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Abstract Background Despite the importance of community involvement in research, little formal training in community outreach and engagement (COE) is offered to cancer research trainees. A collaboration between the Office of COE and the Office of Cancer Research Training and Education Coordination (CRTEC) at the Sidney Kimmel Comprehensive Cancer Center at Jefferson led to the COE-CRTEC Trainee Working Group, a unique program in which trainees in cancer research each created a novel COE initiative. Methods Four cancer research trainees were selected to serve as COE Program Liaisons (CPLs), each aligned with one of the four cancer center research programs. Each CPL developed, implemented, and evaluated a project that enhanced the bidirectional relationship between their research and the community. Trainees were provided a modest budget, support from the Office of COE, and a requirement to complete the project within one academic year. Results Projects included a cancer education seminar for older adults at a senior center, a prostate cancer education and screening event at a predominantly African American church, a video demonstrating a day in the life of a skin cancer researcher, and a podcast that featured SKCCC investigators answering research questions from community members. Conclusion Students who would not typically be exposed to COE training gained experience developing, implementing, and evaluating community-based initiatives. Projects were diverse in topic and approach, reflecting the diversity of the trainees and the community. Allowing trainees, those who are the next generation of cancer researchers, to design community-based research may lead to more patient-centered research in the future.

Abstract Background The Dance and Health project aimed to promote public involvement in health research. Public involvement leads worked with project partner community groups, Aakash Odedra Dance Company and Moving Together, to develop a community engagement project with people living in low-socioeconomic areas/deprivation and diverse ethnic minority groups. Dance and Health included a weekly 60-min dance class and 30 min of facilitated health science discussion, that could either be a public involvement discussion for a research project, an activity about a particular biomedical research theme or ongoing discussions with a visiting researcher. The goal of this paper is to explore the impact of the Dance and Health project on the social capital of participants and provide key learnings on how to engage and build partnerships with people from underserved groups in health research contexts. Methods Qualitative interviews and focus groups were completed which explored participant and dance tutor experiences in community venues. Participants were aged between 22 and 90, most were female and were from Asian ethnic minority groups and White British groups living in deprived neighbourhoods in Leicester. Qualitative data were analysed using qualitative content analysis. Results The responses to the Dance and Health project were positive across all the focus groups. Central themes identified were Feedback on the Project, Motivation to Exercise, Criticism of the NHS, Mental Wellbeing, Engagement in a Post Pandemic New Normal, Accessibility and Inclusivity, Empowerment and Building Social Capital. Discussion The focus groups evidenced that the project had broad impact. Participants expressed empowerment and ownership and described a range of social capital enrichment generated through the project including networks and friendships, access to the institutional resource of health science, and the opportunity to engage with a health and leisure activity that was valued and meaningful.

Abstract Background Most rural populations experience significant health disadvantage. Community-engaged research can facilitate research activities towards addressing health issues of priority to local communities. Connecting scholars with community based frontline practices that are addressing local health and medical needs helps establish a robust pipeline for research that can inform gaps in health provision. Rural Health Projects (RHPs) are conducted as part of the Doctor of Medicine program at the University of Queensland. This study aims to describe the geographic coverage of RHPs, the health topic areas covered and the different types of RHP research activities conducted. It also provides meaningful insight of the health priorities for local rural communities in Queensland, Australia. Methods This study conducted a retrospective review of RHPs conducted between 2011 and 2021 in rural and remote Australian communities. Descriptive analyses were used to describe RHP locations by their geographical classification and disease/research categorisation using the International Classification of Diseases and Related Health Problems – 10th Revision (ICD-10) codes and the Human Research Classification System (HRCS) categories. Results There were a total of 2806 eligible RHPs conducted between 2011 and 2021, predominantly in Queensland (n = 2728, 97·2%). These were mostly conducted in small rural towns (under 5,000 population, n = 1044, 37·2%) or other rural towns up to 15,000 population (n = 842, 30·0%). Projects mostly addressed individual care needs (n = 1233, 43·9%) according to HRCS categories, or were related to factors influencing health status and contact with health services (n = 1012, 36·1%) according to ICD-10 classification. Conclusions Conducting community focused RHPs demonstrates a valuable method to address community-specific rural health priorities by engaging medical students in research projects while simultaneously enhancing their research skills.

Abstract Background ALL_EARS@UoS is a patient and public involvement and engagement (PPIE) group for people with lived experience of hearing loss. The purpose of the group is to share experiences of hearing loss and hearing healthcare, inform research and improve services for patients at University of Southampton Auditory Implant Service. A year after inception, we wanted to critically reflect on the value and challenges of the group. Four members of ALL_EARS@UoS were recruited to an evaluation steering group. This paper reports the evaluation of the group using the UK Standards for Public Involvement. Methods An anonymous, mixed-methods questionnaire was co-designed and shared with members of ALL_EARS@UoS using an online platform. The questionnaire was designed to capture satisfaction, individual feedback through free-text answers, and demographic information. Descriptive statistics have been used to express the satisfaction and demographic data. Reflexive thematic analysis has been used to analyse the free-text responses. Group engagement and activity data over time were monitored and collected. Results The questionnaire response rate was 61% (11/18). Areas identified as strengths were ‘Communication’ and ‘Working together’. Five themes were developed from the thematic analysis; (1) Increased knowledge and awareness around the topic of hearing health for group members and wider society, (2) supporting research, (3) inclusivity within the group, (4) opportunity to make a difference for people in the future and (5) running of the group/group organisation. The data highlighted the value and challenges of PPIE. Members described feeling listened to and appreciation of being able to share experiences. Time of day and meeting format were identified as challenges as they affected who could attend the meetings. The ability to secure and maintain sufficient funding and time to support inclusive and diverse PPIE activities is a challenge for researchers. Conclusions We have identified how PPIE added value to both group members and researchers, emphasising the true benefit of PPIE. We have highlighted challenges we are facing and our plan to tackle these. We aim to continue to develop and sustain a group that reflects the diversity of the Deaf/deaf or hard of hearing community and of our local community.

Abstract Rodents are notorious pests, known for transmitting major public health diseases and causing agricultural and economic losses. The lack of site-specific and national standardised rodent surveillance in several disadvantaged communities has rendered interventions targeted towards rodent control as often ineffective. Here, by using the example from a pilot case-study in the Bahamas, we present a unique experience wherein, through multidisciplinary and community engagement, we simultaneously developed a standardised national surveillance protocol, and performed two parallel but integrated activities: (1) eight days of theoretical and practical training of selected participants; and (2) a three-month post-training pilot rodent surveillance in the urban community of Over-the-Hill, Nassau, The Bahamas. To account for social and environmental conditions influencing rodent proliferation in the Bahamas, we engaged selected influential community members through a semi-structured interview and gathered additional site-specific information using a modified Centers for Diseases Control and Prevention (CDC) exterior and interior rodent evaluation form, along with other validated instruments such as tracking plates and snap trapping, to test and establish a standardised site-specific rodent surveillance protocol tailored for the Bahamas. Our engagement with community members highlighted poor disposal of animal and human food, irregular garbage collection, unapproved refuse storage, lack of accessible dumpsters, poor bulk waste management, ownership problems and structural deficiencies as major factors fuelling rodent proliferation in the study areas. Accordingly, results from our pilot survey using active rodent signs (that is, the presence of rodent runs, burrows, faecal material or gnawed material) as a proxy of rodent infestation in a generalized linear model confirmed that the variables earlier identified during the community engagement program as significantly correlated with rodent activities (and capturing) across the study areas. The successful implementation of the novel site-specific protocol by trained participants, along with the correlation of their findings with those recorded during the community engagement program, underscores its suitability and applicability in disadvantaged urban settings. This experience should serve as a reference for promoting a standardised protocol for monitoring rodent activities in many disadvantaged urban settings of the Global South, while also fostering a holistic understanding of rodent proliferation. Through this pilot case-study, we advocate for the feasibility of developing sustainable rodent control interventions that are acceptable to both local communities and public authorities, particularly through the involvement of a multidisciplinary team of professionals and community members.

