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Background Following Nepal’s transition to a federal governance system under the 2015 Constitution and the COVID-19 pandemic, the Country Coordinating Mechanism (CCM) led a participatory process to identify national priorities for HIV, Tuberculosis (TB), and Malaria programs. The primary objective of this study was to analyze, in collaboration with community partners, the community and stakeholder engagement processes involved in priority setting. Methods Between January and June 2020, a qualitative study was conducted, including a series of community group discussions across all seven provinces and 72 municipalities. This qualitative documentation process involved over 2,000 participants across 700 sessions across all three tiers of governance. These sessions included key and vulnerable people affected by TB and HIV, as well as at-risk populations for malaria. In addition, 100 key informant interviews were held with government officials, technical experts, and civil society leaders. The analysis used both deductive and inductive methods, with involvement and input from the community stakeholders. Results The engagement process offered a space for broad and inclusive participation, with most stakeholders involved in priority setting representing key or vulnerable populations. Participants reported that recommendations, such as establishing HIV testing points for migrants at border areas, were later included in national strategic documents. Many of the system gaps identified during multi-stakeholder discussions, including drug stock outs, stigma in care, and human rights and gender related barriers were reflected in national planning processes, indicating perceived influence of the engagement process. Participants also described practical recommendations, including integration of multi-disease diagnostic initiatives (for Tuberculosis and HIV for instance, using single platforms such as GeneXpert) and strengthening community-level surveillance systems, which were considered during strategic discussions. These priorities were reflected in strategic plans and referenced by the partners (e.g. Global Fund, USAID/PEPFAR). The government further pledged 20% domestic co-financing for the programs, contributing to a sense of ownership within Nepal’s federal system. Participants further reported that the process supported transparency, trust and a sense of ownership. Conclusions CSE helped ensure that national health priorities were grounded in community realities, broadly inclusive and strategically aligned with institutional frameworks. Engaging community members as active partners in data collection, interpretation, and validation reflected the participatory nature of the entire research process. This approach may offer insights for other low- and middle-income countries.

Background While there is wide consensus that the public should be consulted about emerging technology early in development, it is difficult to elicit public opinion about innovations unfamiliar to lay audiences. We sought public input on a program of research on genetic engineering to control mosquito vectors of disease that is led by scientists at the University of California and funded by the U.S. Defense Advanced Research Projects Agency (DARPA). In preparation for this effort, we developed a series of narrated slideshows to prompt responses to the development of gene drive mosquito control strategies among lay people. We describe the development and content of these slideshows and evaluate their ability to elicit discussions among focus group participants. Methods In developing these materials, we used an iterative process involving input from experts in molecular genetics and vector control. Topics were chosen for their relevance to the goals of the scientists leading the program of research. Significant time was devoted to crafting explanations that would be accessible to uninitiated members of the public but still represent the science accurately. Through qualitative analysis of focus group discussions prompted by the slideshows, we evaluated the success of these slideshows in imparting clear technical information sufficient to inform lay discussion. Results The collaboration resulted in a series of four narrated slideshows that were used to anchor discussions in online focus groups. Many participants described the slideshows as interesting and informative, while also raising concerns and possible risks that were not directly addressed in the material presented. Open-ended comments from participants suggest that the slideshows inspired critical questions, reflection, and conversation about genetically engineered and gene drive mosquitoes. After the final and most technically complex slideshow, however, some respondents made comments suggestive of overwhelm or confusion. Conclusion Our narrated slideshows prompted engaged conversations about genetically engineered mosquitoes among members of the public who were generally naïve to this technology. Narrated slideshows may serve as viable and useful tools for future public engagement on other controversial emerging medical and public health technologies.

