Barriers and drivers of public engagement in palliative care, Scoping review.

BACKGROUND: The integral model of Palliative Care recognizes the community as essential element in improving quality of life of patients and families. It is necessary to find a formula that allows the community to have a voice. The aim of this scoping review is to identify barriers and facilitators to engage community in PC. METHODS: Systematic search was conducted in NICE, Cochrane Library, Health Evidence, CINAHL and PubMed database. KEYWORDS: Palliative care, End of life care, community networks, community engagement, public engagement, community participation, social participation, barriers and facilitators. RESULTS: Nine hundred seventy-one results were obtained. Search strategy and inclusion criteria yielded 13 studies that were read in detail to identify factors influencing community engagement in palliative care, categorized into: Public health and public engagement; Community attitudes towards palliative care, death and preferences at the end of life; Importance of volunteers in public engagement programs; Compassionate communities. CONCLUSION: Societal awareness must be a facilitated process to catalyse public engagement efforts. National policy initiatives and regional system support provide legitimacy and focus is essential for funding. The first step is to get a sense of what is important to society, bearing in mind cultural differences and to channel those aspects through health care professionals; connecting the most assistential part with community resources. The process and long-term results need to be systematically evaluated.

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

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

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

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

Exploring community participation in vectorborne disease control in Southeast Asia: a scoping review protocol.

INTRODUCTION: Vector borne diseases (VBDs) present significant public health challenges in Southeast Asia (SEA), and the increasing number of cases threatens vulnerable communities. Inadequate vector control and management have been linked to the spread of VBDs. To address these issues, community participation has been proposed as a promising approach to enhance health programmes and control of VBDs. This article outlines a protocol for a scoping review of the published literature on community-participation approaches to control VBDs in the SEA region. The primary research question is 'How does community participation complement the control of VBDs in SEA?' This review aims to provide an overview of various approaches and identify barriers and facilitators to effective implementation. METHODS AND ANALYSIS: The research questions will guide the scoping review. In stage 1, peer-reviewed publications from PubMed, Web of Science and Scopus will be searched using predefined search terms related to community-based approaches and VBDs in the SEA region, English, Indonesian and Malay published between 2012 and 2022. In stage 2, the references from relevant articles will be screened for eligibility. In stage 3, eligible articles will be charted in Microsoft Excel to facilitate the review process, and studies will be characterised based on the investigated diseases; this review will also highlight the methodological context of these studies. In stage 4, a thematic analysis will be conducted to derive meaningful findings from the dataset relevant to the research inquiry, followed by writing the results in stage 5. This scoping review aims to be the first to explore community participation in VBD control in the SEA population, providing valuable insights for future research and stakeholders involved in disease control. ETHICS AND DISSEMINATION: This scoping review does not require ethical approval because the methodology synthesises information from available articles. This review is planned for dissemination in academic journals, conference presentations and shared with stakeholders as part of knowledge sharing among those involved in VBD control.

Emerging technologies in citizen science and potential for insect monitoring.

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

Community-Partnered Research appraisal tool for conducting, reporting and assessing community-based research.

Objective The aim of this study was to develop an appraisal tool to support and promote clear, accurate and transparent standards and consistency when conducting, reporting and assessing community-based research. Design Current recommendations for developing reporting guidelines was used with three key differences: (1) an analysis of existing guides, principles and published literature about community engagement, involvement and participation in research using situational and relational maps; (2) feedback and pilot-testing by a community-based research team; and (3) testing the utility and usability of the appraisal tool. Results After a series of iterative revisions, the resulting Community-Partnered Research (CPR) appraisal tool emerged into three products: an elaborate prospective format, a basic retrospective format, and a supplemental checklist format. All three versions of the CPR appraisal tool consist of 11 main question items with corresponding prompts aimed to facilitate awareness, accountability, and transparency about processes and practices employed by professional researchers and community co-researchers throughout four phases of research: (1) partnership and planning, (2) methods, (3) results and (4) sustainment. Conclusion We hope that introducing this tool will contribute to shifting individual and systematic processes and practices towards equitable partnerships, mutual trustworthiness and empowerment among professional researchers and community co-researchers and, in turn, improving the quality of co-created knowledge that benefits communities and creates social change.

