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This article describes a Patient and Public Involvement (PPI) led creative workshop space held within a clinical trial of a talking therapy for distressing voices (AVATAR2). PPI adds significant value to clinical research and ensures the work is meaningful to patients and their supporters. However, known issues include tokenism, a common power imbalance between PPI colleagues and researchers and a lack of opportunity for PPI to shape the research. PPI has played a key role at all stages of the AVATAR2 trial, including design, recruitment of staff and participants, data collection, analysis, and dissemination. An active and creative group of people was established, with over 30 members flexibly involved across all four sites. PPI group members were from diverse backgrounds, with lived experience of mental health conditions and recovery, and including carers. During this work, PPI colleagues identified that they would value a creative space which would help to promote the study but extend beyond an exclusive focus on trial deliverables. A regular creative workshop was established to support PPI colleagues in their creative work, including material such as poetry, blogs, art and podcasts. PPI colleagues and trial staff have cowritten a reflective piece to share their experiences on the impact of the creative workshops, organised into four themes. We found the workshops to be a powerful tool for forging relationships among trial staff and PPI colleagues, while also fostering personal development. We reflected on how the workshops built up the confidence of attendees and supported demanding trial activities such as public speaking. Finally, we discussed the impact of the workshops on wider trial culture, by upholding the values of the team and challenging the status quo., Competing Interests: Declarations Ethics approval and consent to participate The work outlined here was carried out as part of the PPI programme in the trial, and not as ethically approved research. As all contributors are authors no ethical approval was necessary. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: Diabetes and pregnancy studies have found better outcomes when interventions were developed with consumer (individuals with lived experience of diabetes) and community involvement. When consumers are central to development and delivery of interventions, study participants have better engagement and outcomes, particularly for individuals from culturally and linguistically diverse (CALD) and/or lower socio-economic backgrounds. Our study aims to examine the scope of consumer and community involvement (CCI) in the construction and implementation of pre-pregnancy care (PPC) interventions and discuss a framework for consumer-lead intervention development., Methods: A systematic literature review was conducted, examining 3 electronic databases. A meta synthesis analysis of tabulated data summarized in a literature matrix was undertaken with a phenomenological approach to develop a Pre-Pregnancy Care CCI-Driven Intervention Framework., Results: Overall, 4642 papers were identified, with 29 meeting inclusion criteria. The meta-synthesis and literature matrix identified several common themes across previous studies. These were: barriers to accessing (PPC) such as negativity and stigma in care from behaviours, attitudes and perceptions of HCPs; limited appointment availability not aligning with work and family commitments; fear of losing a "normal" pregnancy journey; awareness of risk but unwillingness to discuss if consumers have not established trust with HCPs; inaccessibility to CALD appropriate PPC and contraception; and digitisation of PPC information resources including peer support and social media. From these results, a PPC Consumer-Driven Intervention Framework for Women with Pregestational Diabetes was developed with recommendations., Conclusion: Consumers have been under-involved in the majority of previous developments and implementation of interventions for women with diabetes and pregnancy, and their representation as stakeholders in interventions is paramount to the longevity of intervention outcomes. To assist community involvement in diabetes pregnancy intervention design and delivery we created a new framework, for improving clinical and social outcomes in healthcare, empowering relationships between HCPs and consumers, and highlighting the value of lived experience and women-centred care for increased community engagement., Competing Interests: Declarations Ethics approval and consent to participate Not applicable. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Context: In fiscal year 2019, the Department of Health and Human Services (DHHS) received an appropriation from Congress specifically to update guidelines for investigating community cancer concerns. This resulted in the DHHS directing the Centers for Disease Control and Prevention (CDC) to fulfill this responsibility., Program: The CDC and the Agency for Toxic Substances and Disease Registry (ATSDR) provide guidance to state, tribal, local, and territorial (STLT) health departments and play important roles in supporting STLT programs in addressing community cancer concerns., Implementation: The updated guidelines offer enhancements addressing limitations and challenges regarding the process for investigating cancer clusters as expressed by STLT programs responsible for responding to inquiries and by communities impacted by unusual patterns of cancer. Additionally, the updated guidelines offer new tools and approaches associated with scientific advancements. Issues associated with improving communications and community engagement were a priority. Details in the updated guidelines provide suggestions for building and maintaining trust; provide resources via additional tools, templates, and methodology to facilitate sharing of information; provide suggestions for identifying agency and community points of contacts; and provide suggestions for establishing a community advisory committee., Conclusion: Enhancements to the previous guidelines were included to address advancements in statistical approaches and methods for understanding exposure pathways and also to respond to limitations described in the previous guidelines. Furthermore, these enhancements ensure communities have a voice in the process and offer methods to enhance transparency throughout the investigative process. Ultimately, the 2022 Guidelines are designed to ensure that community engagement, community input, and communication remains paramount to the process of assessing unusual patterns of cancer and environmental concerns., Competing Interests: The authors declare no conflicts of interest., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Palliative care is a crucial discipline that alleviates suffering and enhances the quality of life for patients with life-limiting illnesses and their families. However, there is gap globally between the need for and availability of these services. Integrated health service networks offer a promising solution to address this gap in rural areas, by coordinating care across different levels and sectors. This scoping review aimed at identifying the key characteristics of palliative care networks in rural communities. A broad search without time limits was conducted in four databases. Analysis and synthesis were conducted using Latent Dirichlet Allocation topic modeling. Sixteen studies were included, revealing four key themes regarding the development of palliative care networks in rural areas: community engagement is essential to secure the reach of rural networks, tailored approaches acknowledging diversity enrich these networks, team-centric efforts involving stakeholder coordination ensure successful implementation, and a multifaceted approach-empowering non-traditional stakeholders and incorporating technology resources into primary health services-dynamizes palliative care delivery in rural areas. These findings underscore the potential of collaborative and innovative approaches to enhance the accessibility and effectiveness of palliative care in underserved rural communities. Further cost-effectiveness studies are warranted to better understand the impact these strategies can have on health systems., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Author(s). Published by Elsevier B.V. All rights reserved.)

