Public engagement for the conduct of a controlled human infection study testing vaccines against Necator americanus (hookworm) in areas of active hookworm transmission in Brazil.

Controlled Human Infection Models (CHIS) involve administering human pathogens to healthy participants in controlled medical settings, which can elicit complex bioethical issues. Understanding how the community perceives such studies can significantly increase the participant's sense of cooperation and increases the researcher's and the participant's transparency. The current study describes the development of an educational intervention to achieve these ends as it aims to (1) analyze perceptions of the Controlled Human Infection Studies (CHIS), and (2) evaluate the participants' comprehension of the CHIS. METHODS: This is a qualitative action research that includes the development of an educational intervention with residents of a rural area in Minas Gerais, Brazil, where there is continuous natural transmission of the human pathogen Necator americanus ("hookworm"). In this area, it is intended to carry out a proposed phase 3 vaccine clinical trial in the future to test the efficacy of hookworm vaccines using controlled human infection. Two data collection strategies were used: an educational intervention and a focus group. RESULTS: The participants' perceptions showed distinct perspectives on CHIS. On one side, they recognized that the investigation is essential for the community, but on the other side, they thought that there would be resistance to its conduct by fear of infection. The idea that the study would generate a benefit for the greater good, contributing to the prevention of hookworm infection, was clearly stated. The participants perceived that the study offered concrete risks that could be reduced by constant monitoring by the researchers. They also mentioned the importance of access to information and the positive influence those who express interest in participating in the study can exert in the community. In relation to comprehension the participants memorized the information, mobilized it to explain everyday situations and created strategies to disseminate the study and engage the community in its development. By repeating and making sense of the information, the participant not only assimilates the knowledge transmitted, but also creates new knowledge. CONCLUSION: We concluded that an educational process of discussion and dialogue around participants' perceptions about the CHIS, promotes understanding and allows ways to disseminate information about the research to be collectively created.

The Community As A Full Partner: A New Model For Public Health.

The COVID-19 pandemic demonstrated a need to strengthen the US public health system by shifting toward much greater community engagement and leadership. In November and December 2023, we conducted separate online surveys of community-based organizations and large metropolitan health departments to identify barriers and opportunities for building a public health system with strong community partnerships. Identified barriers included mistrust, siloed health departments with structural challenges in funding community-based organizations, and insufficient shared decision making. The surveys helped inform our six policy recommendations: establish state and local community councils to formalize the roles of community-based organizations in public health decision making; dedicate funding to these organizations; offer funding that is not limited to a specific disease or condition; simplify procurement and reporting processes directed to community-based organizations; create a training and technical assistance program for these organizations; and increase public health worker diversity, including sustainable funding for community health workers.

Public participation in decisions about measures to manage the COVID-19 pandemic: a systematic review.

BACKGROUND: During the COVID-19 pandemic, governments and health authorities faced tough decisions about infection prevention and control measures such as social distancing, face masks and travel. Judgements underlying those decisions require democratic input, as well as expert input. The aim of this review is to inform decisions about how best to achieve public participation in decisions about public health and social interventions in the context of a pandemic or other public health emergencies. OBJECTIVES: To systematically review examples of public participation in decisions by governments and health authorities about how to control the COVID-19 pandemic. DESIGN: We searched Participedia and relevant databases in August 2022. Two authors reviewed titles and abstracts and one author screened publications promoted to full text. One author extracted data from included reports using a standard data-extraction form. A second author checked 10% of the extraction forms. We conducted a structured synthesis using framework analysis. RESULTS: We included 24 reports (18 from Participedia). Most took place in high-income countries (n=23), involved 'consulting' the public (n=17) and involved public meetings (usually online). Two initiatives reported explicit support for critical thinking. 11 initiatives were formally evaluated (only three reported impacts). Many initiatives did not contribute to a decision, and 17 initiatives did not include any explicit decision-making criteria. CONCLUSIONS: Decisions about how to manage the COVID-19 pandemic affected nearly everyone. While public participation in those decisions had the potential to improve the quality of the judgements and decisions that were made, build trust, improve adherence and help ensure transparency and accountability, few examples of such initiatives have been reported and most of those have not been formally evaluated. Identified initiatives did point out potential good practices related to online engagement, crowdsourcing and addressing potential power imbalance. Future research should address improved reporting of initiatives, explicit decision-making criteria, support for critical thinking, engagement of marginalised groups and decision-makers and communication with the public. PROSPERO REGISTRATION NUMBER: 358991.