The clinical and translational research workforce involved in social and behavioral research (SBR) needs to keep pace with clinical research guidance and regulations. Updated information and a new module on community and stakeholder engagement were added to an existing SBR training course. This article presents evaluation findings of the updated course for the Social and Behavioral Workforce. Participants working across one university were recruited. Course completers were sent an online survey to evaluate the training. Some participants were invited to join in a focus group to discuss the application of the training to their work. We performed descriptive statistics and conducted a qualitative analysis on focus group data. There were 99 participants from diverse backgrounds who completed the survey. Most reported the training was relevant to their work or that of the study teams they worked with. Almost half (46%) indicated they would work differently after participating. Respondents with community or stakeholder engaged research experience vs. those without were more likely to report that the new module was relevant to study teams they worked with ( = 5.61, = 0.001), and that they would work differently following the training ( = 2.63, = 0.01). Open-ended survey responses ( = 99) and focus group ( = 12) data showed how participants felt their work would be affected by the training. The updated course was rated highly, particularly by those whose work was related to the new course content. This course provides an up-to-date resource for the training and development for the Social and Behavioral Workforce.

Scientists developing gene drive mosquitoes for vector control must understand how residents of affected areas regard both the problem of mosquito-borne disease and the potential solutions offered by gene drive. This study represents an experiment in public engagement at an early stage of technology development, intended to inform lab scientists about public attitudes toward their research and inspire consideration and conversation about the social ramifications of creating mosquitoes with gene drive. Online focus groups with California residents explored views on mosquito-borne disease risk, current mosquito control methods, and the proposed development and use of different classes of gene drives to control Ae. aegypti . Rather than a dogmatic rejection of genetic engineering or gene drive, many participants expressed pragmatic concerns with cost, control, the ability to narrowly target specific species, and the challenges of mistrust and institutional cooperation. Work like this can inform the alignment of community priorities and the professional priorities of scientists and vector control specialists.

Abstract Recent calls for engaging communities in biotechnology development do not draw enough attention to the hurdles that must be overcome for engagement strategies to effectively feed back into research design and conduct. These hurdles call into question many standard ways of operating and assessing in traditional scientific disciplines. The first steps in addressing these hurdles can be the most difficult. In reflecting on our own experiences in the early-stage development of environmental biotechnologies, we provide a set of techniques to help scientists and their collaborators learn to become more responsive to the needs and attitudes of communities with which they are engaging. Graphical Abstract

Background:Adequate equitable recruitment of underrepresented groups in clinical research and trials is a national problem and remains a daunting challenge to translating research discoveries into effective healthcare practices. Engagement, recruitment, and retention (ER&R) training programs for Clinical Research Professionals (CRPs) often focus on policies and regulations. Although some training on the importance of diversity and inclusion in clinical research participation has recently been developed, there remains a need for training that couples critical equity, diversity, and inclusion (EDI) concepts with skill development in effective recruitment and retention strategies, regulations, and best practices.Approach and methods:We developed the ER&R Certificate program as a holistic approach to provide Duke University CRPs the opportunity to build competency in gap areas and to increase comfort in championing equitable partnerships with clinical research participants. The thirteen core and elective courses include blended learning elements, such as e-learning and wiki journaling prompts, to facilitate meaningful discussions. Pre- and post-assessments administered to CRP program participants and their managers assessed program impact on CRP skills in ER&R tasks and comfort in equitable, diverse, and inclusive engagement of clinical research participants.Results and discussion:Results from the first two cohorts indicate that CRPs perceived growth in their own comfort with program learning objectives, especially those centered on participant partnership and EDI principles, and most managers witnessed growth in competence and responsibility for ER&R-related tasks. Results suggest value in offering CRPs robust training programs that integrate EDI and ER&R training.