In this topical review, we integrate 3 concepts-public health practice, community engagement, and cross-sector governance-to consider the following question: What is the underlying relationship between public health and cross-sector governance according to which the field can understand the role of community engagement in achieving health equity? We begin with an overview of public health practice and the practice of community engagement. Next, we position these practices in the broader turn toward cross-sector governance. The integration of these themes reveals that common tools for community engagement fail to address questions about how services should be funded, how resources should be distributed, and which members of the community have a claim to services. We therefore suggest that distinguishing between community engagement for equity and equitable community engagement is a first step toward deepening dialogue about the role of public health in achieving health equity., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Nigeria accounts for a substantial cholera burden globally, particularly in its northeast region, where insurgency is persistent and widespread. We used participatory group model building workshops to explore enablers and barriers to implementing known cholera interventions, including water, sanitation and hygiene, surveillance and laboratory, case management, community engagement, oral cholera vaccine, and leadership and coordination, as well as exploring leverage points for interventions and collaboration. The study engaged key cholera stakeholders in the northeastern States of Adamawa and Bauchi, as well as national stakeholders in Abuja. Adamawa and Bauchi States' group modes building participants comprised 49 community members and 43 healthcare providers, while the 23 national participants comprised government ministry, department and agency staff, and development partners. Data were analysed thematically and validated via consultation with selected participants. The study identified four overarching themes regarding the enablers and barriers to implementing cholera interventions: (1) political will, (2) health system resources and structures, (3) community trust and culture, and (4) spill-over effect of COVID-19. Specifically, inadequate political will exerts its effect directly (e.g. limited funding for prepositioning essential cholera supplies) or indirectly (e.g. overlapping policies) on implementing cholera interventions. The healthcare system structure (e.g. centralization of cholera management in a State capital) and limited surveillance tools weaken the capacity to implement cholera interventions. Community trust emerges as integral to strengthening the healthcare system's resilience in mitigating the impacts of cholera outbreaks. Lastly, the spill-over effects of COVID-19 helped promote interventions similar to cholera (e.g. water, sanitation and hygiene) and directly enhanced political will. In conclusion, the study offers insights into the complex barriers and enablers to implementing cholera interventions in Nigeria's cholera-endemic settings. Strong political commitment, strengthening the healthcare system, building community trust and an effective public health system can enhance the implementation of cholera interventions in Nigeria., (© The Author(s) 2024. Published by Oxford University Press in association with The London School of Hygiene and Tropical Medicine.)

We present findings from the Our Voice in Barú project, examining adolescent engagement in citizen science to address environmental and social factors affecting well-being in a semi-rural Afro-descendant community in Latin America. The project aimed to identify barriers and enablers of well-being, informing adolescent-led actions for sustainable environmental changes relevant to adolescent health. Utilizing the Our Voice citizen science method, which involved technology-enabled walks, participatory cartography workshops and community meetings, we engaged adolescents and other community members. Complex systems framework was employed to analyze results and assess the promotion of collective action and local change. Local enablers of well-being included availability of quality sports and recreational venues as safe spaces, educational settings and cultural aspects, fostering safety, community pride, and personal growth. Conversely, barriers included environmental contamination, deteriorated sports venues and drug addiction, indicating the community's limited access to services and exposure to harmful substances. Adolescent citizen scientists, in partnership with the research team and relevant community decision-makers, successfully achieved changes aimed at identified barriers, including infrastructural enhancements like the repair of pumps to remove stagnant water, improvements in the quality and safety of recreational venues, and the implementation of community-led initiatives to address substance abuse and promote healthier behaviors. The Our Voice in Barú project empowered adolescents to advocate for change and promoted collective action to tackle barriers identified as significant to their well-being., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

Background: The volume of online health information available makes it difficult to navigate and check its validity and reliability. A community-based MedlinePlus training program was developed to improve participants' ability to access credible online health information., Case Presentation: The program was a public-private partnership between a managed care organization and four local public libraries. A total of eight programs were held between October and November 2017. Each program had a 30-minute cooking demonstration followed by a 30-minute training on access to and navigation of the MedlinePlus website. Program participants were Medicaid beneficiaries, dually eligible for Medicare and Medicaid beneficiaries, and community members from a Pennsylvania county (n=39). A pre-and post-training questionnaire was administered to assess participants' knowledge and practice, and their ability to access health information on the MedlinePlus website. We conducted a retrospective analysis of the data collected during the MedlinePlus trainings. Results from the Wilcoxon Signed Rank test indicated no statistically significant change in participants' ability to access information (Z= -1.41, p=0.16) after attending the program., Conclusion: Although the median pre- to post-program responses improved from 'incorrect' to 'correct,' the number of programs held, and low attendance might be the reason for non-significant results. Participants reported that the program was informative, the website was comprehensive and user-friendly, and they were impressed by the healthy and inexpensive meal preparation from discount store-bought food. Holding MedlinePlus training programs in conjunction with a cooking program and collaborating with local public libraries might be a promising format that needs additional research., (Copyright © 2024 Shamly Austin, Emily Hughes, Haiyan Qu.)