The influence of gender and temephos exposure on community participation in dengue prevention: a compartmental mathematical model.

BACKGROUND: The use of temephos, the most common intervention for the chemical control of Aedes aegypti over the last half century, has disappointing results in control of the infection. The footprint of Aedes and the diseases it carries have spread relentlessly despite massive volumes of temephos. Recent advances in community participation show this might be more effective and sustainable for the control of the dengue vector. METHODS: Using data from the Camino Verde cluster randomized controlled trial, a compartmental mathematical model examines the dynamics of dengue infection with different levels of community participation, taking account of gender of respondent and exposure to temephos. RESULTS: Simulation of dengue endemicity showed community participation affected the basic reproductive number of infected people. The greatest short-term effect, in terms of people infected with the virus, was the combination of temephos intervention and community participation. There was no evidence of a protective effect of temephos 220 days after the onset of the spread of dengue. CONCLUSIONS: Male responses about community participation did not significantly affect modelled numbers of infected people and infectious mosquitoes. Our model suggests that, in the long term, community participation alone may have the best results. Adding temephos to community participation does not improve the effect of community participation alone.

Social Justice, Community Engagement, and Undergraduate STEM Education: Participatory Science as a Teaching Tool.

Social justice is increasingly being seen as relevant to the science curriculum. We examine the intersection of participatory science, social justice, and higher education in the United States to investigate how instructors can teach about social justice and enhance collaborations to work toward enacting social justice. Participatory science approaches, like those that collect data over large geographic areas, can be particularly useful for teaching students about social justice. Conversely, local-scale approaches that integrate students into community efforts can create powerful collaborations to help facilitate social justice. We suggest a variety of large-scale databases, platforms, and portals that could be used as starting points to address a set of learning objectives about social justice. We also describe local-scale participatory science approaches with a social justice focus, developed through academic and community partnerships. Considerations for implementing participatory science with undergraduates are discussed, including cautions about the necessary time investment, cultural competence, and institutional support. These approaches are not always appropriate but can provide compelling learning experiences in the correct circumstances.

Assessing early feasibility of a novel innovation to increase consumer partnership capability within an Australian health innovation organisation using a mixed-method approach.

OBJECTIVE: Engagement-capable health organisations recognise that consumer engagement (also known as patient engagement, consumer engagement, patient and public involvement) must occur at every level of the organisation if it is to be meaningful and genuine. Despite this aspiration, health organisations struggle to adopt, implement, and embody consumer engagement capability in a way that has yielded impact. The Partner Ring (PR) is an embedded model for building staff capability for consumer partnerships. It is hosted by an employed Patient Partner. PR was implemented at the Agency for Clinical Innovation in New South Wales, Australia. The aim of this study was to assess the feasibility (acceptability, demand and practicality) of this innovation to increase consumer engagement capability. DESIGN: One-group post-intervention mixed methods approach to assess feasibility. PARTICIPANTS: ACI staff engaged in the PR (n=40 of 89 members). DATA COLLECTION AND ANALYSIS: Qualitative data was collected through an artificial intelligence (AI)-driven interactive interview, with 40 responses received between 29 June and 12 July 2023. A framework analysis and Generative AI causal mapping were conducted to identify and visualise causal claims within the texts. Cost and session attendance collected from the same point in time supplemented the analysis. FINDINGS: Findings were categorised by the following feasibility constructs: acceptability, demand and practicality. Almost all the respondents indicated their intent to continue using the PR and outlined personal benefits and professional benefits. For example, (n=23, 57%) reacted positively to the psychological safety of the PR, and professionally people identified attendance increased their knowledge and skills (n=23, 57%). CONCLUSION: The PR is feasible and likely to be an acceptable innovation for building staff capability and consumer engagement skills across a large health system or organisation. It could be adopted or adapted by other jurisdictions.