Background Stakeholder and community engagement promotes collaboration and gives service users an opportunity to actively participate in the care they receive. Recognizing this potential, The Network for Improving Quality of Care for maternal, newborn and child health aimed to identify tools and operational guidance to integrate stakeholder and community engagement into quality improvement (QI) implementation. Methods A mapping, consisting of a literature review and an open call through email and listservers, for implementation tools was conducted. Materials were included if they provided guidance on stakeholder and community engagement aligned to the Network's QI framework comprising seven phases. Screening of tools was done by two reviewers. Results The literature search and the call for tools returned 197 documents with 70 tools included after screening. Most included tools (70%) were published after 2010. International organizations were the most frequently cited authors of tools. Only 15 tools covered all seven phases of the QI framework; few tools covered the more ‘technical’ phase of the QI framework: adapting standards and refining strategies. Conclusion The quantity of tools and their varied characteristics including types of stakeholder and community engagement processes across the QI framework confirms that engagement cannot be captured in a ‘one‐size‐fits‐all’ formula. Many tools were designed with a generic focus to allow for adaption and use in different settings and sectors. Country programmes looking to strengthen engagement approaches can take advantage of available tools through an online portal on the WHO website and adapt them to meet their specific needs and context. Public Involvement Programme implementers provided tools and resources during data collection.

This case study explores the adaptation of the walking method coupled with auto-photography and photo elicitation, a participatory research tool traditionally used in landscape studies, for application in dental research settings. By presenting the UniCDent toolkit, we demonstrate how this immersive method can enhance understanding of patient experiences in dentistry through sensory engagement and spatial exploration. The toolkit comprises four components: Imagery, Gallery Walk, Quadrant Mapping, and Trade-offs, each designed to facilitate active participation and foster in-depth reflections on the dental environment. Participants navigate a simulated dental clinic, documenting their sensory experiences and social interactions, thereby enriching the data collected. This multi-layered approach allows researchers to capture the complexities of patient experiences, providing insights that are applicable across various research projects within dentistry. The commentary highlights the versatility of the walking method, emphasising its role in improving patient-centred care by capturing patient experiences and perspectives. It also demonstrates its value in enhancing the understanding of diverse research enquiries in dental research.

To report on the successes and challenges with implementing the good participatory practice guidelines for the Nigerian Canadian Collaboration on AIDS Vaccine (NICCAV) project. An open and close ended questionnaire was administered to 25 randomly selected community stakeholders on the project. The questions sought information on perception about the community entry, constitution and function of the community advisory board (CAB) and community based organization (CBO), media engagement process, and research literacy programmes. The quantitative and qualitative data were analysed and findings triangulated. The project exceeded its targets on CBO engagement and community members reached. Stakeholders had significant improvement in knowledge about HIV vaccine research design and implementation (p=0.004). All respondents felt satisfied with the community entry, CAB constitution process, function and level of media engagement; 40% were satisfied with the financial support provided; 70% felt the community awareness and education coverage was satisfactory; and 40% raised concerns about the study site selection with implications for study participants' recruitment. The NICCAV community stakeholder engagement model produced satisfactory outcomes for both researchers and community stakeholders. The inclusion of an advocacy and monitoring plan enabled it to identify important challenges that were of ethical concerns for the study.

Translational research needs to show value through impact on measures that matter to the public, including health and societal benefits. To this end, the Translational Science Benefits Model (TSBM) identified four categories of impact: Clinical, Community, Economic, and Policy. However, TSBM offers limited guidance on how these areas of impact relate to equity. Central to the structure of our Center for American Indian and Alaska Native Diabetes Translation Research are seven regional, independent Satellite Centers dedicated to community-engaged research. Drawing on our collective experience, we provide empirical evidence about how TSBM applies to equity-focused research that centers community partnerships and recognizes Indigenous knowledge. For this special issue – “Advancing Understanding and Use of Impact Measures in Implementation Science” – our objective is to describe and critically evaluate gaps in the fit of TSBM as an evaluation approach with sensitivity to health equity issues. Accordingly, we suggest refinements to the original TSBM Logic model to add: 1) community representation as an indicator of providing community partners “a seat at the table” across the research life cycle to generate solutions (innovations) that influence equity and to prioritize what to evaluate, and 2) assessments of the representativeness of the measured outcomes and benefits.