Introduction: There is a paucity of research on and a limited understanding of patient and public involvement (PPI) in the context of research in homelessness and, in particular, direct involvement of people with lived and living experience of homelessness (PEH) as expert advisors. We aim to report on outcomes and reflections from lived experience advisory panel (LEAP) meetings and PPI activities, held throughout the study lifecycle of a pilot randomised-controlled trial (RCT) focused on evaluating integrated health and practical support for PEH., Methods: Community Pharmacy Homeless Outreach Engagement Non-medical Independent prescribing Rx (PHOENIx Community Pharmacy RCT) is an integrated health and social care intervention for people experiencing homelessness who present to community pharmacy. Intervention includes weekly support from a pharmacist prescriber and a third sector support worker for up to 6 months. PPI activities undertaken throughout the study were documented, including outcomes of LEAP meetings. Outcome reporting followed Guidance for Reporting Involvement of Patients and the Public 2 Short Form (GRIPP2-SF)., Results: In total, 17 members were recruited into the LEAP; six meetings (three in two study sites) were held. PPI input was also received through representation from homelessness third sector organisation staff as study co-applicants and core membership in the trial steering committee. Together, the PPI activities helped shape the study proposal, design of study materials, data analysis and dissemination materials. LEAP panel members offered valuable input via their experience and expertise into the delivery and refinement of interventions. Although longitudinal input was received from some LEAP members, ensuring repeat attendance in the pre-planned meetings was challenging., Conclusion: People who face social exclusion and marginalisation can provide highly valuable input as equal partners in co-design and delivery of interventions seeking to improve their health and well-being. Fluid membership and flexible methods of seeking and incorporating advice can offer pragmatic approaches to minimising barriers to continued involvement in research., Patient or Public Contribution: This study reports findings and learning relevant to involvement of people with lived and living experience of homelessness as advisors in a research study. It is important for researchers to offer fluid memberships and use diverse methods to receive input from lived experience members, as traditional PPI methodology may be insufficient to ensure inclusivity. Staff and volunteers from third sector organisations were important PPI partners who bring their experience based on frontline service provision, often as the first port of call for people experiencing severe and multiple disadvantage., Trial Registration: ISRCTN88146807., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Importance: Interventions are needed to support the long-term needs of stroke survivors when they transition from inpatient rehabilitation to home, where they face new home and community environmental barriers., Objective: To compare the efficacy of a novel, enhanced rehabilitation transition program with attentional control to improve community participation and activity of daily living (ADL) performance and to reduce environmental barriers in the home and community after stroke., Design, Setting, and Participants: This phase 2b, parallel randomized clinical trial assessed patients 50 years or older who had experienced an acute ischemic stroke or intracerebral hemorrhage, were independent in ADLs before stroke, and planned to be discharged home. Patients were assessed at an inpatient rehabilitation facility in St Louis, Missouri, and their homes from January 9, 2018, to December 20, 2023., Intervention: Community Participation Transition after Stroke (COMPASS), including home modifications and strategy training., Main Outcomes and Measures: The primary outcome was community participation (Reintegration to Normal Living Index). Secondary outcomes were daily activity performance (Stroke Impact Scale ADL domain and the In-Home Occupational Performance Evaluation [I-HOPE] activity, performance, and satisfaction scores) and environmental barriers in the home (I-HOPE environmental barriers score)., Results: A total of 185 participants (mean [SD] age, 66.3 [9.0] years; 105 [56.8%] male) were randomized (85 to the COMPASS group and 100 to the control group). The COMPASS and control participants experienced similar improvements in community participation by 12 months, with no significant group (mean difference, 0.3; 95% CI, -4.6 to 5.2; P = .91) or group × time interaction (between-group differences in changes over time, 1.3; 95% CI, -7.1 to 9.6; P = .76) effects. Improvements in I-HOPE performance and satisfaction scores were greater for COMPASS participants than control participants at 12 months (between-group differences in changes for performance: 0.39; 95% CI, 0.01-0.77; P = .046; satisfaction: 0.52; 95% CI, 0.08-0.96; P = .02). The COMPASS participants had greater improvements for I-HOPE environmental barriers than the control participants (P = .003 for interaction), with the largest differences at 6 months (between-group differences in changes: -15.3; 95% CI -24.4 to -6.2)., Conclusions and Relevance: In this randomized clinical trial of stroke survivors, participants in both groups experienced improvements in community participation. COMPASS participants had greater improvements in self-rated performance and satisfaction with performing daily activities as well as a greater reduction in environmental barriers than control participants. COMPASS reduced environmental barriers and improved performance of daily activities for stroke survivors as they transitioned from inpatient rehabilitation to home., Trial Registration: ClinicalTrials.gov Identifier: NCT03485820.

Introduction: Calls for a 'major rethinking' of the delivery of healthcare services are echoed across Canada as the healthcare crisis continues. Proposed strategies to address the challenges of this crisis include: a transdisciplinary approach that is patient-focused and community-based; a representative team composed of patients, caregivers, healthcare providers, decision makers and policymakers; and authentic collaboration among stakeholder groups throughout the research cycle., Objective: This study aimed to enable community members to take on a leading role in building capacity and to provide a space for discourse among diverse groups while respecting community wisdom, values and priorities., Methods: The Collaborative Health Research Institute of Southern Alberta (CHRISA) organized a participant-oriented Unconference event to address the factors contributing to the healthcare crisis in Alberta, Canada. An Unconference is a participant-oriented meeting where the attendees nominate the topics, agree on the agenda and lead the sessions. This article describes the Unconference programme and presents the findings from a thematic analysis of the discussion notes from breakout sessions, feedback from participants (i.e., lessons learned) and pragmatic recommendations for future Unconference events., Results: Findings from sessions included the following: (1) identifying the 'wicked' problems, (2) the factors/causes contributing to each problem (i.e., contributors) and (3) potential multifaceted solutions or ideas to remedy the problem. Lessons learned from the postevent evaluation resulted in six recommendations for organizing future Unconferences., Conclusion: The CHRISA Unconference achieved its goals by providing a venue for attendees to connect, engage and network on topics of interest, explore new ways of addressing challenges in healthcare and serve as a foundation for future initiatives and collaborations in healthcare research and practice., Patient or Public Contribution: The Unconference was attended by community members who identify as patients, frontline workers, programme administrators and representatives of public organizations and agencies. Participants contributed to breakout session discussions, provided feedback on the Unconference and offered recommendations for future events. The co-authors are service users, people with lived experience or those work in the healthcare setting; they have been involved in data collection, analysis and interpretation, and contributed to this report., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Objectives. To describe how an innovative, community-engaged survey illuminated previously unmeasured pandemic inequities and informed health equity investments. Methods. The methodological approach of Massachusetts' COVID-19 Community Impact Survey, a cross-sectional online survey, was driven by key health equity principles: prioritizing community engagement, gathering granular and intersectional data, capturing root causes, elevating community voices, expediting analysis for timeliness, and creating data-to-action pathways. Data collection was deployed statewide in 11 languages from 2020 to 2021. Results. The embedded equity principles resulted in a rich data set and enabled analyses of populations previously undescribed. The final sample included 33 800 respondents including unprecedented numbers of populations underrepresented in traditional data sources. Analyses indicated that pandemic impacts related to basic needs, discrimination, health care access, workplace protections, employment, and mental health disproportionately affected these priority populations, which included Asian American/Pacific Islanders and parents. Conclusions. Equity-centered data approaches allow for analyses of populations previously invisible in surveillance data, enable more equitable public health action, and are both possible and necessary to deploy in state health departments. ( Am J Public Health . 2024;114(S7):S599-S609. https://doi.org/10.2105/AJPH.2024.307800).

Issue Addressed: Despite increasing interest in citizen science as an approach to engage members of the public in research and decision making about health and wellbeing, there is a lack of practical evidence to guide policy and practice organisations to utilise these approaches. In this study we investigated how and why citizen science came to be incorporated into the work of two policy organisations., Methods: We offer two in-depth case studies of Australian government organisations which have utilised citizen science in environmental and healthy ageing policy. Interviews with organisational informants and relevant documents were analysed inductively to explore how citizen science came to be adopted, legitimised and supported., Results: Citizen science was utilised to address multiple organisational objectives, including increasing community participation in science; enhancing individuals' wellbeing, learning, and skills, and generating data to support research and policy in a relatively cost-effective manner. In both cases, grant funding was a mechanism to support citizen science, with project delivery facilitated through academic-policy partnerships and led by external academic or community partners., Conclusion: Although citizen science is relatively new in policy and practice settings, this study underscores the value of these approaches in realising co-benefits for organisations, academics, and community members. The support and advocacy of senior managers as 'champions', and a willingness to invest in trialling new approaches to address policy problems are necessary ingredients to foster acceptance and legitimacy of citizen science. SO WHAT?: Citizen science initiatives can be strategically utilised by health promotion organisations to enact priorities related to genuine community involvement, support research and innovation and facilitate collaboration and partnerships between academic, policy and community stakeholders., (© 2024 The Authors. Health Promotion Journal of Australia published by John Wiley & Sons Australia, Ltd on behalf of Australian Health Promotion Association.)

