What Lies Beneath? The Role of Community Engagement in Translating COVID-19 Research Findings to Policy-Makers.

BACKGROUND: Community engagement is key to developing local and context-specific strategies for the prevention and control of COVID-19. However, expedited research design and approval in the early days of the pandemic may have limited the opportunities for community members to influence pandemic-related research. In this study, we sought to understand how a Community Engagement Group (CEG) could impact a large longitudinal COVID-19 research project (Optimise), when involved solely in the interpretation and knowledge translation phases of the research. METHODS: Seven community members were recruited for the CEG, representing a diverse range of groups. Each month, Optimise data of topical importance were compiled into a draft report. The CEG discussed the draft report at their monthly meeting and members' contributions were incorporated into the final report for distribution to policy-makers. In this study, a document analysis was undertaken of ten consecutive reports produced between February and November 2021. Each report was compared pre- and post- the inclusion of CEG contributions, which were then analysed using thematic analysis. RESULTS: Community engagement in the interpretation and knowledge translation phases of Optimise had positive impacts on reports for policy-makers, including grounding the empirical findings in broader community perspectives, identifying policy issues affecting different groups and contributing unique insights beyond the empirical findings. Overall, the CEG contributions demonstrated the complexity of lived experience lying beneath the empirical data. CONCLUSION: Community engagement in the translation of the Optimise findings resulted in research reports to policy-makers that were reflective of a broader range of community perspectives, and that provided potential solutions to emerging policy issues related to COVID-19. This study adds to the evidence base about the impact of community engagement in the later interpretation and knowledge translation phases of research, particularly in the context of reporting to policy-makers during a public health emergency.

Grappling With the Inclusion of Patients and the Public in Consensus Building: A Commentary on Inclusion, Safety, and Accessibility Comment on "Evaluating Public Participation in a Deliberative Dialogue: A Single Case Study".

Deliberative dialogue (DD) may be relatively new in health research but has a rich history in fostering public engagement in political issues. Dialogic approaches are future-facing, comprising structured discussions and consensus building activities geared to the collective identification of actionable and contextualized solutions. Relying heavily on a need for co-production and shared leadership, these approaches seek to garner meaningful collaborations between researchers and knowledge users, such as healthcare providers, decision-makers, patients, and the public. In this commentary, we explore some of the challenges, successes, and opportunities arising from public engagement in DD, drawing also upon insights gleaned from our own research, along with the case study presented by Scurr and colleagues. Specifically, we seek to expand discussions related to inclusion, power, and accessibility in DD, highlight the need for scholarship that addresses the epistemic, methodological, and practical aspects of patient and public engagement within dialogic methods, and identify promising practices.

Patient and public involvement in preclinical and medical research: Evaluation of an established programme in a Discovery-Based Medical Research Institute.

BACKGROUND AND CONTEXT: Involving people with lived experience of health conditions and the public (consumers) in health research is supported by policy, practice and research funding schemes. However, consumer involvement programmes in discovery-based preclinical research settings are uncommon. Few formal evaluations of these programmes are reported in the literature. OBJECTIVE: This study aimed to evaluate an established patient and public involvement programme operating in a major Australian Discovery-Based Medical Research Institute (DBMRI) to inform programme development and the wider field. DESIGN AND PARTICIPANTS: A multimethods programme evaluation incorporating demographic, descriptive and qualitative data obtained through consumer/researcher co-developed online surveys and semistructured virtual interviews. Programme participants (n = 111) were invited to complete an online survey seeking feedback on their experience of involvement, programme processes and perceived impacts. A purposive sample of 25 participants was interviewed. Descriptive data were analysed using explanatory statistics and qualitative data from surveys and interviews were thematically analysed. RESULTS: This consumer involvement programme was found to be useful and meaningful for most participants, with specific examples of perceived added value. Consumers most commonly engaged with researchers to inform research development, prepare funding applications or strengthen lay communication of science. Genuine consumer-researcher interactions, relationship development and mutual respect were key elements in a positive experience for participants. Opportunities to 'give back', to learn and to ground research in lived experience were identified programme strengths and benefits. Developing researcher training in how to work with consumers, increasing the diversity of the consumer group membership and expanding the range of consumer activities were identified opportunities for improvement. Organisational support and adequate programme resourcing were identified as key enablers. CONCLUSION: Discovery-based preclinical research is often viewed as being distant from clinical application; therefore, consumer involvement may be considered less relevant. However this study identified value in bringing a strong consumer voice to the discovery-based research process through a coordinated, organisation-wide approach with the potential for application in similar preclinical research settings. PATIENT OR PUBLIC CONTRIBUTION: Four consumer partners from the DBMRI Consumer Advisory Panel were actively engaged in developing this programme evaluation. Specifically, these consumer partners co-developed and pilot-tested surveys and interview guides, reviewed and commented on project data analysis and reporting and also contributed as co-authors by editing the manuscript.