Community Engagement, Jurisdictional Experience, and Previous Tobacco-Related Ordinances in Neighboring Communities as Drivers of Flavored Tobacco Bans in Los Angeles County.

We examined whether a community engagement approach and jurisdictional attributes were associated with local action to restrict the sale of flavored tobacco products in Los Angeles County during 2019-2022. We estimated crude and adjusted risk ratios to examine these associations. Jurisdictions that used an active community engagement approach to adopt a flavored tobacco ban ordinance, those with previous experience adopting other tobacco-related ordinances, and those located next to communities that have an existing tobacco retail license ordinance were more likely than jurisdictions without these attributes to adopt a new ordinance to restrict the sale of flavored tobacco products. Efforts to adopt such an ordinance were generally more successful in jurisdictions where community members were engaged and policy makers were familiar with the adoption of public health ordinances.

Emerging technologies in citizen science and potential for insect monitoring.

Emerging technologies are increasingly employed in environmental citizen science projects. This integration offers benefits and opportunities for scientists and participants alike. Citizen science can support large-scale, long-term monitoring of species occurrences, behaviour and interactions. At the same time, technologies can foster participant engagement, regardless of pre-existing taxonomic expertise or experience, and permit new types of data to be collected. Yet, technologies may also create challenges by potentially increasing financial costs, necessitating technological expertise or demanding training of participants. Technology could also reduce people's direct involvement and engagement with nature. In this perspective, we discuss how current technologies have spurred an increase in citizen science projects and how the implementation of emerging technologies in citizen science may enhance scientific impact and public engagement. We show how technology can act as (i) a facilitator of current citizen science and monitoring efforts, (ii) an enabler of new research opportunities, and (iii) a transformer of science, policy and public participation, but could also become (iv) an inhibitor of participation, equity and scientific rigour. Technology is developing fast and promises to provide many exciting opportunities for citizen science and insect monitoring, but while we seize these opportunities, we must remain vigilant against potential risks. This article is part of the theme issue 'Towards a toolkit for global insect biodiversity monitoring'.

Investigating consumers' experiences with community supported agriculture: Convergent parallel design methods.

Community-supported agriculture (CSA) represents a collaborative model where local farms and community members form partnerships to facilitate the direct delivery of fresh produce from farms to consumers. This study primarily investigates the experiences of current CSA members, focusing on the key factors influencing their retention intentions. Employing a convergent parallel mixed methods approach, this study gathers and analyzes both quantitative data (such as factors affecting members' retention intentions) and qualitative data (derived from interviews reflecting members' perceptions of their CSA experiences). The integration of these datasets provides a comprehensive understanding of the factors that shape CSA membership dynamics. The research findings underscore that Convenience, Product Quality, and Positive Interactions are pivotal factors that contribute to members' Intentions to continue their CSA memberships. These insights are crucial for enhancing the services provided to CSA members and hold significant implications for the broader scope of CSA membership research. This study not only fills a critical gap in understanding the Chinese CSA context but also contributes to the global discourse on sustainable agriculture practices and community engagement.

Public engagement for inclusive and sustainable governance of climate interventions.

The need for public engagement is increasingly evident as discussions intensify around emerging methods for carbon dioxide removal and controversial proposals around solar geoengineering. Based on 44 focus groups in 22 countries across the Global North and Global South (N = 323 participants), this article traces public preferences for a variety of bottom-up and top-down engagement practices ranging from information recipient to broad decision authority. Here, we show that engagement practices need to be responsive to local political cultures and socio-technical environments, while attending to the global dimensions and interconnectedness of the issues at stake. Establishing public engagement as a cornerstone of inclusive and sustainable governance of climate-intervention technologies requires (i) recognizing the diversity of forms and intensities of engaging, (ii) considering national contexts and modes of engagement, (iii) tailoring to technological idiosyncrasies, (iv) adopting power-sensitive practices, (v) accounting for publics' prior experience, (vi) establishing trust and procedural legitimacy and (vii) engaging with tensions and value disagreements.

PPIE in a technical research study: Using public involvement to refine the concept and understanding and move towards a multidimensional concept of disability.