Objectives: To provide an overview of patient and public involvement (PPI) in the mesolevel and macrolevel of healthcare (different from PPI in research) and identify directions for future research by mapping contexts, terminology, conceptual frameworks, measured outcomes and research gaps., Design: Mapping review of systematic reviews. A patient coresearcher (JB) was involved in all stages. A broad search strategy was applied to capture the variation in terminology., Data Sources: MEDLINE, CINAHL and PsycINFO were searched from 1 January 2001 to 5 December 2022., Eligibility Criteria: We included systematic reviews of empirical studies focusing on PPI in the mesolevel and macrolevel of healthcare., Data Extraction and Synthesis: Three independent reviewers used standardised methods to screen studies and extract data. Thematic categories were created inductively through iteration. The results were organised in narrative, visual or tabular formats., Results: 4419 identified records were screened. 37 systematic reviews were eligible for inclusion. Most studies were narrative syntheses (N=26). Identified context categories were PPI for healthcare quality improvement (22%), patient safety (8%), community-based initiatives (27%), peer support (16 %) and education of healthcare professionals (27%). A wide range of terms was used to discuss PPI, with community participation being the most common. 28 reviews reported on frameworks, conceptual guidance and/or policy documents. Nine different types of outcomes were identified. The research gap pointed out most frequently is the lack of studies of robust designs that allow for replication and long-term follow-up, followed by studies on cost-effectiveness and resources needed. There is a need for consensus on the use of terminology., Conclusions: This mapping review sheds light on the evolving landscape of PPI in healthcare. To advance the field, future research should prioritise rigorous study designs, cost-effectiveness assessments and consensus-building efforts to create a more unified and impactful approach for PPI in healthcare., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Introduction: For the general public, e-participation represents a potential solution to the challenges associated with in-person participation in health policy-making processes. By fostering democratic engagement, e-participation can enhance civic legitimacy and trust in public institutions. However, despite its importance, there is currently a gap in the literature regarding a comprehensive synthesis of studies on various aspects of e-participation in the health policy domain. These aspects include levels of participation, underlying mechanisms, barriers, facilitators, values and outcomes. To address this gap, our proposed scoping review aims to systematically investigate and classify the available literature related to e-participation in policy-making for health., Methods and Analysis: We will employ the Population, Concept and Context framework developed by Arksey and O'Malley (2005). Our population of interest will consist of participants involved in policy-making for health, including both government organisers of e-participation and participating citizens (the governed). To identify relevant studies, we will systematically search databases such as CINAHL (EBSCO), Academic Search Premier (EBSCO), Social Services Abstracts (ProQuest), Scopus (Elsevier), EMBASE (Elsevier), The Cochrane Database of Systematic Reviews, Campbell Collaboration, JBI Evidence Synthesis and PubMed using a predefined search strategy. Two independent reviewers will conduct a three-tiered screening process for identified articles, with a third reviewer resolving any discrepancies. Data extraction will follow a predefined yet flexible form. The results will be summarised in a narrative format, presented either in tabular or diagrammatic form., Ethics and Dissemination: The National Institute of Health Research of the Islamic Republic of Iran's ethics committee has approved this review study. Our findings will be disseminated through peer-reviewed publications, conference presentations and targeted knowledge-sharing sessions with relevant stakeholders., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: There has been a growing push to involve patients in clinical research, shifting from conducting research on, about, or for them to conducting it with them. Two arguments advocate for this approach, known as Patient and Public Involvement (PPI): to improve research quality, appropriateness, relevance, and credibility by including patients' diverse perspectives, and to use PPI to empower patients and democratize research for more equity in research and healthcare. However, while empowerment is a core objective, it is often not clear what is meant by empowerment in the context of PPI in clinical research. This vacancy can lead to insecurities for both patients and researchers and a disconnect between the rhetoric of empowerment in PPI and the reality of its practice in clinical trials. Thus, clarifying the understanding of empowerment within PPI in clinical research is essential to ensure that involvement does not become tokenistic and depletes patients' capacity to advocate for their rights and needs., Methods: We explored the historical roots of empowerment, primarily emerging from mid-20th century social movements like feminism and civil rights and reflected the conceptual roots of empowerment from diverse fields to better understand the (potential) role of empowerment in PPI in clinical research including its possibilities and limitations., Results: Common themes of empowerment in PPI and other fields are participation, challenging power structures, valuing diverse perspectives, and promoting collaboration. On the other hand, themes such as contextual differences in the empowerment objectives, the relationship between empowerment and scientific demands, research expertise, and power asymmetries mark a clear distinction from empowerment in other fields., Conclusion: PPI offers potential for patient empowerment in clinical trials, even when its primary goal may be research quality. Elements like participation, sharing opinions, and active engagement can contribute to patient empowerment. Nonetheless, some expectations tied to empowerment might not be met within the constraints of clinical research. To empower patients, stakeholders must be explicit about what empowerment means in their research, engage in transparent communication about its realistic scope, and continuously reflect on how empowerment can be fostered and sustained within the research process., (© 2024. The Author(s).)

Purpose: The purpose of this research was to cocreate with patients and the public a set of evidence-informed guiding principles for their authentic, responsive, ongoing, and sustainable engagement in the mission, goals, curriculum, and delivery of medical education., Method: A set of guiding principles of relevance to medical education was identified from the literature. Eight focus groups with patients and community members representing a wide variety of perspectives were conducted in April and May 2022. Participants reviewed, prioritized, and discussed the principles and described successful engagement, resulting in 8 guiding principles in priority order. A summary report was circulated to participants for feedback. The principles were reviewed and endorsed by senior leaders in the medical school., Results: The 8 focus groups were attended by 38 people (age range, mid-20s to postretirement; 7 male, 27 female, and 4 unknown gender). Accountability (19%), inclusion (18%), reciprocity (17%), and partnership and shared decision-making (14%) were chosen as the most important principles. Participants want evidence that their contributions are valued and have made a difference. They want the medical school to include and support a diversity of perspectives that reflect the populations being served by the health care system. They want the medical school to invest in building trusting and respectful long-term relationships with patients and the public., Conclusions: The guiding principles could be used by medical schools as a starting point to build relationships with their local communities to increase the authentic and sustainable engagement of patients and the public in the educational mission of the medical school., (Copyright © 2024 the Association of American Medical Colleges.)