The Bidirectional Engagement and Equity (BEE) Research Framework to Guide Community-Academic Partnerships: Developed From a Narrative Review and Diverse Stakeholder Perspectives.

BACKGROUND: The engagement of community partners in equitable partnerships with academic teams is necessary to achieve health equity. However, there is no standardized approach to support bidirectional engagement among research stakeholders in the context of partnership equity at each phase of the research process. OBJECTIVE: We describe the development of a systematic framework along with competencies and tools promoting bidirectional engagement and equity within community-academic partnerships at each phase of the research process. DESIGN: We conducted a four-step research process between November 2020 and December 2023 for framework development: (1) a narrative literature review; (2) expansion of existing bidirectional, equitable framework; (3) a scientific review with two groups of cognitive interviews (five community engagement researchers and five community leaders and members); and (4) three community-based organization leader focus groups. Thematic analysis was used to analyse focus group data. RESULTS: Using results of each step, the framework was iteratively developed, yielding four phases of the bidirectional engagement and equity (BEE) research framework: Relationship building and assessment of goals and resources (Phase I); form a community-academic partnership based on shared research interests (may include multilevel stakeholders) (Phase II); develop a research team comprising members from each partnering organization (Phase III); and implement the six-step equitable research process (Phase IV). Bidirectional learning and partnership principles are at the core of the partnership, particularly in Phases II-IV. Competencies and tools for conducting an equitable, engaged research process were provided. DISCUSSION: This conceptual framework offers a novel, stepwise approach and competencies for community-academic partners to successfully partner and conduct the research process equitably. CONCLUSION: The BEE research framework can be implemented to standardize the conduct of an equitable, engaged research process within a community-academic partnership, while improving knowledge and trust across partners and, ultimately, an increased return on investment and sustainability to benefit both partners in the area of health outcomes and ultimately health equity. PATIENT OR PUBLIC CONTRIBUTION: The development of this framework was co-led with a community organization in which two leaders in the organization were equitably involved in each phase of the research process, including grant development, study design, participant recruitment, protocol development for focus groups and community and researcher review, framework design and content and dissemination of this manuscript as a co-author. For grant development, the community leader completed the give-get grid components for them as a partner. They also wrote up their lived experience in the research process for the progress report. For the focus groups, one community leader co-led the focus group with the academic partner. For the narrative review, the community leaders did not actively conduct the narrative review but observed the process through the academic partners. One community leader wrote the section 'relationship building' and 'bidirectional learning' sections with the assistance of the academic partner, while they both equally provided input on other sections of the manuscript alongside academic partners. The community leaders have extensive experience in leading programmes, along with partnering with researchers to address health equity issues and improve health outcomes.

An unclosed loop: Perspectives of community engagement in infectious disease clinical trials in sub-Saharan Africa.