Participación ciudadana, imprescindible en procesos comunitarios: experiencia en la realización del diagnóstico de salud de Santpedor / Citizen participation, essential in community processes: experience in the Santpedor health diagnosis

Introducción. En este artículo se quiere plasmar la grata experiencia de hacer un diagnóstico de salud en la población de Santpedor. El diagnóstico se llevó a cabo con acción participativa desde el primer momento y durante todo el proceso. Se hizo con un grupo motor, donde solo dos de las 15 personas que lo representan eran agentes sanitarios. Estos agentes legitimaron el proceso comunitario, coordinaron el grupo motor y lo guiaron. Sin embargo, eran una pieza más del puzle comunitario, siendo los otros 13 agentes comunitarios no sanitarios los auténticos protagonistas al posibilitar llegar a la población y completar el puzle comunitario. Objetivo. Realizar el diagnóstico de salud de Santpedor con acción participativa. Métodos. Se utilizó una metodología mixta secuencial y explicativa, con una parte cuantitativa (descriptivo transversal) y una parte cualitativa (acción participativa). En este artículo se explica la metodología que se utilizó para hacer el diagnóstico de salud de Santpedor y se describen las estrategias participativas para llegar a la población y favorecer la pertinencia en el proceso comunitario, así como las técnicas empleadas para la detección de las necesidades y su priorización. Las técnicas cualitativas utilizadas para la detección de los activos fueron el mapping party y la marcha de activos. Las técnicas empleadas para identificar las necesidades fueron la encuesta y las entrevistas grupales (grupos focales, grupo nominal y entrevistas individuales). Resultados. Se identificaron 604 activos de Santpedor. En el análisis cuantitativo se observó que Santpedor presentaba un gran relevo generacional y un tejido económico diversificado. En el análisis cualitativo, se logró una gran cantidad de información con la que, una vez analizada y trabajada con todo el grupo motor, se confeccionó un listado con 17 necesidades que había que cubrir para mejorar la salud de la población. ... (AU)

Introduction. In this paper we seek to capture the pleasant experience in making a health diagnosis in the Santpedor population. The diagnosis was made with participation from the very first moment and during the entire process. It was made with a driving group where only two of the 15 people representing it were health agents. These agents legitimized the community process, coordinated the driving group and guided it. However, they were just one more piece of the community puzzle, the other 13 non-health community agents being the real protagonists to reach the population and complete the community puzzle. Aim. To make a health diagnosis in Santpedor with the population taking part. Methods. A mixed explanatory sequential methodology was used. Comprised of a quantitative part (cross-sectional descriptive) and a qualitative part (participation). This paper explains the methodology used to made this. It reports the participation used to reach the population and favour relevance in the community process; as well as the techniques used to detect needs and their prioritization. The qualitative techniques used to detect assets were: mapping party, asset march. The techniques used to detect needs were by means of a survey ("bustiada") and group interviews (focus groups, nominal group and individual interviews). Results. A total of 604 Santpedor assets were identified. In the quantitative analysis, it was observed that Santpedor had a major generational change and a diversified economic fabric. In the qualitative analysis, a large amount of information was obtained which, once analyzed and worked on with the entire driving group, led to a list of 17 needs to improve the health of the population. These needs were prioritized by means of a simple vote, where a large citizen participation was attained with 754 votes from the citizens. The first need detected was "housing needs", followed by "public transportation needs", and "work needs". ... (AU)

Escuelas de salud para personas mayores. Espacios que sanan, personas que curan / Health Schools for the elderly. Spaces that heal, people who cure

Las escuelas de salud son proyectos comunitarios con un bagaje y una evidencia científica ya conocidos y demostrados. Su influencia en la mejora de la calidad de vida de las persones mayores con soledad no deseada es uno de sus grandes beneficios. Por este motivo, como equipo de Atención Primaria apostamos por ella. El objetivo principal de la escuela es promover el envejecimiento activo y mejorar el estado de salud percibido por las persones mayores de 60 años participantes. Las escuelas de salud son espacios sanadores. Su repercusión es bidireccional, ya que influye en todas las personas que participan, mejorando su calidad de vida y dotándolas de herramientas útiles y sencillas para su día a día a través de los conocimientos adquiridos y las experiencias compartidas. Generar puntos de encuentro en el barrio enriquece y aporta salud más allá de los centros sanitarios. Salir a la calle, hablar de igual a igual, fomentar las redes de apoyo y vincularse a una red, son elementos que fortalecen y mejoran la vertiente social de las personas, ayudándolas a curar heridas de vida. Apostar por la salud comunitaria, es apostar por la salud en todas sus dimensiones. (AU)