Background: Communities in which adolescent pregnancy and safe abortion care are taboo may benefit from culturally appropriate information, education, and communication., Objective: This ethnographic and participatory action research (PAR) elicited community members' perceptions to adolescent pregnancy: which then informed dialogue-drama development in Burmese and Karen language for undocumented migrants on the Thailand-Myanmar border., Methods: PAR was conducted in Karen and Burmese language. Interviews and discussions elicited perceptions of community members about adolescent pregnancy. These were analysed for themes and using the fishbone technique, to determine the objectives for the drama. After developing the structure and content of the drama it was piloted, revised, and performed in communities. Responses and impact of the drama were recorded. The team reflected on the drama as a method for health messaging., Results: In 2022, themes of responsibility, communication, and experiences of adolescent pregnancy emerged from 10 interviews and 6 discussions with community members. The fishbone technique established three dramatic objectives, woven into a teenage love story with an unplanned pregnancy, to raise community awareness of i) adolescent pregnancy, ii) contraception, and iii) choice in unexpected pregnancy. Post-drama feedback from 11 migrant communities (1,238 participants) was positive although some community members voiced concerns. Given the logistical challenges of conducting the drama in person, a film will be created for wider dissemination., Conclusions: Participatory action research resulted in a culturally-nuanced performance, with communities requesting further performances and awareness on adolescent pregnancy and safe abortion care. Video is likely to be a more sustainable option.

Dengue fever, a mosquito-borne viral illness transmitted by Aedes mosquitoes, continues to be a significant public health burden in tropical and subtropical regions. Traditional vector control methods, primarily reliant on insecticides and larvicides, face challenges because of emerging insecticide resistance and limited community engagement. This narrative review explores co-creation as a collaborative approach to dengue control, where communities actively participate in designing and implementing solutions. Through an examination of existing literature, we discuss the rationale for co-creation, the various methods employed, evidence for effectiveness, challenges, and other items. Findings from previous studies suggest that co-creation can empower communities by fostering a sense of ownership and responsibility for dengue control efforts. Using local knowledge and insights, co-creation approaches have also been shown to identify and address specific community needs and preferences, leading to more contextually relevant interventions. Additionally, co-creation initiatives have demonstrated success in promoting behavior change within communities, leading to increased uptakes of preventive measures such as proper waste management and use of personal protective measures. However, challenges such as building trust and collaboration, addressing power dynamics, and ensuring long-term sustainability remain critical factors that are essential to foster collaboration, empower communities, and develop sustainable strategies for dengue control in affected regions.

Background: Community engagement is recognized as a vital component of health-related research and programs, particularly during infectious disease outbreaks and epidemics. Despite the importance of engaging communities in the response to COVID-19, relatively little research has examined how this was (or was not) achieved, and even less in low- and middle-income countries. This article describes the community engagement that accompanied efforts to strengthen COVID-19 diagnosis and treatment as part of the ECO Project in Cochabamba, Bolivia and highlights lessons for future pandemic response., Methods: Community engagement involved formative assessment, co-creation to develop a health information campaign, ongoing community listening and evaluation. Qualitative data were collected during workshops, project meetings and focus groups. Questionnaire-based surveys were conducted to assess COVID-19-related attitudes, knowledge and practices., Results: The collected data highlighted the value of working closely with well-established community health committees and involving community members with social media skills in the design of COVID-19-related messages to address on- and offline misinformation. Co-creation sessions enabled the adjustment of the information campaign in terms of content and approach based on the needs and preferences of community members and health staff. The continuous listening with community and health personnel facilitated the ongoing adaptation of project activities., Conclusion: Through a stepped and multi-pronged approach, incorporating co-creation and community listening, the engagement could respond to emerging local challenges during the pandemic. The project created spaces for dialogue and opportunities for collaboration that strengthened links between the community and the health services.