BACKGROUND: Community engagement (CE) is pertinent to ethically and scientifically rigorous infectious disease clinical trials in sub-Saharan Africa (SSA). However, there are critiques that CE is not properly embedded in research processes and that there is uncertainty about what CE entails. The aim of this study was to gain an understanding of CE in infectious disease clinical trials in SSA, specifically factors affecting CE and existing strategies for engaging with communities. METHODS: Semi-structured telephone interviews were conducted with 20 community and clinical trial (CT) stakeholders who worked in SSA. The audio-recorded interviews were transcribed verbatim and analysed inductively using thematic analysis. RESULTS: Themes are as follows: 1) Communities are abandoned research-entities-a disconnect between scientific teams and communities was observed and knowledge translation was not prioritised at the community-level. 2) Us and them: community engagement teams vs investigators-CE teams expressed that researchers did not account for CE processes and often did not involve CE staff in their planning, and felt that their roles were not valued. 3) Ethical considerations: concerns and gaps-there were concerns that procedures were not standardised and that ethics processes were not adhered to. 4) Opportunities for improved CE practices-training needs were expressed, including for standardised practices, ethics, and for developing a holistic understanding of collaborating with communities. CONCLUSION: CE role players require intensive training to ensure ethical CE and that communities are treated with dignity. This includes 1) using collaborative strategies involving research and CE staff, 2) protocol-adherence that recognises CE as pertinent, 3) viewing communities as complex and building relationships that are sustainable, and 4) ensuring that knowledge translation is considered at a community-level. Further research is necessary to investigate potential training programmes that integrate these elements.

The Impact of Community Engagement in the Design and Implementation of the Flint Registry.

BACKGROUND: The Flint water crisis (FWC) was a public health tragedy caused by crumbling infrastructure, subverted democracy, and indifference toward a predominantly poor and Black community that resulted in lead-in-water exposure, Legionnaires' disease, and emotional and health-related trauma. Through the cooperation of community partners, the Flint Registry (FR) was conceived to track long-term health and improve public health via service connections. OBJECTIVES: This study sought to share the FR's community-partnered, multi-tiered engagement strategy and determine the efficacy of this strategy to engage the community and reach Flint residents. METHODS: Community engagement and impact were measured by collecting and describing feedback from the community engagement strategies and by comparing the demographics of the enrollees recruited through community-engaged recruitment (CER) and non-CER methods. Enroll-ees indicated how they heard about the FR; CER involved direct interaction with a community member. RESULTS: Community engagement strategies incorporated approximately 1,200 people and 7 funded organizations, impacting 22 key areas of FR design and implementation. More than 50% of enrollees heard about the FR through CER methods. They were, on average, more likely to be younger, female, Black/African American, and living outside of Flint during the FWC. CONCLUSIONS: Community engagement elevated voices of those impacted by the FWC. CER methods were as effective as non-CER methods. Although there were no differences in screened measures of social vulnerability, there were in age, gender, and race. CER methods may increase participation and build trust in populations which historically are hesitant to participate in public health efforts.

The Community is the Cure: How African American Washington, DC Residents Informed Opioid Treatment Engagement.

BACKGROUND: Recent data indicate rising opioid overdose deaths among African American residents of Washington, DC. OBJECTIVES: We highlight a community-informed approach to assessing attitudes toward opioid use disorder treatment among DC residents (February 2019 to March 2020). METHODS: A listening tour with trusted community leaders led to the formation of a Community Advisory Board (CAB). When the COVID-19 pandemic commenced in March 2020, community dialogues became exclusively virtual. The CAB partnered with academic leaders to co-create project mission and values and center the community's concerns related to opioid use and its causes, treatment structure, and facilitators of effective engagement. RESULTS: Interview guides were created for the engagement of community members, using values highlighted by the CAB. The CAB underscored that in addition to opioid problems, effective engagement must address community experience, collective strengths/resilience, and the role of indigenous leadership. CONCLUSIONS: Engaging community prior to project implementation and maintaining alignment with community values facilitated opioid use disorder assessments. Community-informed assessments may be critical to building community trust.