Health schools are community projects with a well-known and proven scientific past and background. Their influence in improving the quality of life for elderly individuals experiencing unwanted loneliness is one of their significant benefits. That's why we, as a primary health care team, decided to support it. The main aim of the school is to promote active aging and enhance the perceived health status of participants aged over 60. Health schools are healing spaces. Their impact is bidirectional, which has an impact on all participants. Our quality of life improves as we share knowledge and experiences, providing us with healing, useful and straightforward tools for our daily lives. Creating meeting points in the neighbourhood enriches us and contributes to our well-being beyond healthcare centres. Going out into the community, having peer to peer conversations, fostering support networks, and connecting with others sustain us and make us socially stronger, healing life's wounds. To take a chance on the community is in essence to bet on health in all its dimensions. (AU)

Intervención participativa comunitaria: necesidades de salud de las personas mayores durante el período de la pandemia por COVID-19 / Community participatory intervention: health needs of older people during the COVID-19 pandemic period

Objetivo. Proponer una intervención participativa comunitaria según las necesidades de salud percibida por las personas mayores del Programa de Salud Cardiovascular de un centro de salud familiar y comunitaria de una comuna de Santiago de Chile durante el período de la pandemia de la COVID-19. Métodos. Se utilizó una metodología participativa de la comunidad, la cual se desarrolló en dos fases: diagnóstico participativo comunitario y desarrollo de la propuesta participativa de una intervención en salud comunitaria. Resultados. Desde el diagnóstico participativo comunitario, los participantes eligieron el desarrollo de un programa educativo fundamentado en las necesidades de salud, además de la entrega de material educativo sobre estilos de vida saludable y recomendaciones para tener un buen control de sus enfermedades. Conclusión. Desde el diagnóstico y planificación participativa, es posible intervenir en pro de las necesidades de las personas, familias y comunidades y capacitarlas en el manejo de su propia salud. (AU)

Aim. To propose a community participatory intervention according to the health needs perceived by elderly people in the Family and Community Health Centre Cardiovascular Health programme of a Santiago de Chile commune during the COVID-19 pandemic. Methods. A community participatory methodology was used, which was developed over two phases: community participatory diagnosis and development of a participatory proposal for a community health intervention. Results. From the community participatory diagnosis, participants opted for development of an educational programme based on health needs, in addition to the delivery of educational material related to healthy lifestyles and recommendations for robust control of their diseases. Conclusion. From diagnosis and participatory planning, it is possible to intervene in favour of the needs of individuals, families and communities and train them in managing their own health. (AU)

Community Engagement in Vaccination Promotion: Systematic Review and Meta-Analysis.

BACKGROUND: Community engagement plays a vital role in global immunization strategies, offering the potential to overcome vaccination hesitancy and enhance vaccination confidence. Although there is significant backing for community engagement in health promotion, the evidence supporting its effectiveness in vaccination promotion is fragmented and of uncertain quality. OBJECTIVE: This review aims to systematically examine the effectiveness of different contents and extent of community engagement for promoting vaccination rates. METHODS: This study was performed in accordance with the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. A comprehensive and exhaustive literature search was performed in 4 English databases (PubMed, Embase, Web of Science, and Cochrane Library) and 2 Chinese databases (CNKI and Wan Fang) to identify all possible articles. Original research articles applying an experimental study design that investigated the effectiveness of community engagement in vaccination promotion were eligible for inclusion. Two reviewers independently performed the literature search, study selection, quality assessment, and data extraction. Discrepancies were resolved through discussion, with the arbitration of a third reviewer where necessary. RESULTS: A total of 20 articles out of 11,404 records from 2006 to 2021 were retrieved. The studies used various designs: 12 applied single-group pre-post study designs, 5 were cluster randomized controlled trials (RCTs), and 3 were non-RCTs. These studies targeted multiple vaccines, with 8 focusing on children's immunization, 8 on human papillomavirus vaccine, 3 on hepatitis B virus vaccine, and 1 on COVID-19 vaccine. The meta-analysis revealed significant increases in vaccination rates both in pre-post comparison (rate difference [RD] 0.34, 95% CI 0.21-0.47, I2=99.9%, P<.001) and between-group comparison (RD 0.18, 95% CI 0.07-0.29, I2=98.4%, P<.001). The meta-analysis revealed that participant recruitment had the largest effect size (RD 0.51, 95% CI 0.36-0.67, I2=99.9%, P<.001), followed by intervention development (RD 0.36, 95% CI 0.23-0.50, I2=100.0%, P<.001), intervention implementation (RD 0.35, 95% CI 0.22-0.47, I2=99.8%, P<.001), and data collection (RD 0.34, 95% CI 0.19-0.50, I2=99.8%, P<.001). The meta-analysis indicated that high community engagement extent yielded the largest effect size (RD 0.49, 95% CI 0.17-0.82, I2=100.0%, P<.001), followed by moderate community engagement extent (RD 0.45, 95% CI 0.33-0.58, I2=99.6%, P<.001) and low community engagement extent (RD 0.15, 95% CI 0.05-0.25, I2=99.2%, P<.001). The meta-analysis revealed that "health service support" demonstrated the largest effect sizes (RD 0.45, 95% CI 0.25-0.65, I2=99.9%, P<.001), followed by "health education and discussion" (RD 0.39, 95% CI 0.20-0.58, I2=99.7%, P<.001), "follow-up and reminder" (RD 0.33, 95% CI 0.23-0.42, I2=99.3%, P<.001), and "social marketing campaigns and community mobilization" (RD 0.24, 95% CI 0.06-0.41, I2=99.9%, P<.001). CONCLUSIONS: The results of this meta-analysis supported the effectiveness of community engagement in vaccination promotion with variations in terms of engagement contents and extent. Community engagement required a "fit-for-purpose" approach rather than a "one-size-fits-all" approach to maximize the effectiveness of vaccine promotion. TRIAL REGISTRATION: PROSPERO CRD42022339081; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=339081.