Introduction: Medication-related problems remain a significant burden despite the availability of various interventions and services in primary care. Involving health care consumers to design interventions or services across health disciplines is becoming more widely used as this type of engagement reportedly leads to more accessible, acceptable and sustainable health services and quality of life. We conducted a scoping review to examine when and how consumers have been involved in the design and development of medication safety interventions or services within the primary care., Methods: We searched five key databases (MEDLINE (EBSCOhost), CINAHL (EBSCOhost), PsycINFO (EBSCOhost), Embase (Elsevier) and Cochrane Library (Wiley)) for relevant articles published up to February 2024. Studies were included if they involved adult consumers (≥ 18 years), their families, carers or the wider community as stakeholders. This review only included studies where the aim was to improve safe and effective medication use, delivered exclusively in primary care. To examine consumer involvement approaches and methods we adapted a framework describing the stages of consumer involvement for the data extraction tool., Results: Overall, 15 studies were included (comprising 24 articles). Codesign, experience-based codesign, coproduction and participatory action research were commonly used approaches. Meetings, interviews, surveys/questionnaires were commonly used methods. Two studies reported consumer involvement across all stages of the research study, and only one study described the consumer experience of being involved in the research process. The impact of consumer involvement on the effectiveness of these services or interventions was mixed., Conclusion: The potential benefits of consumer involvement in the design and development of medication safety interventions or services may not have been fully maximised, given that genuine consumer involvement across all stages of the research study appears uncommon. More transparent and consistent reporting around the description of consumers involved, their experience of being involved and overall impact and quality of consumer participation is needed., Patient or Public Contribution: This scoping review was undertaken without consumers, patients, service users, caregivers or people with lived experience or members of the public due to resource limitations. This scoping review was undertaken and written by academics, who have undertaken codesign with consumers and stakeholders and also have personal lived experience of medication-related problems., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Introduction: Partnering with Consumers in healthcare systems is now widely accepted and mandated in many countries. Despite this acceptance, there is minimal information regarding the best practice of how to successfully establish systems to embed this practice into healthcare systems., Methods: This evaluation used the RE-AIM implementation framework to retrospectively analyse data from a 3-year timeline to review the events relating to the transition of Consumer Partnering into a Clinical Governance Unit. Data was sourced via Phase 1 - a focus group to establish a 3-year timeline of events, enablers and barriers, and Phase 2 - a quantitative and qualitative semi-structured interview to review systems that had been developed to support embedding partnering with consumers into Clinical Governance., Results: Five primary enablers and five barriers to successfully embedding a Consumer Partnering Team into a Clinical Governance Unit were identified. Enablers included Executive sponsorship and ownership of the value of partnering with consumers, Executive leadership influence on local area uptake, an organization-wide network, valuing via remuneration, and a centralized orientation and onboarding programme for Consumer Partners. Barriers included skills and attitudes of committee chairs, the size of the Directorate (smaller local areas can be easier to influence change), patient feedback data requires interpretation to be useful, staff turnover can reduce the relationships with Consumer Partners, and financial insecurity is a barrier to implementation and maintenance., Conclusions: This article described how an Australian Health Service embedded a Consumer Partnering Team into a Clinical Governance Unit to ensure that partnering became business as usual practice. Enablers, barriers, and unintended consequences can be used as learnings for other organizations to develop a similar approach., Patient or Public Contribution: Two Consumer Partners with lived experience of the health service, and members of the organizations committee structures are part of the evaluation team. As team members, the consumers participated as equal contributors in evaluation design, analysis of the focus group and interview data, and contribution to the writing and review of the manuscript. Two Consumer Partners with lived experience of the health service, and members of the committee structures participated in the focus groups and the interviews., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Introduction: Microgrants for health promotion have the potential to engage communities in designing and implementing place-based interventions to improve health and social outcomes. However, the evidence base around microgrants for health promotion is limited. This study presents the evaluation of a health service-funded microgrant program for health promotion in rural Australia., Methods: The evaluation framework was developed through a participatory approach and involved collaborative logic model building and co-prioritized evaluation questions with health service staff and grant recipients. Evaluation questions focused on participation, short-term outcomes, and the perceived value of program activities. Qualitative methods (reflexive thematic analysis) were used to answer the evaluation questions. Data sources included semi-structured interviews with grantees (n = 11) and the health service's health promotion team (n = 4), electronic field notes kept by the health promotion team (n = 50 documents), electronic progress reports completed by grantees (n = 6) and information and feedback forums (n = 2)., Results: Since the program's inception in 2019, the health service has received 22 grant applications of which 15 were approved and 14 disbursed. Evaluation results show that grantees were community members with multiple roles, often with previous experience in applying for grants. Expected outcomes have been partially met, especially with regard to the program's aim of community empowerment. The most notable impact was the enhancement of participants' perception of and relationship with the health promotion team, as well as the creation of opportunities for community members such as exposure to art and bridging of social groups., Conclusion: Microgrants represent a feasible way to increase health opportunities and foster community participation in the planning and delivery of health promotion programs. The key program activities identified and suggested improvements can help guide program replication and adaptation by other small organizations., Public Contribution: Community members who had previously received a health service grant were invited to participate in collaborative workshops and follow-up surveys to codesign the grant program evaluation framework, co-prioritize evaluation questions and guide the results' dissemination plan., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Data-informed decision making is a critical goal for many community-based public health research initiatives. However, community partners often encounter challenges when interacting with data. The Community-Engaged Data Science (CEDS) model offers a goal-oriented, iterative guide for communities to collaborate with research data scientists through data ambassadors. This study presents a case study of CEDS applied to research on the opioid epidemic in 18 counties in Ohio as part of the HEALing Communities Study (HCS). Data ambassadors provided a pivotal role in empowering community coalitions to translate data into action using key steps of CEDS which included: data landscapes identifying available data in the community; data action plans from logic models based on community data needs and gaps of data; data collection/sharing agreements; and data systems including portals and dashboards. Throughout the CEDS process, data ambassadors emphasized sustainable data workflows, supporting continued data engagement beyond the HCS. The implementation of CEDS in Ohio underscored the importance of relationship building, timing of implementation, understanding communities' data preferences, and flexibility when working with communities. Researchers should consider implementing CEDS and integrating a data ambassador in community-based research to enhance community data engagement and drive data-informed interventions to improve public health outcomes., (© 2024. The Author(s).)

Introduction: Emergency clinical research has played an important role in improving outcomes for acutely ill patients. This is due in part to regulatory measures that allow Exception From Informed Consent (EFIC) trials. The Food and Drug Administration (FDA) requires sponsor-investigators to engage in community consultation and public disclosure activities prior to initiating an Exception From Informed Consent trial. Various approaches to community consultation and public disclosure have been described and adapted to local contexts and Institutional Review Board (IRB) interpretations. The COVID-19 pandemic has precluded the ability to engage local communities through direct, in-person public venues, requiring research teams to find alternative ways to inform communities about emergency research., Methods: The PreVent and PreVent 2 studies were two Exception From Informed Consent trials of emergency endotracheal intubation, conducted in one geographic location for the PreVent Study and in two geographic locations for the PreVent 2 Study. During the period of the two studies, there was a substantial shift in the methodological approach spanning across the periods before and after the pandemic from telephone, to in-person, to virtual settings., Results: During the 10 years of implementation of Exception From Informed Consent activities for the two PreVent trials, there was overall favorable public support for the concept of Exception From Informed Consent trials and for the importance of emergency clinical research. Community concerns were few and also did not differ much by method of contact. Attendance was higher with the implementation of virtual technology to reach members of the community, and overall feedback was more positive compared with telephone contacts or in-person events. However, the proportion of survey responses received after completion of the remote, live event was substantially lower, with a greater proportion of respondents having higher education levels. This suggests less active engagement after completion of the synchronous activity and potentially higher selection bias among respondents. Importantly, we found that engagement with local community leaders was a key component to develop appropriate plans to connect with the public., Conclusion: The PreVent experience illustrated operational advantages and disadvantages to community consultation conducted primarily by telephone, in-person events, or online activities. Approaches to enhance community acceptance included partnering with community leaders to optimize the communication strategies and trust building with the involvement of Institutional Review Board representatives during community meetings. Researchers might need to pivot from in-person planning to virtual techniques while maintaining the ability to engage with the public with two-way communication approaches. Due to less active engagement, and potential for selection bias in the responders, further research is needed to address the costs and benefits of virtual community consultation and public disclosure activities compared to in-person events., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Community-based coalitions are a common strategy for community engagement efforts targeting the improvement of a variety of population health outcomes. The typical processes that coalitions follow to organize efforts include steps that are sequential, slow, and time intensive. These processes also limit local decision-making to the selection of evidence-based policies or programs., Methods: We present a process control theory-based Community Action Process, Investigate-Design-Practice-Reflect (IDPR), where community hubs (i.e., coalitions) organize agile efforts in a non-sequential, rapid, and efficient manner to harness local assets and data to make decisions regarding the provision and production of population health services. Using qualitative methods, we illustrate and analyze the use of IDPR in a one community case study as part of Wellscapes, a Type 3-hybrid implementation-effectiveness community randomized controlled trial to improve children's population health physical activity., Results: We found community members followed the IDPR Community Action Process to rapidly design, organize, deliver, and receive feedback on a community-based, children's population physical activity prototype, an afterschool Play-in-the-Park opportunity for all children., Discussion: Following IDPR afforded the community coalition timely learning through feedback within a process that coordinated decisions regarding what community services met community needs (provision decisions) and how to organize the production of the population health services (production decisions)., (© 2024. The Author(s).)