2021 Community Engagement Studio Virtual Training Summit: Increasing the Diversity of Stakeholders Engaged in Research.

BACKGROUND: There are few methods that focus on engaging racial and ethnic minorities in research. The Meharry-Vanderbilt Community Engaged Research Core partnered with the University of Utah, the University of Michigan, and community/patient partners to convene a virtual summit to share the Community Engagement Studio (CE Studio) model, a structured and widely-used approach that facilitates community engagement in research. OBJECTIVES: The CE Studio Virtual Training Summit (Summit) goal was to prepare multi-stakeholder (e.g., researchers, community members) research teams to engage more racial/ethnic minorities in CE studios. METHODS: Summit planning included (1) agenda development, including CE Studio training and a live CE Studio demonstration; (2) summit advertisement across several networks, including minority-serving institutions; and (3) development of pre-and post-Summit evaluations. RESULTS: Among 50 registrants (76.7% academicians) that completed evaluations, more than 65% planned to increase engagement of racial/ethnic minorities in research and implement CE Studios as a result of the Summit. Increased confidence in all CE training areas was reported, including in conducting an effective CE Studio planning meeting (32.1% pre-Summit/90.3% post-Summit) and identifying and preparing patient/community stakeholders for engagement as CE Studio experts (46.4% pre-Summit/93.6% post-Summit). CONCLUSIONS: Virtual CE Studio training that includes multi-stakeholder planning partners can be an effective method for introducing the CE Studio model and preparing multi-stakeholder research teams to engage racial and ethnic minorities in CE Studios. This is particularly salient given that effective community engaged research methods and best practices are not currently being distributed through research programs at a pace consistent with the demands.

Evaluation of Public Involvement in Doctoral Research Using a Four-Dimensional Theoretical Framework.

BACKGROUND: Working together and co-production with public advisors have become popular among health researchers. This practice extends to doctoral researchers who involve public advisors at different stages of their research or throughout their doctoral journey. OBJECTIVE: A doctoral researcher and two public advisors jointly evaluated public involvement in doctoral research. METHODS: Using the established public involvement evaluation framework by Gibson and colleagues, public advisors and a doctoral researcher mapped and evaluated their experiences of public involvement in doctoral research. The four-dimensional framework allowed the authors to reflect on (1) the strength of the public voice, (2) the number of ways in which public advisors had an opportunity to get involved, (3) whether the discussion was about the public or organisation's (doctoral researcher, university or funder) concerns and (4) if the organisation changed or resisted feedback. Results are presented in a diagrammatic and narrative way. RESULTS: Public advisors saw themselves as having a stronger voice in doctoral research than the doctoral researcher perceived. All agreed that there existed multiple ways for public advisors to be involved. Public advisors' feedback was taken on board, but it was also limited due to restrictions of what the doctoral programme allowed. CONCLUSION: Public advisors ensured that the doctoral research was more relevant to the public. The ongoing involvement also shaped the doctoral researcher's thinking and views. PATIENT AND PUBLIC INVOLVEMENT: Two public advisors were involved throughout the 3 years of this doctoral research. They co-evaluated this involvement and are co-authors of this paper.

Engaging With Health Consumers in Scientific Conferences-As Partners not Bystanders.

INTRODUCTION: It is now widely recognised that engaging consumers in research activities can enhance the quality, equity and relevance of the research. Much of the commentary about consumer engagement in research focuses on research processes and implementation, rather than dissemination in conference settings. This article offers reflections and learnings from consumers, researchers and conference organisers on the 12th Health Services Research Conference, a biennial conference hosted by the Health Services Research Association of Australia and New Zealand (HSRAANZ). METHOD: We were awarded funds via a competitive application process by Bellberry Limited, a national not-for-profit agency with a focus on improving research quality, to incorporate consumer engagement strategies in conference processes and evaluate their impact. FINDINGS: Strategies included consumer scholarships, a buddy system, designated quiet space and consumer session co-chairs; the reflections explored in this paper were collected in the funded, independent evaluation. Our insights suggest a need for more structured consumer involvement in conference planning and design, as well as the development of specific engagement strategies. CONCLUSION: To move toward active partnership in scientific conference settings, our experience reinforces the need to engage consumers as members in designing and conducting research and in presenting research and planning conference content and processes. PUBLIC CONTRIBUTION: Consumer engagement in research dissemination at conferences is the focus of this viewpoint article. Consumers were involved in the conception of this article and have contributed to authorship at all stages of revisions and edits.

Fostering citizen-engaged HIV implementation science.