IMPAACT: IMproving the PArticipAtion of older people in policy decision-making on common health CondiTions - a study protocol.

INTRODUCTION: Rapid population ageing is a demographic trend being experienced and documented worldwide. While increased health screening and assessment may help mitigate the burden of illness in older people, issues such as misdiagnosis may affect access to interventions. This study aims to elicit the values and preferences of evidence-informed older people living in the community on early screening for common health conditions (cardiovascular disease, diabetes, dementia and frailty). The study will proceed in three Phases: (1) generating recommendations of older people through a series of Citizens' Juries; (2) obtaining feedback from a diverse range of stakeholder groups on the jury findings; and (3) co-designing a set of Knowledge Translation resources to facilitate implementation into research, policy and practice. Conditions were chosen to reflect common health conditions characterised by increasing prevalence with age, but which have been underexamined through a Citizens' Jury methodology. METHODS AND ANALYSIS: This study will be conducted in three Phases-(1) Citizens' Juries, (2) Policy Roundtables and (3) Production of Knowledge Translation resources. First, older people aged 50+ (n=80), including those from traditionally hard-to-reach and diverse groups, will be purposively recruited to four Citizen Juries. Second, representatives from a range of key stakeholder groups, including consumers and carers, health and aged care policymakers, general practitioners, practice nurses, geriatricians, allied health practitioners, pharmaceutical companies, private health insurers and community and aged care providers (n=40) will be purposively recruited for two Policy Roundtables. Finally, two researchers and six purposively recruited consumers will co-design Knowledge Translation resources. Thematic analysis will be performed on documentation and transcripts. ETHICS AND DISSEMINATION: Ethical approval has been obtained through the Torrens University Human Research Ethics Committee. Participants will give written informed consent. Findings will be disseminated through development of a policy brief and lay summary, peer-reviewed publications, conference presentations and seminars.

Facilitating increased participation in clinical trials: what do consumers expect of clinical trial matching websites?

Clinical trials offer access to novel therapies and potential major benefits for patients, but identifying and accessing suitable trials remains a significant challenge for consumers. A burgeoning range of online services aims to meet this need; however, there is a paucity of data on whether these services are addressing the requirements and concerns of consumers. Here, we report our findings from a survey of cancer consumers, with results we believe are relevant to the broader research community.