Background: Health literacy outreach is commonplace within public and hospital libraries but less so in academic libraries, where it is often viewed as not integral. Academic health science libraries may collaborate with public libraries to provide public health information literacy programming or “train the trainer” sessions, but examples of academic health science librarians leading community health initiatives are still limited. Case Presentation: This case report discusses a collaborative project between Gonzaga’s Foley Center Library, the School of Nursing and Human Physiology, and a local elementary school to promote health literacy for students and their families, led by an Academic Health Sciences Librarian. The project scope included delivering nutrition education to elementary school students and their families, but pandemic closures limited plans for in-person programming. Conversations with stakeholders led to additional project opportunities, including tabling at the local block party, collaborating on a campus visit for 5th and 6th graders, supporting middle school cooking classes, and the creation of a toolkit for elementary and middle school teachers to support curriculum about healthy body image and potential disordered eating. Conclusion: This project demonstrates one example of how academic libraries can partner with other campus departments to support health literacy outreach in their local communities. The pandemic made planning for in-person programming tenuous, but by expanding meetings to include staff from other areas of the university, the project team was able to tap into additional outreach opportunities. This work fostered close relationships with the local elementary school, providing the groundwork for collaborative health programming in the future, though more thorough assessment is suggested for future projects.

Abstract Background Research priorities are best defined through engagement with communities who will be impacted by the research and have lived experience of the topics to be studied. We aimed to establish a pediatric rare disease community stakeholder group and empower them in (1) eliciting perspectives from affected families in the wider region and (2) synthesizing collective ideas into a research agenda focused on shared ethical, legal, and social implications (ELSI) across rare disease. Methods This two-year project utilized a community-centered approach to engage rare disease community members as equal partners in developing a research agenda for ELSI in rare disease. We established “Rare Voices” (RV), a 22-member stakeholder group of patients, parents, clinicians and researchers. Following capacity-building trainings, RV designed and conducted listening sessions with teen patients and parents of children with rare diseases to explore challenges, positive experiences, and ethical concerns. Listening session findings were synthesized and contextualized into research topics, which RV members further refined and prioritized. We used established measures to assess RV member engagement and satisfaction. Results From 14 listening sessions with parents (n = 52) and teen patients (n = 13), RV identified eight core research topics as most important for future rare disease research: coordinating care, communication, accessing resources and care, impact on family unit, community and support in society, mental health and identity, ethical aspects of care, and uncertainty. RV members were highly engaged throughout the two-year project and reported high levels of satisfaction with the experience and research agenda. Conclusions Through capacity-building and authentic engagement, this project resulted in a community-led rare disease research agenda to guide future rare disease ELSI research that aligns with patients’ and families’ priorities. An environment of equal partnership and respect created a space for mutual learning where community members were empowered to shape the research agenda based on their collective experiences. The agenda recognizes the shared psychosocial and healthcare experiences of rare disease and offers practical areas of research to address patient and family needs.

Abstract Background Meaningful community engagement (CE) in HIV prevention research is crucial for successful and ethically robust study implementation. We conducted a qualitative study to understand the current CE practices in HIV prevention research and to identify expressed and implicit reasons behind translational gaps highlighted by communities and researchers. Methods For this exploratory qualitative study, we recruited a purposive sample of participants from Indian government-recognised key populations such as men who have sex with men, transgender women, people who inject drugs and female sex workers; general population adults and adolescents/youth; and researchers. We conducted 13 virtual focus groups (n = 86) between July and October 2021. Data were explored from a critical realist perspective and framing analysis (i.e., examining how the participants framed the narratives). Results Participants reported that study communities, especially those from key populations, were primarily involved in data collection, but not necessarily with optimal training. Involvement of communities before the start of the study (e.g., obtaining feedback on the study’s purpose/design) or once the study is completed (e.g., sharing of findings) were highlighted as priorities for meaningful engagement. Participants suggested meaningful CE in all stages of the study: (1) before the study—to get inputs in finalising the study design, drafting comprehensible informed consent forms and culturally-appropriate data collection tools, and deciding on appropriate monetary compensation; (2) during the study—adequate training of community field research staff; and (3) after the study—sharing the draft findings to get community inputs, and involving communities in advocacy activities towards converting evidence into action, policy or programs. Timely and transparent communications with communities were explicitly stated as critical for gaining and maintaining trust. Mutual respect, reciprocity (e.g., appropriate monetary compensation) and robust community feedback mechanisms were considered critical for meaningful CE. Conclusions The findings highlighted the translational gaps and priority areas for capacity building to strengthen CE in HIV prevention research. It is not only important to engage communities at various stages of research but to understand that trust, dignity, respect, and reciprocity are fundamentally preferred ways of meaningful community engagement.

Abstract Background Identifying locally relevant and agreed-upon priorities for improving young people’s mental health, aligned with social and environmental factors, is essential for benefiting target communities. This paper describes a participatory approach to engage young people and professionals in identifying such priorities, whilst considering the social determinants related to them. Methods We utilised a community-based participatory approach to support young people and professionals in identifying, reviewing, refining, and prioritising, locally relevant opportunity areas that are crucial for understanding and addressing social determinants of young people’s mental health. We adopted a flexible five-stage process, which enabled greater reflection and adaptation in response to young people’s and professionals’ feedback and reflections. Results Over seven months, we engaged with young people and professionals in Northern Devon, (a rural area in southwest England), involving over 290 individuals to identify locally relevant priorities for supporting young people’s mental health. Three priorities were identified for subsequent exploration using co-design approaches: (1) identity and belonging; (2) mental health awareness and literacy; and (3) diverse opportunities (for education, employment and leisure). The engagements suggested that designing initiatives and strategies in these areas could contribute to improvements in young people’s mental health. Conclusion Young people in Northern Devon prioritised three themes for the next phase of the Kailo Programme—mental health literacy, access to diverse careers and employment opportunities, and identity and belonging within their communities. Rural communities face unique barriers associated with these issues, related to less diverse populations, lack of access to reliable and affordable transport and local industries, and seasonal working. The perceived neglect by authorities towards rural young people has resulted in a lack of activities and opportunities catering to their specific needs, compared to urban areas. Although the government has recognised the need to address these disparities, community members suggest that there is still more work to be done.

Abstract Background Dengue is a major public health concern in Bangladesh. This study aimed to assess the perceptions and practices of community members in Dhaka regarding community engagement and social participation for dengue prevention. Methods A cross‐sectional online survey was conducted in Dhaka City from May 2022 to December 2022. The respondents were randomly selected. The association between community participation and prevention practices was tested using the χ2 test. Results The findings of this study indicate that the majority of participants (92%) believed that community effort would be relied upon in the event of a dengue outbreak. Environmental cleaning campaigns were the preferred approach, and religious leaders viewed them positively. This study also revealed significant variations in knowledge levels, with those involved in community efforts and mass gatherings demonstrating greater knowledge. This study sheds light on the demographic factors that influence dengue knowledge and provides valuable insights into the development of targeted public health interventions. Conclusion The study revealed negative perceptions and limited participation in dengue prevention among participants, with the majority demonstrating a poor understanding of preventive measures. While some showed positive attitudes towards community engagement, significant disparities existed in participation, highlighting the need for targeted educational campaigns and enhanced community mobilization efforts. Moreover, the importance of multisectoral collaboration is emphasized, underscoring the need for coordinated efforts among health departments, NGOs, religious institutions, and community leaders to effectively combat dengue transmission. Recommendations include ongoing educational initiatives, targeted interventions to promote community involvement, and fostering collaboration across sectors to strengthen dengue prevention efforts and to safeguard public health.