BACKGROUND: Disability is often an essentialised and oversimplified concept. We propose refining this while incorporating the multidimensional nature of disability by increasing the use of existing survey questions and their corresponding data to enrich, broaden and inform understandings of disability. METHODS: We combined patient and public involvement and engagement (PPIE) with focus groups and concept mapping to collaboratively map disability survey questions into conceptual models of disability with six members of the public with lived experiences of disability. RESULTS: Using reflexive thematic analysis, we identified three qualitative themes and eight subthemes through a series of four PPIE activities: (1) understanding concepts of disability based on individual experience, subthemes: 1.1-preference for the biopsychosocial model, 1.2-'Reviewing' instead of mapping survey questions and 1.3-comparing questions to real life; (2) consistency between understanding needs and implementing adjustments, subthemes: 2.1-connecting preparation and operation, 2.2-inclusivity and adjustments in activities and 2.3-feedback for improving activities and (3) real-world applications-targeted awareness raising, subthemes: 3.1-who, where, what and how to share activity findings and results, 3.2-sharing with human resource and equality, diversity and inclusion professionals. CONCLUSION: Members of the public who collaborated in these activities felt empowered, engaged and supported throughout this study. This approach offers a model for other researchers to cede power to the public over the research aspects typically reserved for researchers. PATIENT OR PUBLIC CONTRIBUTION: We involved members of the public with lived experience throughout this study-co-design, co-facilitation, collaboratively mapping the disability or disability-related survey questions into conceptual models of disability, evaluation of the activities, co-analysis and co-authorship.

A culture shift to support public involvement and engagement in research.

The need to empower people to understand their health and well-being has never been greater. However, current research culture does not necessarily prioritize public involvement and engagement, and many scientists are left under-equipped to reap its benefits. Here, we outline both the positive need for purposeful public involvement and engagement in biomedical research and major systemic challenges. While some of our examples stem from the UK, we believe the learnings from them have global significance.

Research on the mechanism of consumer participation in value co-creation by innovative enterprises: An evolutionary game analysis framework.

The profound changes brought about by informatization and digitalization have given rise to the user-centered innovation concept, and value co-creation by enterprises has become an inevitable trend. It has become a pressing issue for scholars to analyze the mechanism of consumer participation in the value co-creation of innovative enterprises. In this paper, by establishing an evolutionary game model between consumers and innovative enterprises, we analyze in depth the mechanism of consumer participation in the value co-creation of innovative enterprises. The results show that the initial cooperation probability between consumers and innovative enterprises directly affects their strategic choices; the establishment of reward mechanisms makes consumers more inclined to choose active participation in value co-creation strategies; as the probability of non-cooperation between the two parties being reported increases, the probability of consumers and innovative enterprises choosing cooperation also increases. Studying the mechanism of consumer participation in the value co-creation of innovative enterprises has essential theoretical and practical significance for enterprises to achieve value creation, enhance competitiveness, and promote innovation. This study not only enriches and develops relevant theories but also provides guidance and support for the practice of enterprises, promoting sustainable development and successful co-creation.

Citizen scientists: Unveiling motivations and characteristics influencing initial and sustained participation in an agricultural project.

Citizen science, where non-specialists collaborate with scientists, has surged in popularity. While it offers an innovative approach to research involvement, the domain of agri-environmental research participation, particularly in terms of citizen recruitment and retention, remains relatively unexplored. To investigate how what factors influence initial and sustained participation in an agronomic citizen science project, we performed a large survey during the case-study "Soy in 1000 Gardens". We obtained data on citizens motivations, general values, environmental concern, prior citizen science experience, and knowledge regarding sustainable food consumption and garden management and applied a two-step selection model to correct for potential self-selection bias on our participation outcomes. Initially, citizen scientists appear to be mostly motivated by gaining knowledge, having fun social interactions and environmental concern with regards to the effects on others, while the desire for enhancing or protecting their ego is less prominent. They also display higher knowledge and self-transcending values. Sustained participants however, are significantly older and share a stronger sense of moral obligation than their dropped-out counterparts. Moreover, prior experience seems to positively influence the length of their participation, while higher knowledge has a positive impact on the amount of data contributed. These insights offer strategies for tailored engagement that should emphasize collective impact, align with intrinsic values, and foster a sense of moral duty, with potential to enhance agri-environmental citizen science initiatives' effectiveness in addressing environmental challenges.