Salubrízate, un proyecto de armonía con las personas y el entorno / Salubrízate: a project in harmony with the people and the environment

Introducción. Salubrízate es un grupo de procesos y activos comunitarios que realiza intervenciones de educación y promoción de la salud para el bienestar colectivo, en Ourense y alrededores desde el año 2018. Objetivo. El objetivo principal es conocer y responder a las inquietudes de salud de la ciudadanía. Métodos. Esta experiencia se basa en un modelo abierto a la participación, intersectorial y multidisciplinar, que tiene la capacidad de adaptarse a diversas circunstancias sanitarias o sociales, como la COVID. Se trabaja en cuatro áreas: hábitos saludables, bienestar emocional y social, entornos saludables y seguridad ciudadana. Tiene como recursos principales a las personas, los medios de comunicación colectiva como la radio y las redes sociales y diversas instituciones tanto sanitarias como sociales. Resultados. La repercusión de Salubrízate se está midiendo a través del alcance de cada uno de los proyectos llevados a cabo por el grupo, analizando también las debilidades que limitan el proyecto y sus fortalezas. (AU)

Introduction. Salubrízate is a group of community processes and assets that has been implementing health education and promotion interventions for collective well-being in Ourense and its surroundings since 2018.Aim. The main purpose is to be aware of the health concerns of citizens and respond to them.Methods. This experience is based on an intersectoral and multidisciplinary model open to participation, which can adapt to various health or social circumstances, such as COVID-19. The programme works on four areas: healthy habits, emotional and social well-being, healthy environments and citizen safety. Its key resources are people, mass media such as radio and social media and various health and social institutions.Results. The impact, strengths and limiting weaknesses of Salubrízate are being analysed by means of the scope of each project conducted by the group.

Impact of information and deliberation on the consistency of preferences for prioritization in health care - evidence from discrete choice experiments undertaken alongside citizens' juries.

BACKGROUND: Public preferences are an important consideration for priority-setting. Critics suggest preferences of the public who are potentially naïve to the issue under consideration may lead to sub-optimal decisions. We assessed the impact of information and deliberation via a Citizens' Jury (CJ) or preference elicitation methods (Discrete Choice Experiment, DCE) on preferences for prioritizing access to bariatric surgery. METHODS: Preferences for seven prioritization criteria (e.g. obesity level, obesity-related comorbidities) were elicited from three groups who completed a DCE: (i) participants from two CJs (n = 28); (ii) controls who did not participate in the jury (n = 21); (iii) population sample (n = 1,994). Participants in the jury and control groups completed the DCE pre- and post-jury. DCE data were analyzed using multinomial logit models to derive "priority weights" for criteria for access to surgery. The rank order of criteria was compared across groups, time points and CJ recommendations. RESULTS: The extent to which the criteria were considered important were broadly consistent across groups and were similar to jury recommendations but with variation in the rank order. Preferences of jurors but not controls were more differentiated (that is, criteria were assigned a greater range of priority weights) after than before the jury. Juror preferences pre-jury were similar to that of the public but appeared to change during the course of the jury with greater priority given to a person with comorbidity. Conversely, controls appeared to give a lower priority to those with comorbidity and higher priority to treating very severe obesity after than before the jury. CONCLUSION: Being informed and undertaking deliberation had little impact on the criteria that were considered to be relevant for prioritizing access to bariatric surgery but may have a small impact on the relative importance of criteria. CJs may clarify underlying rationale but may not provide substantially different prioritization recommendations compared to a DCE.

Public preferences are an important consideration for priority-setting. However, some people worry that if the public doesn't know much about the issues, their opinions might not lead to the best decisions. To make these decisions, we used two different methods to get people's opinions: Deliberative methods and preference elicitation methods. Deliberative methods gather a small group of people and have them discuss an issue in detail, whereas preference elicitation methods seek opinions through surveying a large group of people.In this paper, we assessed the impact of information and deliberation via a deliberative method (Citizens' Jury, CJ) or a preference elicitation method (Discrete Choice Experiment, DCE) on preferences for prioritising access to bariatric surgery. We used data from two CJs and a DCE focussed on prioritising access to the surgery, to find out if the opinions of those in the CJs changed or stayed the same after they heard information from experts and discussed the topic.The results showed that the important criteria were rather similar across the groups, but the order of importance was a bit different. The people in CJs had more varied opinions after discussing it, while those who didn't discuss it had less varied opinions. The participants in CJs also prioritized those with other health problems more than they did at the beginning.This study helps us understand how different methods can be used to get the public's opinions on healthcare decisions.

Deliberative panels as a source of public knowledge: A large-sample test of the Citizens' Initiative Review.