BackgroundWhile relationships and connectedness among organizations have been included in implementation theories, models, and frameworks, the increased attention to health equity in implementation science raises the urgency of understanding the role of relationships external to the implementing organization. This paper addresses this gap through an exploration of the role of external relationships in community-based, equity-focused interventions.MethodsThis study focuses on an equity-focused, community-based COVID-19 vaccination intervention in Arkansas, drawing upon long-term community-engaged relationships among University of Arkansas for Medical Sciences and the Hispanic and Marshallese Islander communities. We used an exploratory qualitative descriptive design to examine barriers and facilitators to implementation of COVID-19 vaccination events analyzing in-depth qualitative interviews with implementation team members (n = 17).ResultsAll participants described pre-existing relationships among the implementing organization, partner organizations, and communities as a key implementation determinant for this equity-focused program. At the inter-organizational level, external relationships included formal connections and informal relationships among staff (e.g., communication channels from prior partnerships). At the individual level, strong external relationships with the community were facilitators leveraging long-term engagement, community familiarity, and staff from the communities of focus. Strong external relationships facilitated program reach in underserved communities through three mechanisms: (1) reduced time required to establish functional working relationships among partners; (2) accessibility and cultural congruence of health services; and (3) increased trust among community members. Barriers to implementation also existed in external relationships, but had less influence than facilitators.ConclusionsAchieving health equity in implementation science requires greater understanding of external relationships as implementation determinants. This exploratory study makes a significant contribution to the literature by describing the types of external relationships that facilitate equitable implementation and identifying the mechanisms through which they may work. We argue that approaches to community engagement drawn from community-engaged research approaches may be useful, as these processes require investment in building/maintaining formal and informal organizational and interpersonal relationships. Further research is needed to understand connections among external relationships and other implementation determinants.

Background Vaccination is an important public health intervention, but not everyone benefits equally. Biological, social and structural factors render some communities vulnerable and unable to secure optimal health benefits from vaccination programmes. This drives health inequity and undermines wider vaccine impact by allowing the persistence of non-immune communities as foci for recurrent disease outbreaks. The NIHR Global Health Research Group on Vaccines for vulnerable people in Africa (VAnguard) aims to understand how biological, social, and structural factors interact to impair vaccine impact in vulnerable African communities. Methods The VAnguard project will be implemented through three thematic work packages (1-3) and four cross-cutting work packages (4-7). Work package 1 will investigate the biological drivers and mechanisms of population differences in vaccine responses. Work package 2 will support the understanding of how structural, social and biological determinants of vaccine response interrelate to determine vaccine impact. Work package 3 will synthesise data and lead analyses to develop, model and test community-based integrated strategies to optimise vaccine access, uptake and effectiveness. Work package 4 will plan and implement field investigations (community survey and qualitative studies (with support of work package 2) to explore structural, social & biological determinants impairing vaccine impact. Work package 5 will collaborate with work packages 1-4, to engage communities in designing interventions that aim to directly optimise vaccine impact through a process of co-learning and co-creation between them and the researchers. Work package 6 will build capacity for, and a culture of, consultative, collaborative multidisciplinary vaccine research in East Africa. Work package 7 will support the overall project management and governance. Following the project inception on the 1st of September 2022, project launch was held in November 2022. Conclusion Results from this project will contribute to the development of integrated strategies that will optimise vaccine benefits and drive health equity.

Background: Nomadic populations are frequently isolated and vulnerable to diseases including tuberculosis (TB) and human immunodeficiency virus (HIV) due to limited access to health-related information and services, poverty, and social exclusion. We designed and implemented community-driven and -based outreach for TB and HIV based on the results of a TB knowledge, attitude, and practices (KAP) survey in Adamawa, Nigeria. Methods: We conducted a cross-sectional study on KAP among nomads using an adapted WHO survey. A TB and HIV community-level active case-finding intervention among nomadic populations was planned and delivered based on the KAP survey results. Results: Among 81 respondents, 26 (32.1%) knew what caused TB. More than 60% reported no health facilities in their community. Radio and healthcare workers were primary sources of information on health. Using community input, we developed and broadcasted radio jingles to sensitize people to TB services. Outreach initiatives led to the verbal screening of 61,891 individuals and 306 were diagnosed with TB. Additionally, 4489 people underwent HIV testing, and 69 were HIV-positive, all of whom were linked to treatment. Conclusions: The results of KAP surveys can inform the design of evidence-based TB and HIV community-driven and -based case-finding interventions in rural Nigeria among nomadic populations.

The World Health Organization (WHO) recommends the use of annual mass drug administration (MDA) as the strategy for controlling and eliminating the five preventive chemotherapy neglected tropical diseases (PC-NTDs). The success of MDAs hinges on community acceptance, active participation, and compliance. This study aimed to explore the experiences and perceptions of community members, to obtain a more thorough understanding of their openness and willingness to participate in MDA and other NTD elimination activities. A mixed-methods approach was employed, utilizing qualitative and quantitative methods for comprehensive data collection. Eighteen key informant interviews (KIIs) and sixteen focus group discussions (FGDs) were conducted to explore community engagement, participation, medication utilization, and programme perception. Triangulation of findings from interviews and discussions with household survey results was performed to gain a deeper understanding of emerging themes. The household survey involved interviewing 1220 individuals (Abaji: 687; Bwari: 533). Audio tapes recorded KIIs and FGDs, with interview transcripts coded using Nvivo 12.0 software based on predefined themes. Descriptive analysis using SPSS version 21 was applied to quantitative data. Results indicated high awareness of mass drug administration (MDA) campaigns in both area councils (Abaji: 84.9%; Bwari: 82.9%), with a small percentage claiming ignorance (15.1%), attributed to lack of information or absence during health campaigns. Respondents primarily participated by taking medication (82.5%), with minimal involvement in other MDA campaigns. Perception of medicines was generally positive, with a significant association between participation level and performance rating (p < 0.05). The study recommends leveraging high awareness and community responsiveness to enhance engagement in various MDA activities, ensuring sustainability and ownership of the programme.

Abstract Introduction Achieving effective community engagement has been an objective of U.S. National Institutes of Health-funded HIV research efforts, including participation of persons with HIV. Community Advisory Boards (CABs) have remained the predominant model for community engagement since their creation in 1989. As HIV cure-directed research efforts have grown into larger academic-industry partnerships directing resources toward both basic and clinical research under the Martin Delaney Collaboratories (MDC), community input models have also evolved. The BEAT-HIV MDC Collaboratory, based at The Wistar Institute in Philadelphia, United States, implemented a three-part model for community engagement that has shown success in providing greater impact for community engagement across basic, biomedical, and social sciences research efforts. Discussion In this paper, we review the case study of the formation of the BEAT-HIV Community Engagement Group (CEG) model, starting with the historical partnership between The Wistar Institute as a basic research center and Philadelphia FIGHT as a not-for-profit community-based organization (CBO), and culminating with the growth of community engagement under the BEAT-HIV MDC. Second, we present the impact of a cooperative structure including a Community Advisory Board (CAB), CBO, and researchers through the BEAT-HIV CEG model, and highlight collaborative projects that demonstrate the potential strengths, challenges, and opportunities of this model. We also describe challenges and future opportunities for the use of the CEG model. Conclusions Our CEG model integrating a CBO, CAB and scientists could help move us towards the goal of effective, equitable and ethical engagement in HIV cure-directed research. In sharing our lessons learned, challenges and growing pains, we contribute to the science of community engagement into biomedical research efforts with an emphasis on HIV cure-directed research. Our documented experience with implementing the CEG supports greater discussion and independent implementation efforts for this model to engage communities into working teams in a way we find a meaningful, ethical, and sustainable model in support of basic, clinical/biomedical, social sciences and ethics research.

This manuscript addresses a critical topic: navigating complexities of conducting clinical trials during a pandemic. Central to this discussion is engaging communities to ensure diverse participation. The manuscript elucidates deliberate strategies employed to recruit minority communities with poor social drivers of health for participation in COVID-19 trials. The paper adopts a descriptive approach, eschewing analysis of data-driven efficacy of these efforts, and instead provides a comprehensive account of strategies utilized. The Accelerate COVID-19 Treatment Interventions and Vaccines (ACTIV) public–private partnership launched early in the COVID-19 pandemic to develop clinical trials to advance SARS-CoV-2 treatments. In this paper, ACTIV investigators share challenges in conducting research during an evolving pandemic and approaches selected to engage communities when traditional strategies were infeasible. Lessons from this experience include importance of community representatives’ involvement early in study design and implementation and integration of well-developed public outreach and communication strategies with trial launch. Centralization and coordination of outreach will allow for efficient use of resources and the sharing of best practices. Insights gleaned from the ACTIV program, as outlined in this paper, shed light on effective strategies for involving communities in treatment trials amidst rapidly evolving public health emergencies. This underscores critical importance of community engagement initiatives well in advance of the pandemic.