A Translational Case Study of a Multisite COVID-19 Public Health Intervention Across Sequenced Research Trials: Embedding Implementation in a Community Engagement Phased Framework.

Through a COVID-19 public health intervention implemented across sequenced research trials, we present a community engagement phased framework that embeds intervention implementation: (1) consultation and preparation, (2) collaboration and implementation, and (3) partnership and sustainment. Intervention effects included mitigation of psychological distress and a 0.28 increase in the Latinx population tested for SARS-CoV-2. We summarize community engagement activities and implementation strategies that took place across the trials to illustrate the value of the framework for public health practice and research. (Am J Public Health. 2024;114(S5):S396-S401. https://doi.org/10.2105/AJPH.2024.307669).

Engaging communities as partners in health crisis response: a realist-informed scoping review for research and policy.

BACKGROUND: Health is increasingly affected by multiple types of crises. Community engagement is recognised as being a critical element in successful crisis response, and a number of conceptual frameworks and global guideline documents have been produced. However, little is known about the usefulness of such documents and whether they contain sufficient information to guide effective community engagement in crisis response. We undertake a scoping review to examine the usefulness of conceptual literature and official guidelines on community engagement in crisis response using a realist-informed analysis [exploring contexts, mechanisms, and outcomes(CMOs)]. Specifically, we assess the extent to which sufficient detail is provided on specific health crisis contexts, the range of mechanisms (actions) that are developed and employed to engage communities in crisis response and the outcomes achieved. We also consider the extent of analysis of interactions between the mechanisms and contexts which can explain whether successful outcomes are achieved or not. SCOPE AND FINDINGS: We retained 30 documents from a total of 10,780 initially identified. Our analysis found that available evidence on context, mechanism and outcomes on community engagement in crisis response, or some of their elements, was promising, but few documents provided details on all three and even fewer were able to show evidence of the interactions between these categories, thus leaving gaps in understanding how to successfully engage communities in crisis response to secure impactful outcomes. There is evidence that involving community members in all the steps of response increases community resilience and helps to build trust. Consistent communication with the communities in time of crisis is the key for effective responses and helps to improve health indicators by avoiding preventable deaths. CONCLUSIONS: Our analysis confirms the complexity of successful community engagement and the need for strategies that help to deal with this complexity to achieve good health outcomes. Further primary research is needed to answer questions of how and why specific mechanisms, in particular contexts, can lead to positive outcomes, including what works and what does not work and how to measure these processes.

Exploring existing malaria services and the feasibility of implementing community engagement approaches amongst conflict-affected communities in Cameroon: a qualitative study.

BACKGROUND: Cameroon is one of the countries with the highest burden of malaria. Since 2018, there has been an ongoing conflict in the country, which has reduced access to healthcare for populations in affected regions, and little is known about the impact on access to malaria services. The objective of this study was to understand the current situation regarding access to malaria services in Cameroon to inform the design of interventions to remove barriers and encourage the use of available services. METHODS: A qualitative research study was carried out to understand the barriers preventing communities accessing care, the uptake of community health worker (CHW) services, and to gather perceptions on community engagement approaches, to assess whether these could be an appropriate mechanism to encourage uptake of community health worker (CHW) services. Twenty-nine focus group discussions and 11 in-depth interviews were carried out between May and July 2021 in two regions of Cameroon, Southwest and Littoral. Focus group discussions were held with CHWs and community members and semi-structured, in-depth interviews were conducted with key stakeholders including regional government staff, council staff, community leaders and community-based organisations. The data were analysed thematically; open, descriptive coding was combined with exploration of pre-determined investigative areas. RESULTS: The study confirmed that access to healthcare has become increasingly challenging in conflict-affected areas. Although the Ministry of Health are providing CHWs to improve access, several barriers remain that limit uptake of these services including awareness, availability, cost, trust in competency, and supply of testing and treatment. This study found that communities were supportive of community engagement approaches, particularly the community dialogue approach. CONCLUSION: Communities in conflict-affected regions of Cameroon continue to have limited access to healthcare services, in part due to poor use of CHW services provided. Community engagement approaches can be an effective way to improve the awareness and use of CHWs. However, these approaches alone will not be sufficient to resolve all the challenges faced by conflict-affected communities when accessing health and malaria services. Additional interventions are needed to increase the availability of CHWs, improve the supply of diagnostic tests and treatments and to reduce the cost of treatment for all.