INTRODUCTION: Successful implementation of evidence-based practices depends on contextual factors like stakeholder engagement, the socio-political environment, resource availability, and stakeholders' felt needs and preferences. Nevertheless, inequities in implementation exist and undermine efforts to address HIV in marginalized key populations. Implementation science shows promise in addressing such inequities in the HIV response, but can be limited without meaningful engagement from citizens or communities. DISCUSSION: We define the concept of a citizen-engaged HIV implementation science as one that involves citizens and communities deeply in HIV implementation science activities. In this commentary, we discuss how citizen science approaches can be leveraged to spur equity in HIV implementation science. Drawing on three areas previously defined by Geng and colleagues that serve to drive impactful implementation science in the HIV response, we discuss how citizens can be engaged when considering "whose perspectives?", "what questions are being asked?" and "how are questions asked?". With respect to "whose perspectives?" a citizen-engaged HIV implementation science would leverage participatory methods and tools, such as co-creation, co-production and crowdsourcing approaches, to engage the public in identifying challenges, solve health problems and implement solutions. In terms of "what questions are being asked?", we discuss how efforts are being made to synthesize citizen or community-led approaches with existing implementation science frameworks and approaches. This also means that we ensure communities have a say in interrogating and deconstructing such frameworks and adapting them to local contexts through participatory approaches. Finally, when considering "how are questions asked?", we argue for the development and adoption of broad, guiding principles and frameworks that account for dynamic contexts to promote citizen-engaged research in HIV implementation science. This also means avoiding narrow definitions that limit the creativity, innovation and ground-up wisdom of local citizens. CONCLUSIONS: By involving communities and citizens in the development and growth of HIV implementation science, we can ensure that our implementation approaches remain equitable and committed to bridging divides and ending AIDS as a public health threat. Ultimately, efforts should be made to foster a citizen- and community-engaged HIV implementation science to spur equity in our global HIV response.

The Development of Principles for Patient and Public Involvement (PPI) in Preclinical Spinal Cord Research: A Modified Delphi Study.

INTRODUCTION: There is currently limited guidance for researchers on Patient and Public Involvement (PPI) for preclinical spinal cord research, leading to uncertainty about design and implementation. This study aimed to develop evidence-informed principles to support preclinical spinal cord researchers to incorporate PPI into their research. METHODS: This study used a modified Delphi method with the aim of establishing consensus on a set of principles for PPI in spinal cord research. Thirty-eight stakeholders including researchers, clinicians and people living with spinal cord injury took part in the expert panel. Participants were asked to rate their agreement with a series of statements relating to PPI in preclinical spinal cord research over two rounds. As part of Round 2, they were also asked to rate statements as essential or desirable. RESULTS: Thirty-eight statements were included in Round 1, after which five statements were amended and two additional statements were added. After Round 2, consensus (> 75% agreement) was reached for a total of 27 principles, with 13 rated as essential and 14 rated as desirable. The principles with highest agreement related to diversity in representation among PPI contributors, clarity of the purpose of PPI and effective communication. CONCLUSION: This research developed a previously unavailable set of evidence-informed principles to inform PPI in preclinical spinal cord research. These principles provide guidance for researchers seeking to conduct PPI in preclinical spinal cord research and may also inform PPI in other preclinical disciplines. PATIENT AND PUBLIC INVOLVEMENT STATEMENT: This study was conducted as part of a project aiming to develop PPI in preclinical spinal cord injury research associated with an ongoing research collaboration funded by the Irish Rugby Football Union Charitable Trust (IRFU CT) and the Science Foundation Ireland Centre for Advanced Materials and BioEngineering Research (SFI AMBER), with research conducted by the Tissue Engineering Research Group (TERG) at the RCSI University of Medicine and Health Sciences. The project aims to develop an advanced biomaterials platform for spinal cord repair and includes a PPI Advisory Panel comprising researchers, clinicians and seriously injured rugby players to oversee the work of the project. PPI is included in this study through the involvement of members of the PPI Advisory Panel in the conceptualisation of this research, review of findings, identification of key points for discussion and preparation of the study manuscript as co-authors.

Community-led monitoring and the role of Ritshidze in improving the quality of primary healthcare in South Africa.