Engaging diverse partners in each phase of the research process is the gold standard of community-engaged research and adds value to the impact of implementation science. However, partner engagement in dissemination, particularly meaningful involvement in developing peer-reviewed manuscripts, is lacking. The Implementation Science Centers in Cancer Control are using the Translational Science Benefits Model to demonstrate the impact of our work beyond traditional metrics, including building capacity and promoting community engagement. This paper presents a case example of one center that has developed a policy for including community partners as coauthors. Standard practices are used to foster clear communications and bidirectional collaboration. Of published papers focused on center infrastructure and implementation research pilots, 92% have community partner coauthors. This includes 21 individuals in roles ranging from physician assistant to medical director to quality manager. Through this intentional experience of co-creation, community partners have strengthened implementation science expertise. Community coauthors have also ensured that data interpretation and dissemination reflect real-world practice environments and offer sustainable strategies for rapid translation to practice improvements. Funders, academic journals, and researchers all have important roles to play in supporting community coauthors as critical thought partners who can help to narrow the gap between research and practice.

Abstract Purpose: Community inclusion in research may increase the quality and relevance of research, but doing so in an equitable way is complex. Novel approaches used to build engagement with historically marginalized communities in other sectors may have relevance in the clinical research sector. Method: To address long-standing gaps and challenges, a stakeholder group was convened to develop a theory of change (ToC), a structured method for obtaining input from stakeholders to enhance the design, conduct, and dissemination of research. The stakeholder group, comprised of Black residents within a metropolitan area, followed a structured monthly meeting schedule for 12 months to produce an outcome map, a model that formally defines aspects of research and engagement for this community. Results: Stakeholders reported significant improvements in trust in and engagement with research over the 12-month period, but not changes in health empowerment (individual, organizational, or community level). Through this convening process, a ToC and outcome map were developed with the focus of building bidirectional relationships between groups identifying as Black, Indigenous, and People of Color (BIPOC) and researchers in Boston, MA. Additionally, the group developed a community ownership model and guidelines for researchers to adhere to when utilizing the ToC and outcome map with BIPOC communities. Conclusion: Co-ownership of models to develop bidirectional relationships between researchers and community members, such as the ToC and outcome map, may advance and further the value and reach of community-based participatory research while increasing levels of trust and engagement in research.

There is increasing recognition of the crucial need for robust community engagement in health research and clinical trials. Despite this awareness, challenges persist in bridging the gap between researchers and communities. Much of the current discourse focuses on addressing issues such as cultural humility and equitable partnerships. To expand this conversation, we conducted community engagement studios, following the model by Joosten et al. We wanted to gather perspectives on research involvement across New Mexico. This process and resultant findings offer valuable insights into effective community engagement practices and advance clinical and translational science by amplifying community voices and needs.

Dyads can be challenging to recruit for research studies, but detailed reporting on strategies employed to recruit adult–adolescent dyads is rare. We describe experiences recruiting adult–youth dyads for a hypertension education intervention comparing recruitment in an emergency department (ED) setting with a school-based community setting. We found more success in recruiting dyads through a school-based model that started with adolescent youth (19 dyads in 7 weeks with < 1 hour recruitment) compared to an ED-based model that started with adults (2 dyads in 17 weeks with 350 hours of recruitment). These findings can benefit future adult–youth dyad recruitment for research studies.

Multisector stakeholders, including, community-based organizations, health systems, researchers, policymakers, and commerce, increasingly seek to address health inequities that persist due to structural racism. They require accessible tools to visualize and quantify the prevalence of social drivers of health (SDOH) and correlate them with health to facilitate dialog and action. We developed and deployed a web-based data visualization platform to make health and SDOH data available to the community. We conducted interviews and focus groups among end users of the platform to establish needs and desired platform functionality. The platform displays curated SDOH and de-identified and aggregated local electronic health record data. The resulting Social, Environmental, and Equity Drivers (SEED) Health Atlas integrates SDOH data across multiple constructs, including socioeconomic status, environmental pollution, and built environment. Aggregated health prevalence data on multiple conditions can be visualized in interactive maps. Data can be visualized and downloaded without coding knowledge. Visualizations facilitate an understanding of community health priorities and local health inequities. SEED could facilitate future discussions on improving community health and health equity. SEED provides a promising tool that members of the community and researchers may use in their efforts to improve health equity.

The survey investigates COVID-19 information source trust levels and Vietnamese Americans’ willingness to participate in clinical trials. An analysis of 212 completed surveys revealed that trust in coronavirus disease 2019 (COVID-19) clinical trial information from university hospitals and drug companies was associated with willingness to participate in clinical trials. Trust in COVID-19 information from federal governments and state governments was also associated with willingness to participate in clinical trials. However, trust in local health facilities was linked to trial participation reluctance. The results suggest that Vietnamese Americans’ participation in clinical trials can be increased by identifying and using trusted sources of information.

Abstract Introduction: Traditionally, research institutions have valued individual achievements such as principal investigator and lead authorship status as primary indicators in the academic promotions process. However, the scientific process increasingly requires collaboration by teams of researchers across multiple disciplines, sometimes including experts outside academia, often referred to as “team science.” We sought to determine whether there is agreement about what constitutes team science at our academic institution and whether current promotion processes sufficiently incentivize faculty participation in team science. Methods: We conducted 20 qualitative interviews with academic leaders (N = 24) at the University of California, San Francisco (UCSF) who supervise faculty promotions processes. Participants were asked to share their definitions of team science and the extent to which faculty receive credit for engaging in these activities during the promotions process. A subset of participants also completed a brief survey in which they ranked the importance of participation in team science relative to other factors that are traditionally valued in the promotions process. Interview data were examined by two analysts using structural coding. Descriptive analyses were conducted of survey responses. Results: Though team science is valued at UCSF, definitions of team science and the approach to assigning credit for team science in academic promotions processes varied widely. Participants suggested opportunities to bolster support for team science. Conclusions: Efforts to define and provide transparent faculty incentives for team science should be prioritized at institutions, like UCSF, seeking to advance faculty engagement in collaborative research.

Community involvement in research is key to translating science into practice, and new approaches to engaging community members in research design and implementation are needed. The Community Scientist Program, established at the MD Anderson Cancer Center in Houston in 2018 and expanded to two other Texas institutions in 2021, provides researchers with rapid feedback from community members on study feasibility and design, cultural appropriateness, participant recruitment, and research implementation. This paper aims to describe the Community Scientist Program and assess Community Scientists' and researchers' satisfaction with the program. We present the analysis of the data collected from 116 Community Scientists and 64 researchers who attended 100 feedback sessions, across three regions of Texas including Northeast Texas, Houston, and Rio Grande Valley between June 2018 and December 2022. Community Scientists stated that the feedback sessions increased their knowledge and changed their perception of research. All researchers (100%) were satisfied with the feedback and reported that it influenced their current and future research methods. Our evaluation demonstrates that the key features of the Community Scientist Program such as follow-up evaluations, effective bi-directional communication, and fair compensation transform how research is conducted and contribute to reducing health disparities.

