58) in Cambodia. Dissemination strategies were designed with key stakeholders and based on patient preferences but required adaptation to accommodate local logistical challenges.
Conclusion:
The varying preferences observed across different sites underscore that a one-size-fits-all approach is inadequate. Strategies can be tailored to patient preference but require adaptation to accommodate logistical challenges.
Research is about asking and answering questions. One of the most important investments of time for a research investigator should occur before the study starts. This chapter considers the importance of well-defined research questions that have clear boundaries and scope. The specifics of the research methodologies such as sample size and data analysis are essential for high-quality research. Yet less emphasis is placed on the importance of the research question, the feasibility of the study, and the social impact of the investigation. This chapter argues that clinical research should be person- and community-centered. The population, intervention, comparator, outcome, and timeframe (PICOT) framework encompasses content that may be informative for those who use health care. The feasible, interesting, novel, ethical, and relevant (FINER) framework comes closer to focusing on questions and outcomes of importance to study participants. We offer a BASES (biases, awareness, social, equilibrium, specificity) model that builds on the FINER and PICOT systems to place greater emphasis on social context.