Enhancing vaccination uptake through community engagement: evidence from China.

With growing recognition of the importance of community engagement in addressing public health challenges, its role in promoting healthy behaviors and preventing infectious diseases has gained attention. However, vaccination coverage remains a significant concern in many developing countries. While previous studies have linked community engagement to positive health outcomes, there is a gap in understanding its influence on individual vaccination choices, particularly in the context of developing countries. Utilizing data from the 2021 Chinese General Social Survey (CGSS), this study examines the impact of community engagement on COVID-19 and flu vaccination uptake among 7281 individuals. Community engagement, measured by community vaccination notifications, serves as the key independent variable. The study employs Ordinary Least Squares (OLS) regression and Propensity Score Matching (PSM) methods to analyze the relationship between community engagement and vaccination behavior. The analysis reveals a positive association between community engagement and vaccination rates. Specifically, individuals receiving notifications were more likely to get the COVID-19 vaccine compared to non-recipients (vaccination rates: 100% vs. 53.3%), and flu vaccination rates were also significantly higher among those notified (2.7% vs. 1.9%). Mechanism analysis suggests that individuals receiving community notifications are more aware of the benefits of vaccination, leading to higher vaccination rates among this group. This study underscores the effectiveness of community engagement strategies in promoting positive vaccination behavior among individuals in China. By enhancing awareness and trust in immunization, community engagement initiatives play a crucial role in shaping health behaviors and improving vaccination uptake. These findings emphasize the importance of integrating community engagement approaches into public health interventions to address vaccination challenges.

Health equity in urban and rural settings: implementation of the place standard tool in Spain.

The physical, social, and economic characteristics of neighborhoods and municipalities determine the health of their residents, shaping their behaviors and choices regarding health and well-being. Addressing local environmental inequalities requires an intersectoral, participatory, and equity-focused approach. Community participation plays a vital role by providing deeper insights into local contexts, integrating community knowledge and values into processes, and promoting healthier, fairer, and more equitable actions. In recent years, various tools have been developed to assess places and transform them into health-promoting settings. One such tool, the Place Standard Tool (PST), facilitates discussions on Social Determinants of Health grouped into 14 themes, serving as a starting point for local health interventions. In this study, that took place between August 2019 and February 2020, we described the resident's perceptions of two municipalities in the Valencian Community, Spain, using the validated Spanish version of the PST. A mixed-method convergent-parallel design was used to gain a holistic insight into residents' experiences concerning their physical, economic, and social environment. A total of 356 individuals from both municipalities participated in the study through discussion groups, structured interviews, and online survey. Descriptive analysis of the individual questionnaire answers was conducted, and differences between municipalities were explored. Qualitative thematic analysis was conducted on structured interviews and discussion groups. Quantitative and qualitative data were integrated to facilitate their comparison and identify areas of convergence or divergence in the findings. Overall, rural areas received more favorable evaluations compared to urban ones. Public Transport as well as Work and Local Economy were consistently rated the lowest across all groups and contexts, while Identity and Belonging received the highest ratings. In the urban area, additional negative ratings were observed for Traffic and Parking, Housing and Community, and Care and Maintenance. Conversely, Identity and Belonging, Natural Spaces, Streets and Spaces, Social Interaction, and Services emerged as the highest-rated themes overall. In the rural context, positive evaluations were given to Walking or Cycling, Traffic and Parking, Housing and Community, and Influence and Sense of Control. Significant differences (p < 0.01) between urban and rural settings were observed in dimensions related to mobility, spaces, housing, social interaction, and identity and belonging. Our study illustrated the capacity of the PST to identifying aspects within local settings that influence health, revealing both positive and challenging factors. Successful implementation requires appropriate territorial delineation, support from local authorities, and effective management of expectations. Furthermore, the tool facilitated community participation in decision-making about local environments, promoting equity by connecting institutional processes with citizen needs.