Background Dengue is the most common and widespread mosquito-borne arboviral disease globally estimated to cause >390 million infections and >20,000 deaths annually. There are no effective preventive drugs and the newly introduced vaccines are not yet available. Control of dengue transmission still relies primarily on mosquito vector control. Although most vector control methods currently used by national dengue control programs may temporarily reduce mosquito populations, there is little evidence that they affect transmission. There is an urgent need for innovative, participatory, effective, and locally adapted approaches for sustainable vector control and monitoring in which students can be particularly relevant contributors and to demonstrate a clear link between vector reduction and dengue transmission reduction, using tools that are inexpensive and easy to use by local communities in a sustainable manner. Methods Here we describe a cluster randomized controlled trial to be conducted in 46 school catchment areas in two townships in Yangon, Myanmar. The outcome measures are dengue cases confirmed by rapid diagnostic test in the townships, dengue incidence in schools, entomological indices, knowledge, attitudes and practice, behavior, and engagement. Conclusions The trial involves middle school students that positions them to become actors in dengue knowledge transfer to their communities and take a leadership role in the delivery of vector control interventions and monitoring methods. Following this rationale, we believe that students can become change agents of decentralized vector surveillance and sustainable disease control in line with recent new paradigms in integrated and participatory vector surveillance and control. This provides an opportunity to operationalize transdisciplinary research towards sustainable health development. Due to the COVID-19 pandemic and political instability in Myanmar the project has been terminated by the donor, but the protocol will be helpful for potential future implementation of the project in Myanmar and/or elsewhere. Registration: This trial was registered in the ISRCTN Registry on 31 May 2022 (https://doi.org/10.1186/ISRCTN78254298).

IntroductionCurrently, seventeen veterans die by suicide daily in the United States (U.S.). There are disparities in suicide behavior and access to preventative treatment. One disparity is the suicide rate in rural areas, including the state of Arkansas—suicide deaths among rural veterans increased 48% in the last 2 decades, double that of urban veterans. One major challenge for veterans in rural areas is the lack of healthcare providers to provide Safety Planning Intervention, which is an effective intervention to reduce suicide attempts in the general adult population and among veterans. One solution is more broadly implementing Safety Planning Intervention, by using peers to deliver the intervention in rural communities. Before implementation, the intervention needs to be adapted for peer-to-peer delivery, and barriers and facilitators identified.MethodsSince January 2021, using community-based participatory research, we collaboratively developed and executed a 1 year study to adapt Safety Planning Intervention for peer-to-peer delivery in rural communities and identified implementation barriers and facilitators prior to spread. From July 2022 to February 2023, we conducted group interviews with 12 participants: rural veterans with prior suicidal thoughts or attempts in one U.S. state, their support persons, and healthcare professionals with expertise in veteran suicide prevention, Safety Planning Intervention, and/or peer delivery. We collected qualitative data through interviews during nine, 2 h meetings, and quantitative data from one anonymous survey and real-time anonymous voting—all on the topic of core and adaptable components of Safety Planning Intervention and implementation barriers and facilitators for peer delivery in rural communities. Questions about adaptation were designed according to processes in the ENGAGED for CHANGE community-engaged intervention framework and questions about facilitators and barriers were designed according to the Health Equity Implementation Framework. Participants categorized which Safety Planning Intervention components were core or adaptable, and how freely they could be adapted, using the metaphor of a traffic light in red (do not change), yellow (change with caution), and green (change freely) categories.ResultsParticipants made few actual adaptations (categorized according to the FRAME modification system), but strongly recommended robust training for peers. Participants identified 27 implementation facilitators and 47 barriers, organized using the Health Equity Implementation Framework. Two example facilitators were (1) peer-to-peer safety planning intervention was highly acceptable to rural veterans; and (2) some state counties already had veteran crisis programs that could embed this intervention for spread. Two example barriers were (1) some community organizations that might spread the intervention have been motivated initially, wanting to help right away, yet not able to sustain interventions; and (2) uncertainty about how to reach veterans at moderate suicide risk, as many crisis programs identified them when suicide risk was higher.DiscussionOur results provide one of the more comprehensive pre-implementation assessments to date for Safety Planning Intervention in any setting, especially for peer delivery (also referred to as task shifting) outside healthcare or clinical settings. One important next step will be mapping these barriers and facilitators to implementation strategies for peer-to-peer delivery. One finding surprised our research team—despite worse societal context in rural communities leading to disproportionate suicide deaths—participants identified several positive facilitators specifically about rural communities that can be leveraged during implementation.

Recently, there has been a renewed interest in the role of community engagement in knowledge production and ethical issues such as ‘helicopter research’, indicating exploitative research activities of some researchers as well as short-term relationships with research communities especially in low- and middle-income countries. This approach is detrimental to both communities and the larger scientific community as this may breed mistrust. Major institutions such as the National Institute of Health and Care Research in the United Kingdom have highlighted the importance of community engagement as a tool to improve the reach, quality, and impact of the research by incorporating the voices and concerns of marginalized communities. Similarly, in its 2022 guidance, the American Society for Human Genetics (ASGH) highlights the need to address underrepresentation in genomics research through community engagement. Establishing ethical and meaningful long-term relationships can be challenging especially for researchers who are not members of the community or those from other countries. This article describes how ‘community-engaged research’ can address some ethical challenges in global public health in different cultural settings.

Plain English summary Patient and Public Involvement (PPI) is important for high-quality research. It makes research more relevant to patients, and makes the results more useful for the health service. To make patient involvement effective, we need skilled staff with experience of involving lay members in research, as well as engaging researchers in PPI activities. There is little guidance about staff time needed to recruit and support lay members and researchers properly. This means that we still do not understand the true cost of including patients and the public in research, and we often under cost this in funding applications. As an example, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has organised staff to support for its patient involvement. We give some thoughts on how to cost PPI staff time in funding applications. By focusing attention on the team behind the lay volunteers, we hope to encourage a much-needed discussion about the support involved, and deliver more patient benefits. The AUKCAR experience can be adapted to other research topics and contexts.

Abstract Background and Aims Reluctance to childbearing and then the reduction of the total fertility rate are common experiences of developed countries and many developing countries, including Iran, therefore, the purpose of this study was explaining barriers to childbearing using the risk communication and community engagement (RCCE) strategy. Methods The study was conducted by action research and according to RCCE during 9 months in Ardabil city. The statistical population consisted of 41 married women aged 15–54 who were eligible for childbearing, these women were purposefully selected from among the people covered by Ardabil health centers and interviewed. Data were collected using open and in‐depth interviews by the researcher and analyzed by content analysis. Results The results of data analysis led to the extraction of three main categories, personal, familial, and social barriers. The “personal barriers” category was classified into three subcategories, namely mental, belief, and awareness barriers, the “familial barriers” category was classified into two subcategories, namely social and financial barriers, and the “social barriers” category was classified into two subcategories, political and managerial barriers. Conclusions According to the results, a set of personal, familial, and social factors could affect childbearing among married women. Identification of these factors can play an effective role in designing educational and managerial programs.

Abstract Background and Aims The unified Rwandan initiative for national ZEBOVAC immunization (UMURINZI) program's community engagement component was enacted to mobilize and vaccinate high‐risk community members. This article describes best practices and lessons learned from the implementation of UMURINZI, a large‐scale Ebola vaccination program. Methods The population deemed to be at risk for EVD consisted of people who frequently cross Rwanda and the Democratic Republic of Congo (DRC) borders including those coming from Kigali City, potential first responders who have not previously been vaccinated against EVD, as well as people who reside in high‐risk border‐proximate areas of the Rubavu and Rusizi districts in the Western Province of Rwanda. These districts were selected because of their proximity to high‐traffic borders linking Rwanda to DRC's cities near an active Ebola outbreak. Volunteers of this program were adults, adolescents, and children aged 2 years or above who resided in the selected communities. Recruitment at the sites was conducted in close collaboration with each health area's Community Health Workers (CHWs). Volunteers were informed that the program involved being fully vaccinated (two doses of Ebola vaccines) within 2 months apart in the allocated vaccination sites. Results Lessons learned were categorized into four pillars: infrastructure, leadership, myths, and partnership with respect. The best practices that were used during the implementation of the UMURINZI program were the results of a collaboration among CHWs, the involvement of national and local leaders, the use of a comprehensive engagement plan, and training. The study also had limitations. Conclusion We described best practices and lessons learned during the implementation of the UMURINZI program in Rwanda. These practices and lessons learned represent promising options that could contribute to better community members' participation in mass vaccination programs. Hence, we demonstrated that rigorously designed community awareness and sensitization programs are effective for the implementation of similar programs in resource‐limited settings.