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., Competing Interests: The authors have declared that no competing interests exist., (Copyright: © 2024 Späth, Schmidt. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.)

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., Competing Interests: Declaration of competing interest We declare that no conflict of interest – financial or otherwise – exists. Please note that the authors alone are responsible for the views expressed in this article and they do not necessarily represent the views, decisions or policies of the institutions with which they are affiliated., (Copyright © 2024. Published by Elsevier Ltd.)

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., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

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., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Objectives: Maternal mortality and morbidity disproportionately affect birthing people from racialized populations. Unfortunately, researchers can often compound these poor outcomes through a lack of authentic community engagement in research beyond the role of the research subject, leading to ineffective strategies for improving care and increasing equity. This article details the real-life strategies utilized to develop a community-engaged research project of a phased federally funded grant employing community engagement principles of co-leadership and co-creation. It also includes reflections from the researchers and advisory board on promising practices and lessons learned for equitably engaging patients and community partners in research., Methods: This article details the application of principles of community-engaged research in a federally funded phased research project focused on understanding disparities in maternal sepsis to develop better clinical and community interventions. Specifically, it discusses early steps in the research partnership to create a sustainable partnership with a Community Leadership Board guided by the principles of transparency, respect, compensation, and increasing research justice., Results: Based on the authors' experience, recommendations are provided for funders, researchers, and institutions to improve the quality and outcomes of communityengaged research. This work adds to community-based participatory and community-engaged research literature by providing concrete and practical steps for equitably engaging in research partnerships with a variety of collaborators., Conclusions: In conclusion, integrated patient and community co-leadership enhances research by providing insight, access to communities for education and dissemination of information, and identifying critical areas needing change. This report may help others address fundamental principles in this journey., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Introduction: As the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy-making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy-making for older adults., Methods: A systematic search of peer-reviewed and grey literature (English only) describing public engagement initiatives in health policy-making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts., Results: This review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy-making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation-type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives., Conclusion: This review describes how public engagement practices have been conducted to help inform health policy-making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector., Patient or Public Contribution: Older adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

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., (© The Author(s) 2024. Published by Oxford University Press. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)

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., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background: School Resource Officer (SRO) programs do not reduce school violence and increase school discipline. We describe the use of a culturally responsive framework to form a school community collaborative among students, parents, staff, administrators, and law enforcement to reform an SRO program, promote school safety, and reduce punitive measures., Methods: Members of a participating school district, a local county, and a university collaborated. Adapting an identified culturally responsive model, a racially/ethnically diverse school community co-developed and implemented a School Community Collaborative (SCC) to address a school safety priority (SRO program reform). The main outcomes were SCC model development and implementation, policy change, and school community feedback., Results: Sixteen community members participated in the 5-week SCC with students, staff, law enforcement, and parents. The SCC revised the district's SRO memorandum of understanding (MOU) with law enforcement. Participants reported favorable feedback, and 89% reported the inclusion of diverse voices., Conclusions: Co-development and implementation of an SCC process with schools were feasible. School SCC participated in a community-engaged evaluation and revision of an MOU., (© 2024, American School Health Association.)

Community engagement in research improves uptake of health interventions and health outcomes among marginalized populations. Researchers from school-based health centers serving marginalized communities in Miami, Florida fostered community engagement in COVID-19 research and health education through collaboration with school staff and student "champions" from June 2021 to June 2023. Evaluations completed by champions assessed acceptability, feasibility, and recommendations for improvements. Overall satisfaction was high among champions. We elaborate on lessons learned and future directions for this type of research collaboration. ( Am J Public Health . 2024;114(8):789-793. https://doi.org/10.2105/AJPH.2024.307711).

Background: Public involvement enhances the relevance, quality, and impact of research. There is some evidence that public involvement in Australian research lags other countries, such as the United Kingdom. The purpose of the systematic review was to establish the rates and describe the characteristics of public involvement in Australian clinical trials., Methods: We reviewed evidence of public involvement in all Australian randomised controlled trials published in the first 6 months of 2021. To determine the quality of public involvement, we used the five-item short-form version of the Guidance of Reporting Involvement Patients and the Public, version 2., Results: In total, 325 randomised controlled trials were included, of which 17 (5%) reported any public involvement. Six trials reported public involvement in setting the research aim and seven in developing study methods. The authors of one study reflected on the overall role and influence of public involvement in the research., Conclusion: Rate of public involvement in Australian clinical trials is seemingly substantially lower than those reported in countries with similar advanced public health care systems, notably the United Kingdom. Our observations may be explained by a lack of researcher skills in how to involve the public and the failure by major funding agencies in Australia to mandate public involvement when deciding on how to award grant funding., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Patient and public involvement and engagement (PPIE) is essential for improved research outcomes and reduced research waste. To be effective, PPIE should provide opportunities for diverse groups to contribute to all research stages. However, UK ethnic minority communities remain underrepresented in research. This article describes strategies adopted in a public health research project that were effective in building trust and increasing inclusion of ethnic minority communities. The study team of researchers and PPIE partners reflects lessons learnt during the project and describe six main strategies that built meaningful levels of trust and inclusion: 1) early start to recruitment of PPIE partners; 2) relationship-focused engagement; 3) co-production and consultation activities; 4) open communication and iterative feedback; 5) co-production of project closure activities, and; 6) diverse research team. Meaningful outcomes for the community included the involvement of people from ethnic minorities as research participants and PPIE partners, community wellbeing, co-production of public health recommendations co-presented at the UK Houses of Parliament, and consortium-wide impact evidenced by the enrolment of 51 active PPIE partners. PPIE partners reflect on their research involvement, offering advice to researchers and encouraging people from ethnic minority communities to take part in research. An important message from PPIE partners is that involvement should not be restricted to projects specific to ethnic minorities but become a routine part of general population research, recognising ethnic minorities as an integral part of UK society. In conclusion, this article demonstrates that with appropriate strategies, inclusion and diversity can be achieved in public health research. We recommend researchers, practitioners and policy makers adopt these strategies when planning their public health projects., (Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

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., (© 2024 The Author(s). Health Expectations published by John Wiley & Sons Ltd.)