Community-led monitoring (CLM) of health services is a mechanism of community participation and accountability that is increasingly advocated across the globe. In South Africa (SA), a large-scale community-led monitoring initiative called Ritshidze ('saving our lives') was established in 2019. Steered by a coalition of civil society organisations representing people living with HIV, Ritshidze monitors just over 400 primary healthcare (PHC) facilities in 8 provinces on a quarterly basis. In this piece we describe the purposes and design features and the five-step approach to CLM of the Ritshidze model. We also highlight some of the positive changes achieved, and reflect on possible reasons for successes. In doing so, we aim to draw attention to this significant national initiative and its potential as a mechanism of social accountability in SA.

Development and Evaluation of a Framework for Authentic Online Co-Design: Partnership-Focussed Principles-Driven Online Co-Design.

INTRODUCTION: Co-design in health research involves patient and public involvement and engagement (PPIE) in intervention or service design. Traditionally, co-design is undertaken in-person; however, exploring online delivery is warranted. PPIE in co-design must be considered carefully, and assumptions that in-person approaches will transition automatically to an online environment should be avoided. Currently, there are a lack of evidence-informed approaches to facilitating co-design online. This study aimed to develop and evaluate a framework for authentically adapting health research co-design into an online environment. MATERIALS AND METHODS: The initial framework was developed through a literature review, synthesis of in-person co-design principles, and alignment of online strategies. The framework was then applied to a co-design project with 10 participants across relevant PPIE groups (end-users [n = 4], clinicians [n = 2], coaches [n = 2] and clinician-researchers [n = 2]). Participants' experiences of the online co-design process were evaluated via a mixed-methods design using surveys and semi-structured interviews. Evaluation data were analysed using descriptive statistics and reflexive thematic analysis to inform a revised framework. RESULTS: The developed framework, Partnership-focussed Principles-driven Online co-Design (P-POD) was used to design eight 90 min online co-design workshops. Evaluation data involved 46 survey responses, and eight participants were interviewed on project completion. Survey data indicated that the process was satisfying, engaging and adhered to the P-POD framework. Themes derived from interview data describe a respectful and collaborative online culture, valuing of diverse perspectives and space for healthy debate, how power was perceived as being shared but not equal and multiple definitions of success within and beyond the process. A final, refined P-POD framework is presented. CONCLUSION: With evaluation of the initial P-POD framework showing evidence of adherence to co-design principles, positive participant experiences and goal achievement for both the project and the participants, the refined P-POD framework may be used and evaluated within future intervention or service design. PATIENT OR PUBLIC CONTRIBUTION: This study involved the participants (end-users, clinicians and service providers) in the co-design process described, interpretation of the results through member-checking interview responses, assisting in development of the final framework and as co-authors for this manuscript.

Community engagement for stakeholder and community trust in healthcare: Short-term evaluation findings from a nationwide initiative in Lao PDR.

BACKGROUND: Trust remains a critical concept in healthcare provision, but little is known about the ability of health policy and interventions to stimulate more trusting relationships between communities and the health system. The CONNECT (Community Network Engagement for Essential Healthcare and COVID-19 Responses Through Trust) Initiative in Lao PDR provided an opportunity to assess the community-level impact of a trust-building community engagement approach. METHODS: A mixed-method process evaluation was implemented from 10/2022-12/2023 among 14 diverse case study communities in four provinces across Lao PDR. Data collection involved two rounds of census surveys (3161 observations incl. panel data from 618 individuals) including an 8-item trust scale, 50 semi-structured interviews with villagers, and 50 contextualizing key informant interviews. The two data collection rounds were implemented before and three months after village-based CONNECT activities and helped discern impacts among activity participants, indirectly exposed villagers, and unexposed villagers in a difference-in-difference analysis. RESULTS: Stakeholders attested strong support for the CONNECT Initiative although community-level retention of trust-related themes from the activities was limited. Quantitative data nevertheless showed that, at endline, the 8-item trust index (from [-8 to +8]) increased by 0.95 points from 4.44 to 5.39 and all trust indicators were universally higher. Difference-in-difference analysis showed that villagers exposed to the CONNECT activities had a 1.02-index-point higher trust index compared to unexposed villagers. Trust impacts improved gradually over time and were relatively more pronounced among men and ethnic minority groups. CONCLUSIONS: The CONNECT Initiative had considerable direct and systemic effects on community members' trust in their local health centers in the short term, which arose from strong stakeholder mobilization and gradual institutional learning. Relational community engagement approaches have the potential to create important synergies in health policy and broader cross-sectorial strategies, but also require contextual grounding to identify locally relevant dimensions of trust.