Background: While there has been a decline in maternal and perinatal mortality, deaths remain high in sub-Saharan Africa and Asia. With the sustainable development goals (SDGs) targets to reduce maternal and perinatal mortality, more needs to be done to accelerate progress and improve survival. Maternal and perinatal death surveillance and response (MPDSR) is a strategy to identify the clinical and social circumstances that contribute to maternal and perinatal deaths. Through MPDSR, an active surveillance and response cycle is established by bringing together different stakeholders to review and address these social and clinical factors. Community engagement in MPDSR provides a strong basis for collective action to address social factors and quality of care issues that contribute to maternal and perinatal deaths. Studies have shown that community members can support identification and reporting of maternal and/or perinatal deaths. Skilled care at birth has been increasing globally, but there are still gaps in quality of care. Through MPDSR, community members can collaborate with health workers to improve quality of care. But we do not know how community engagement in MPDSR works in practice; for whom it works and what aspects work (or do not work) and why. This realist review answers the question: which strategies of community engagement in MPDSR produce which outcomes in which contexts? Methods: For this realist review, we will identify published and grey literature by searching relevant databases for articles. We will include papers published from 2004 in all languages and from all countries. We have set up an advisory group drawn from academia, international organizations, and practitioners of both MPDSR and community engagement to guide the process. Conclusion: This protocol and the subsequent realist review will use theoretical approaches from the community engagement literature to generate theory on community engagement in MPDSR. Prospero registration number: CRD42022345216

Background: In 2020 the Health Science Center Libraries (HSCL) at the University of Florida collaborated with the Okeechobee County Public library (OCPL) on their plan to install Little Free Libraries (LFLs) within their community. It was agreed that the HSCL would provide consumer health-related materials for the Little Free Libraries and training with the goal of improving health literacy, precision medicine, and increasing rural access to consumer health materials and services. Case Presentation: Using census data, the County Health Improvement Plan, and OCPL circulation data the team identified minority population groups, potential accessibility issues, and local consumer health information needs and barriers to select appropriate resources. Additionally, partnerships were created with the local Health Department, Parks and Recreation services, the Rotary Club, and other local organizations to make the project a success. A total of 424 books were selected for the LFLs and 40 unique online resources were selected, printed, and shipped to OCPL to be used during LFL reference sessions. Technology was purchased to assist OCPL with their planned community health reference outreach sessions. HSCL created and provided online training on facilitating consumer health outreach, conducting health information reference services, and promoting community engagement for OCPL. Discussion: LFLs have become an important resource for lower-income rural families in Okeechobee. There are 7 LFLs in Okeechobee County, with a goal of eventually establishing 15 total to provide vital health resources and books. Over 2,456 items have been circulated among the 7 LFLs since May 2020. Overall, the project has been successful with positive feedback received from the community and with OCPL planning to continue to expand the project.

Background: The public knowledge and adherence to the established coronavirus disease 2019 (COVID-19) precautionary measures are crucial to Nigeria's war against the pandemic. Public health education on its preventive practices at the grassroots level was initially crucial to achieving a lower COVID-19 incidence in Kwara State, Nigeria. Methods: We assessed the knowledge of, and adherence to COVID-19 precautionary measures at the community level among 795 respondents from the three senatorial zones of Kwara State. Results: 54.5% (433/795) of the respondents were aged between 21 and 40 years, and 45.9% (365/795) of the respondents had a bachelor's degree or higher. Study participants had a good knowledge of COVID-19, its symptoms, and its mode of transmission. 91.8% of the respondents (730/795) had a positive perception of the COVID-19 preventive measures while 96.1% (763/795) of the respondents agreed that maintaining social distance was important in curbing the COVID-19 pandemic. However, only 38% (302/795) of them used face masks and only 25.7% (204/795) of the respondents used hand sanitizers. In addition, only 31.9% (253/795) of the respondents isolated themselves when they were ill. Multi-variable logistic regression analysis revealed that education, occupation, gender, and ethnicity were significantly associated with positive COVID-19 preventive practices among residents of Kwara State. Civil servants were more likely (AOR: 3.14; 95% confidence interval [CI]: 0.67 to 14.82; P = 0.034) to have positive preventive attitudes than other respondents. Study participants with tertiary education and those that were Yoruba (ethnicity) were 14.81 times more likely (95% CI: 4.29 to 51.05; P = 0.001) and 5.19 times more likely (95% CI: 1.82 to 14.84; P = 0.007) to have positive attitudes towards the laid-down COVID-19 preventive measures respectively. Conclusion: The poor community adherence to the COVID-19 preventive practices could pre-dispose Kwara to more COVID-19 cases. More community engagement activities are needed to fully curb the spread of the COVID-19. Public health education should focus on preventive measures, vaccine acceptance, and community monitoring of COVID-19.

Abstract Background Community engagement (CE) has been increasingly implemented across health interventions, including for maternal and newborn health (MNH). This may take various forms, from participatory women’s groups and community health committees to public advocacy days. While research suggests a positive influence of CE on MNH outcomes, such as mortality or care-seeking behaviour, there is a need for further evidence on the processes of CE in different settings in order to inform the future development and implementation of CE across programmes. Communication is an integral component of CE serving as a link between the programme and community. The aim of the realist review described in this protocol is to understand how, why, to what extent, and for whom CE contributes to intended and unintended outcomes in MNH programming, focusing on the communication components of CE. Methods Realist review methodology will be used to provide a causal understanding of what communication for CE interventions in MNH programming work, for whom, to what extent, why, and how. This will be done by developing and refining programme theories on communications for CE in MNH through a systematic review of the literature and engaging key experts for input and feedback. By extrapolating context-mechanism-outcome configurations, this review seeks to understand how certain contexts trigger or inhibit specific mechanisms and what outcomes this interaction generates when communication in CE interventions is used in MNH programming. Discussion A realist philosophy is well-suited to address the aims of this study because of the complex nature of CE. The review findings will be used to inform a realist evaluation case study of CE for an MNH programme in order to ascertain transferable findings that can inform and guide engagement activities in various settings. Findings will also be shared with stakeholders and experts involved in the consultative processes of the review (through workshops or policy briefs) in order to ensure the relevance of these findings to policy and practice. Systematic review registration PROSPERO CRD42022293564

Plain English Summary Community engagement or community involvement in Aboriginal health research is a process that involves partnering with Aboriginal and Torres Strait Islander people or potential research participants to empower them to have a say in how research with Aboriginal communities is carried out. In the context of Aboriginal health, this is particularly important so that researchers can respond to the priorities of the community and conduct research in a way that respectful of Aboriginal cultural values and beliefs. One approach to community engagement in research is to form a community reference group to provide input to the research project. Although using a community reference group is considered to be an effective way to involve community members in research, often there are practical challenges in setting up and sustaining such a group. In this paper, we set out to describe an approach used to set up a community reference group for a new Aboriginal health research project exploring joint pain in Aboriginal and Torres Strait Islander people. This involved interviewing 13 health professionals and researchers (12 who identified as Aboriginal and one who identified as Aboriginal and Torres Strait Islander) about how to best go about setting up a community reference group. We used recommendations from these participants to inform who we approached to be members of the group and how the group would function. In describing the process we used to establish a community reference group, we were able to design a 10-step practical guide which may help other research groups who are looking to conduct new, ethical Aboriginal health research projects.