Background and Objective: Consumer engagement improves research quality and relevance but can be difficult to implement. This study aimed to explore the motivations and understand the barriers, if any, experienced by consumers before and when partnering with cancer research teams., Methods: Semi-structured interviews were conducted with consumers and the results analysed thematically. Two groups were recruited: consumers who were members of the consumer registry and patients who did not have previous experience of being a consumer in a researcher partnership., Results: Twenty-one interviews were conducted with a total of 22 participants aged between 26 and 74 years. Consumers motivation was driven by altruism to help others and personal benefits. Barriers to beginning and maintaining consumer engagement included consumers' perceptions of being appreciated by researchers and meaningful communication between researchers and consumers., Conclusions: Australian policy has made important steps towards consumer engagement in research. This study showed that demonstrating an appreciation for consumers and effective communication are key areas to consider when designing implementation strategies of these policies in the cancer research space in the future., (© 2024. The Author(s).)

During public health emergencies, the work of prevention and control must be normalised, and coordination between economic development and epidemic prevention is crucial. However, in China, there is a lack of research on participatory governance in public health emergencies, particularly from a legal perspective. Existing studies are insufficient in terms of using legal texts and exploring legal governance in a normative sense, and there is an inadequate in-depth exploration of issues such as the legitimacy, path, motivation, and other aspects of participation. This article addresses these gaps by analysing the issues of participatory governance in public health emergencies from a legal perspective, using practical cases as examples. The research has shown that there are significant differences among the three types of organisations regarding their internal motivation, external incentives, and legal basis, and therefore it is necessary to distinguish different participation paths. Finally, we propose several measures to promote the active and sustained participation of organisation in governance, including cultivating the ability of organisations, emphasising organizational demands, seeking consensus, strengthening the guiding role of legislation, and broadening the channels of engagement., (© 2024 John Wiley & Sons Ltd.)

Issue Addressed: Community participation in planning, delivery, and evaluation of health promotion (HP) programs is a poorly explored topic. However, this approach has the potential to improve health outcomes and reduce health inequities, particularly for residents of rural and remote areas., Methods: This case study describes the outputs of an academic-health service partnership in rural Victoria. The collaboration has led to the implementation and ongoing evaluation of a microgrant program for HP which integrates community participation principles in the foundations of the program and its evaluation., Results: To date, 10 funded projects have been brought to completion, with COVID-19 having disturbed both grant distribution and funded activity implementation. Semi-structured interviews with health service officers served to clarify conceptualisation and operationalization of HP principles. Focus groups with health service management and officers contributed to building an overarching evaluation framework for the HP team's activities. Finally, the specific methodological evaluation framework for the microgrant program was developed through a collaborative workshop with the HP team and grantees., Conclusions: Fostering community participation in HP planning, delivery, and evaluation, especially in rural areas, is feasible as evidenced by the experience described in this case study. The forthcoming evaluation results will help clarify the impact of community participation on health-related outcomes. SO WHAT?: Documentation and dissemination of processes used to increase community participation in HP programs is essential to grow the knowledge base around what works and what doesn't, and for whom., (© 2023 The Authors. Health Promotion Journal of Australia published by John Wiley & Sons Australia, Ltd on behalf of Australian Health Promotion Association.)

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., (© 2024 The Author(s). Journal of the International AIDS Society published by John Wiley & Sons Ltd on behalf of International AIDS Society.)

The outbreak of COVID-19 created a global health crisis that has impacted our everyday lives. Risk communication and community engagement (RCCE) is one of the strategic pillars the World Health Organization (WHO) recommends when dealing with public health emergencies like COVID-19. In Malawi, the COVID-19 RCCE response was coordinated by the country's Ministry of Health and involved various organizations that distributed COVID-19 risk communication materials and engaged communities on important infection preventive practices. Furthermore, the Ministry of Information was involved in ensuring the messages were put across at national and subnational levels. Despite the efforts, most Malawians were reluctant to embrace set public health measures for COVID-19. Guided by a phenomenological approach, we used in-depth interviews with senior officials from 10 organizations, including the Ministry of Health, who were involved in RCCE response in Malawi, to understand the challenges that were faced in the implementation of RCCE activities in Malawi. We also reviewed project reports from three organizations, taken from the same implementing local organizations, to understand the experiences of implementing RCCE strategies in Malawi. We established that misconceptions, poor coordination, lack of political will, low-risk perceptions, and social norms undermined the response in Malawi. The results underscore the need for the authorities in Malawi to invest more in RCCE and strengthen the capacity to handle future epidemics. There is also a need to develop a national RCCE strategy with guidelines and protocols on methods of coordination, flow of communication, responsible ministry, tools for handling dis/misinformation and myths, and community engagement.

The Manawatū Food Action Network (MFAN) is a collective of social service and environmental organizations and community stakeholders that work together to promote collaboration, education and awareness of issues surrounding food security, food resilience, and localization in the local community. In 2021, the 4412 neighborhood was identified as requiring urgent assistance, with approximately one third of residents experiencing food insecurity. The 4412 Kai Resilience Strategy was developed with the community to move from food insecurity to food resilience and sovereignty. Recognizing that food security is complex and based on multiple causes, six interwoven workstreams were identified to create a multifaceted, coordinated strategy. This includes education, food economy, community, food support, māra kai, and social enterprise. The strategy cultivates local ownership and commitment to change. It creates a broader constituency of support, balancing the urgent need to feed people today with the long-term need to change systems through step-change initiatives. Through this approach, communities can better make sustainable and meaningful changes to their lives and circumstances rather than relying on external resources.

As a seismic hotspot, Nepal has endured many catastrophic earthquakes, including the 2023 Jajarkot quake. These quakes worsen the existing fragilities, resulting in difficulties in accessing healthcare, outbreaks of infectious diseases, mental health problems, and nutritional shortfalls. The article examines the complex web of health consequences, such as infectious and non-infectious diseases and malnutrition, highlighting the need for a global health lens in tackling these issues. It also reveals the long-term health effects, such as mental health disorders and increased disease susceptibility, that emerge after the quake and the importance of enhancing coordination and communication, enforcing building codes, and assisting affected communities in response to the seismic hazards. The article identifies mitigation strategies, community involvement, and international cooperation as key elements in building resilience against future quakes. It discusses the role of climate change in seismic risks and the need for research, innovation, and adaptability in global health interventions, suggesting measures such as strengthening primary healthcare, preventing avoidable health problems through education, and improving supply chains. The article calls for a holistic approach to building resilient health systems, emphasizing community engagement, prevention, and preparedness to protect the health of vulnerable groups in seismic regions.

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'.