Community health action and COVID-19 in Barcelona neighbourhoods: responses and challenges.

The COVID-19 pandemic exacerbated pre-existing social, economic and political inequalities. The evidence describes the use of community engagement approaches to support appropriate COVID-19 prevention and control measures. We aimed to delve deeper into the community response to COVID-19 in Barcelona neighbourhoods with different pre-existing levels of development of community health action (CHA). A qualitative phenomenological study was conducted in six Barcelona neighbourhoods with different types of CHAs. The sample included 37 in-depth interviews with community agents with good knowledge of the territory. The content analysis focused on three dimensions: symbolic (conceptions motivating action), substantive (the content and resources of the action) and operational (interactions between agents). Regardless of their CHA typology, all neighbourhoods responded to the needs generated by the pandemic. Symbolic: strong-CHA development, characterized by well-established participatory structures, facilitated responses to the crisis. In medium-CHA neighbourhoods, the emergency exacerbated previous tensions. In emerging-CHA neighbourhoods, previous participatory structures, although not health-specific, favoured the coordination of responses. Substantive: technology influenced the way CHA activities were conducted. Operative: in the strong-CHA neighbourhood, new participants were able to join previous participatory structures. In medium-CHA neighbourhoods, power dynamics hindered coordination. In conclusion, strong CHA can play a key role in addressing the adverse consequences of social and health crisis. Empowering citizens and communities should be a primary objective of public policy that integrates the 'health-in-all-policies' approach. This approach entails allocating public resources to strengthen the role of community action and power.

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.

Strategies for involving patients and the public in scaling initiatives in health and social services: A scoping review.

BACKGROUND: Scaling in health and social services (HSS) aims to increase the intended impact of proven effective interventions. Patient and public involvement (PPI) is critical for ensuring that scaling beneficiaries' interests are served. We aimed to identify PPI strategies and their characteristics in the science and practice of scaling in HSS. METHODS: In this scoping review, we included any scaling initiative in HSS that used PPI strategies and reported PPI methods and outcomes. We searched electronic databases (e.g., Medline) from inception to 5 February 2024, and grey literature (e.g., Google). Paired reviewers independently selected and extracted eligible reports. A narrative synthesis was performed and we used the PRISMA for Scoping Reviews and the Guidance for Reporting Involvement of Patients and the Public (GRIPP2). FINDINGS: We included 110 unique reports out of 24,579 records. In the past 5 years, the evidence on PPI in scaling has increased faster than in any previous period. We found 236 mutually nonexclusive PPI strategies among 120 scaling initiatives. Twenty-four initiatives did not target a specific country; but most of those that did so (n = 96) occurred in higher-income countries (n = 51). Community-based primary health care was the most frequent level of care (n = 103). Mostly, patients and the public were involved throughout all scaling phases (n = 46) and throughout the continuum of collaboration (n = 45); the most frequently reported ethical lens regarding the rationale for PPI was consequentialist-utilitarian (n = 96). Few papers reported PPI recruitment processes (n = 31) or incentives used (n = 18). PPI strategies occurred mostly in direct care (n = 88). Patient and public education was the PPI strategy most reported (n = 31), followed by population consultations (n = 30). CONCLUSIONS: PPI in scaling is increasing in HSS. Further investigation is needed to better document the PPI experience in scaling and ensure that it occurs in a meaningful and equitable way. PATIENT AND PUBLIC CONTRIBUTION: Two patients were involved in this review. They shared decisions on review questions, data collection instruments, protocol design, and findings dissemination. REVIEW REGISTRATION: Open Science Framework on 19 August 2020 (https://osf.io/zqpx7/).