Objective: We sought to identify trends and themes in how academic health sciences libraries in the United States, Canada and Mexico have supported engagement and outreach with Native Americans, Alaska Natives, First Nations, and Indigenous peoples, in or from those same countries. We also sought to learn and share effective practices for libraries engaging with these communities. Methods: We conducted a scoping review utilizing Arksey and O’Malley’s framework for scoping reviews and followed principles from JBI Manual for Evidence Synthesis. We searched seven bibliographic databases, E-LIS (Eprints in Library and Information Science repository), and multiple sources of grey literature. Results were screened using Covidence and Google Sheets. We reported our review according to the PRISMA and PRISMA-S guidelines. We determined types of interventions used by academic health sciences libraries in engagement with our included populations, the level of public participation reached by these interventions, what partnerships were established, and what practices emerged. Results: Database searching returned 2,020 unique results. Additional searching resulted in 211 further unique results. Full text screening of relevant articles found 65 reports meeting criteria for inclusion. Data extraction was conducted on these programs to identify partners, intervention type, and evaluation method. The programs were categorized using the IAP2 Spectrum of Public Participation. Conclusion: Our scoping review found that many programs were health information trainings and did not move beyond informing the public with little further involvement. The need for sustained funding, greater community participation and more publishing on engagement and outreach are discussed.

Background: Within the Voluntary Medical Male Circumcision (VMMC) programme, community engagement has been central in facilitating the acceptance of VMMC, especially in non-circumcising communities. We used the case of the development of community engagement plans for sustainability of VMMC in Zambia to illustrate diversity of stakeholders, their power, roles, and strategies in community engagement. Methods: Data were collected using document review, in-depth interviews (n=35) and focus group discussions (n=35) with community stakeholders, health workers, health centre committees, counsellors, teachers, community volunteers and parents/caregivers. Data were analysed using thematic analysis. The analysis was guided by the power and interest model. Results: Differences were noted between the rural and urban sites in terms of power/influence and interest rating of community stakeholders who could be involved in the sustainability phase of the VMMC response in Zambia. For example, in the urban setting, neighbourhood health committees (NHCs), health workers, leaders of clubs, community health workers (CHWs), radio, television and social media platforms were ranked highest. From this list, social media and television platforms were not highly ranked in rural areas. Some stakeholders had more sources of power than others. Forms or sources of power included technical expertise, local authority, financial resources, collective action (action through schools, churches, media platforms, other community spaces), and relational power. Key roles and strategies included strengthening and broadening local coordination systems, enhancing community involvement, promoting community-led monitoring and evaluation, through the use of locally recognised communication spaces and channels, facilitating ownership of VMMC, and improving local accountability processes in VMMC activities. Conclusions: By consulting with the most relevant stakeholders, and considering community needs in programme development, the VMMC programme may be able to leverage the community structures and systems to reduce long term demand generation costs for VMMC and increase the acceptability and frequency of male circumcision.

Background: The eradication of poliovirus and improving routine immunization (RI) coverage rates present significant challenges in Pakistan. There is a need for interventions that focus on strengthening community engagement to improve routine immunization coverage. Our primary objective is to assess the impact of an integrated strategy designed to enhance community engagement and maternal and child health immunization campaigns on immunization coverage in Pakistan’s high-risk union councils of polio-endemic districts. Method: We implemented an integrated approach for routine immunization and maternal and child health in the polio-endemic district of Pakistan. This approach involved setting up health camps and actively engaging and mobilizing the local community. An independent team conducted surveys at three key points: baseline, midline, and endline, to evaluate immunization coverage among children under the age of five. The primary outcome measures for the study were coverage of OPV, IPV, and changes in the proportion of unvaccinated and fully vaccinated children. To select clusters and eligible households in each cluster, we utilized a 30 × 15 cluster sampling technique. Multivariable associations between socio-demographic factors and changes in the proportion of fully vaccinated children at the UC level were assessed using hierarchical linear regression models. Results: A total of 256,946 children under the age of five (122,950 at baseline and 133,996 at endline) were enrolled in the study. By the endline, full immunization coverage had increased to 60% or more in all three study areas compared to the baseline. Additionally, there was a significant increase in the coverage of both OPV and IPV across all three provinces at the endline. The full immunization rates were assessed on three levels of the framework: the distal, intermediate (access and environment), and proximal level (camp attendance and effectiveness). At the distal level, on multivariate analysis, family size was found to be a significant predictor of change in immunity within the families (β = 0.68; p ≤ 0.0001). At the intermediate level, the likelihood of full immunization decreased with the decrease in knowledge about vaccination (β = −0.38; p = 0.002), knowledge about polio vaccine (β = −0.25; p = 0.011), and knowledge about IPV (β = −0.06; p = 0.546). Perceived obstacles to vaccination were fear of adverse events (β = −0.4; p ≤ 0.0001) and lack of education (β = 0.23; p = 0.031), which were found to be significant in bivariate and multivariate analyses. At the proximal level, community mobilization (β = 0.26; p = 0.008) and attendance at health camp (β = 0.21; p ≤ 0.0001) were found to enhance full immunization coverage. On the other hand, the most prominent reason for not attending health camp included no need to attend the health camp as the child was not ill (β = −0.13; p = 0.008). Conclusions: This study found that community mobilization and attendance at health camps significantly enhanced full immunization coverage. The findings highlight the importance of community engagement and targeted interventions in improving immunization coverage and addressing barriers to healthcare seeking.

Plain English Summary In Canada, one of the lessons being learned as we navigate the current dual public health crises (COVID-19 pandemic and illicit drug overdoses and deaths) is the extent to which substance use and access to services is highly stigmatized, especially when combined with poverty, homelessness and perpetuated by racism and other forms of discrimination. Stigma and lack of feeling safe in health care can result in avoidance, delays or leaving care early, resulting in premature death and lack of essential care. Internationally, there has been a push to improve health services by involving patients as active partners in the research process. Termed “patient-oriented research” (POR), Canada’s primary federal funding agency for health research (Canadian Institutes of Health Research, CIHR) created the Strategy for Patient-Oriented (SPOR) Initiative to guide and support researchers involved in POR projects. As part of a POR project, our research team examined the SPOR Framework to determine its value in guiding research with people who use substances. Our team included people with lived and living experiences of substance use, academic researchers, health service providers, and decision makers. Five focus groups were held to review the SPOR Patient Engagement Framework and discuss strategies for successful POR. We found numerous gaps related to important elements of POR with people who use substances including the need to move away from ‘us and them’ on research teams and shifting away from individuals to communities, build trust, explicitly attend to power inequities between research partners, and acting on findings. These insights provide recommendations for more equitable POR research with people who use substances.

Abstract Patient navigation (PN) represents a branch of service delivery traditionally aimed at coordinating disjointed care services for patients with particular health conditions (e.g., cancer, HIV, diabetes). Over time, this approach has been extended to various social and health contexts, including most recently to children with neurodisability and their families. In this context, PN involves the provision of information, advice, education, and emotional support, coordination of services both within and across sectors, and the work is guided by person- and family-centred principles of practice. This manuscript documents the proceedings of the BC Summit on Navigation for Children and Youth with Neurodevelopmental Differences, Disabilities, and Special Needs, which took place on January 18 and 19, 2021 and was developed in collaboration with a Provincial Advisory Group. Our Summit brought together over 120 individuals, including researchers, government personnel, service providers, educators, healthcare workers, and family advocates. As part of the event, attendees learned from families with lived experience navigating the British Columbian (BC) service system, from BC Children’s Hospital Research Institute investigators, and from exemplar providers who deliver navigation services in various contexts (e.g., locally, regionally, and provincially). Attendees also participated in various engagement opportunities, and collaboratively identified directions for developing a future community of navigation and related services in BC.

Background: While there has been a decline in maternal and perinatal mortality, deaths remain high in sub-Saharan Africa and Asia. With the sustainable development goals (SDGs) targets to reduce maternal and perinatal mortality, more needs to be done to accelerate progress and improve survival. Maternal and perinatal death surveillance and response (MPDSR) is a strategy to identify the clinical and social circumstances that contribute to maternal and perinatal deaths. Through MPDSR, an active surveillance and response cycle is established by bringing together different stakeholders to review and address these social and clinical factors. Community engagement in MPDSR provides a strong basis for collective action to address social factors and quality of care issues that contribute to maternal and perinatal deaths. Studies have shown that community members can support identification and reporting of maternal and/or perinatal deaths. Skilled care at birth has been increasing globally, but there are still gaps in quality of care. Through MPDSR, community members can collaborate with health workers to improve quality of care. But we do not know how community engagement in MPDSR works in practice; for whom it works and what aspects work (or do not work) and why. This realist review answers the question: which strategies of community engagement in MPDSR produce which outcomes in which contexts? Methods: For this realist review, we will identify published and grey literature by searching relevant databases for articles. We will include papers published from 2004 in all languages and from all countries. We have set up an advisory group drawn from academia, international organizations, and practitioners of both MPDSR and community engagement to guide the process. Conclusion: This protocol and the subsequent realist review will use theoretical approaches from the community engagement literature to generate theory on community engagement in MPDSR. Prospero registration number: CRD42022345216

His mosquito control project heading for failure, a field entomologist recalls how a chance encounter led to a Eureka moment.

No abstract available.

Abstract Background Although community-level benefits of health system engagement (i.e., health service planning, delivery, and quality improvement, engaged research and evaluation, and collaborative advocacy) are well established, individual-level impacts on the health and well-being of community members are less explored, in particular for people who use or have used illegal drugs (PWUD). Capacity building, personal growth, reduced/safer drug use, and other positive outcomes may or may not be experienced by PWUD involved in engagement activities. Indeed, PWUD may also encounter stigma and harm when interacting with healthcare and academic structures. Our objective is to uncover why, how, and under what circumstances positive and negative health outcomes occur during health system engagement by PWUD. Methods We propose a realist review approach due to its explanatory lens. Through preliminary exploration of literature, lived experience input, and consideration of formal theories, an explanatory model was drafted. The model describes contexts, mechanisms, and health outcomes (e.g., mental health, stable/safer drug use) involved in health system engagement. The explanatory model will be tested against the literature and iteratively refined against formal theories. A participatory lens will also be used, wherein PWUD with lived experience of health system engagement will contribute throughout all stages of the review. Discussion We believe this is the first realist review to explore the contextual factors and underlying mechanisms of health outcomes for PWUD who participate in health system engagement. A thorough understanding of the relevant literature and theoretical underpinnings of this process will offer insights and recommendations to improve the engagement processes of PWUD.

Aging involves several changes depending on genetic and behavioral factors, such as lifestyle and the number and quality of social relationships, which in turn can be influenced by empathy. Here, the change in the perceived social support across the lifespan as a function of empathy was investigated, considering the mediating role of empathy after controlling for gender and education. In total, 441 people (18–91 years old) filled in the Italian short version of the Interpersonal Support Evaluation List (ISEL-12), the Social Support Questionnaire (SSQ6), as well as the Empathy Questionnaire (EQ), and the Reading the Mind in the Eyes test (RMET). The mediation analyses with ISEL-12 showed that age and the EQ fully mediated the relationship between age and appraisal, belonging, and tangible scores. Further, the EQ fully mediated only the relationship between age and SSQ6-People. These results showed that empathic skills are key in the relationships between age and social support. This suggests that empathy can trigger social support and, ultimately, well-being if stimulated across the lifespan, especially from a young age; this would help to form the socio-emotional competence across the years as a sort of cushion that can be useful in the older to fulfill active aging.

This study explores the relationships among social capital, community festival participation, and subjective well-being (SWB). It examines the mediating role of festival participation between social capital and SWB. The dataset Social Well-being Survey in Asia from the Philippines and Thailand was collected using nationwide surveys in 2016. The total number of respondents was 1057 in the Philippines and 982 in Thailand. The results affirm several determinants related to SWB, which is composed of happiness and overall life satisfaction. The models show significant relationships among festival participation, social capital, and SWB. The results indicate strong associations among social capital with family and relatives, festival participation, and SWB. The interaction effects between the two countries are included. Structural and cognitive social capital with kinship groups were important determinants in facilitating festival participation, and positively associated with SWB. Moreover, the results identify the mediating effect of festival participation between social capital with family and relatives and SWB. The results can provide similarities and differences in the relationships among social capital and kinship groups, community festival participation, and SWB between the Philippines and Thailand. This study offers important empirical evidence of a cross-cultural study in the context of the Philippines and Thailand.

Despite their documented benefits, the widespread adoption of community-engaged and participatory approaches among health researchers remains limited. Institutional practices and policies influence the uptake of community engagement and participatory approaches. We examine the role of financial arrangements between university researchers and community partners, by exploring efforts to bridge the gap between research administration and researchers at two research-intensive institutions. The type of financial arrangement a researcher has with a community partner plays an important role in setting the stage for the structure of the partnership as it relates to shared decision-making and ownership of the research. Continued efforts to clarify and streamline subcontracting processes are needed as is infrastructure to support community partners and researchers as they navigate financial arrangements if progress is to be made.

Abstract Background: Obtaining complete and accurate information in recruitment registries is essential for matching potential participants to research studies for which they qualify. Since electronic health record (EHR) systems are required to make patient data available to external systems, an interface between EHRs and recruitment registries may improve accuracy and completeness of volunteers’ profiles. We tested this hypothesis on ResearchMatch (RM), a disease- and institution-neutral recruitment registry with 1357 studies across 255 institutions. Methods: We developed an interface where volunteers signing up for RM can authorize transfer of demographic data, medical conditions, and medications from the EHR into a registration form. We obtained feedback from a panel of community members to determine acceptability of the planned integration. We then developed the EHR interface and performed an evaluation study of 100 patients to determine whether RM profiles generated with EHR-assisted adjudication included more conditions and medications than those without the EHR connection. Results: Community member feedback revealed that members of the public were willing to authenticate into the EHR from RM with proper messaging about choice and privacy. The evaluation study showed that out of 100 participants, 75 included more conditions and 69 included more medications in RM profiles completed with the EHR connection than those without. Participants also completed the EHR-connected profiles in 16 fewer seconds than non-EHR-connected profiles. Conclusions: The EHR to RM integration could lead to more complete profiles, less participant burden, and better study matches for many of the over 148,000 volunteers who participate in ResearchMatch.

Abstract Background: A Health Equity Task Force (HETF) of members from seven Centers funded by the National Cancer Institute’s (NCI) Implementation Science in Cancer Control Centers (ISC3) network sought to identify case examples of how Centers were applying a focus on health equity in implementation science to inform future research and capacity-building efforts. Methods: HETF members at each ISC3 collected information on how health equity was conceptualized, operationalized, and addressed in initial research and capacity-building efforts across the seven ISC3 Centers funded in 2019–2020. Each Center completed a questionnaire assessing five health equity domains central to implementation science (e.g., community engagement; implementation science theories, models, and frameworks (TMFs); and engaging underrepresented scholars). Data generated illustrative examples from these five domains. Results: Centers reported a range of approaches focusing on health equity in implementation research and capacity-building efforts, including (1) engaging diverse community partners/settings in making decisions about research priorities and projects; (2) applying health equity within a single TMF applied across projects or various TMFs used in specific projects; (3) evaluating health equity in operationalizing and measuring health and implementation outcomes; (4) building capacity for health equity-focused implementation science among trainees, early career scholars, and partnering organizations; and (5) leveraging varying levels of institutional resources and efforts to engage, include, and support underrepresented scholars. Conclusions: Examples of approaches to integrating health equity across the ISC3 network can inform other investigators and centers’ efforts to build capacity and infrastructure to support growth and expansion of health equity-focused implementation science.

The Community Research Advisory Council (C-RAC) of the Johns Hopkins Institute for Clinical and Translational Research was established in 2009 to provide community-engaged research consultation services. In 2016–2017, C-RAC members and researchers were surveyed on their consultation experiences. Survey results and a 2019 stakeholder meeting proceeding helped redesign the consultation services. Transitioning to virtual consultations during COVID-19, the redesigning involved increasing visibility, providing consultation materials in advance, expanding member training, and effective communications. An increase in consultations from 28 (2009–2017) to 114 (2020–2022) was observed. Implementing stakeholder-researcher inputs is critical to holistic and sustained community-engaged research.