Evolving US media and political systems, coupled with escalating misinformation campaigns, have left the public divided over objective facts featured in policy debates. The public also has lost much of its confidence in the institutions designed to adjudicate those epistemic debates. To counter this threat, civic entrepreneurs have devised institutional reforms to revitalize democratic policymaking. One promising intervention is the Citizens' Initiative Review (CIR), which has been adopted into law in Oregon and tested in several other states, as well as Switzerland and Finland. Each CIR gathers a demographically stratified random sample of registered voters to form a deliberative panel, which hears from pro and con advocates and neutral experts while assessing the merits of a ballot measure. After four-to-five days of deliberation, each CIR writes an issue guide for voters that identifies key factual findings, along with the most important pro and con arguments. This study pools the results of survey experiments conducted on thirteen CIRs held from 2010 to 2018, resulting in a dataset that includes 67,120 knowledge scores collected from 10,872 registered voters exposed to 82 empirical claims. Analysis shows that reading the CIR guide had a positive effect on voters' policy knowledge, with stronger effects for those holding greater faith in deliberation. We found little evidence of directional motivated reasoning but some evidence that reading the CIR statement can spark an accuracy motivation. Overall, the main results show how trust in peer deliberation provides one path out of the maze of misinformation shaping voter decisions during elections.

Engaging diverse populations in aging research during the COVID-19 pandemic: Lessons learned from four National Institutes of Health funded-Centers.

Background: The COVID-19 pandemic's impact on our personal and professional lives required a rapid adaptation to the evolving health crisis and accumulating social stresses. Established measures to reduce the spread of infection and potential death had a direct effect on ongoing research that involved older adults and underrepresented racial/ethnic groups. Although important to preserve public health, these measures risk further isolation of vulnerable research participant populations and threatened established community partnerships. To address the social and research challenges evolving from the COVID-19 pandemic, four National Institutes of Health funded-Centers that engage with community members to enhance research and advance the science of aging came together to learn from each other's efforts, approaches, and communication with community partners. Methods: Monthly meetings served as a venue to discuss the challenges of engagement with research participants and support community partners during the pandemic. The developed learning community also contributed to recognize and address research staff stress and isolation. We describe how these conversations led our Centers to address unprecedented challenges and sustain community engagement within diverse populations, especially Black/African Americans, Latinos, Middle Eastern/Arab Americans and the oldest-old. Results: The exchange of information resulted in maintaining long standing community relationships and partnerships in the face of the uncertainties generated by the pandemic. The strategies included adapting education programs to reduce risk of infection, recognizing symptoms, promoting vaccination and understanding of the effect of COVID-19 to the brain. Different strategies were used to address the effects of isolation and maintain community engagement. Although new research participant enrollment was a challenge, telephone and virtual visits allowed research participants to remain active in research. Community members participation in virtual learning events was variable, ranging from a dozen to hundreds of participants. Invitations to organize panels about newly developed topics indicated the need for information from trusted sources. Conclusion: In sum, the COVID-19 pandemic re - directed all four Centers' commitment to community service led to developing strategies for social support, which will potentially contribute to transforming public perceptions about research and researchers.

A qualitative study of stakeholder and researcher perspectives of community engagement practices for HIV vaccine clinical trials in South Africa.

Community engagement increases community trust of research and improves trial participation. However, there is limited documented appraisal of community engagement practices. Several HIV vaccine efficacy trials have been conducted in South Africa, the country most affected by HIV, predominantly in collaboration with the HIV Vaccine Trials Network (HVTN). We explored stakeholder and researcher perspectives of the HVTN community engagement practices used in the Gauteng province of South Africa. In 2017, we conducted a qualitative study. Using semi-structured interview guides, we facilitated two group discussions with Community Advisory Board (CAB) members (n = 13), and 14 in-depth interviews with HVTN-affiliated employees (n = 8 in South Africa and n = 6 in the USA). Group discussions and in-depth interviews were audio-recorded, transcribed verbatim, translated into English, and coded using NVIVO 12 Plus software for thematic data analysis. Overall, median age of study participants was 22 (interquartile range 32-54) years, and 74% (n = 20) were female. Three main themes about community engagement emerged: (i) community engagement as an ongoing iterative relationship between researchers and community; (ii) methods of community engagement, encompassing community education by linking with external stakeholders and through awareness campaigns by pamphlet distribution and mass events, working with communities to develop recruitment messages, and working with CAB as a link to communities; and (iii) strategies to improve community engagement, for example, using simple language, linking with religious leaders and traditional healers, and communicating via conventional (newspapers, television, and radio) and social (videos and listicles) media. Our data indicate ways for researchers to improve relationships with community by understanding local needs, strengthening collaborations, and tailoring communication strategies. In this regard, CABs signify critical linkages between researchers and communities. CABs can relay relevant health research needs, advise on the creation of suitable materials, and link researchers more effectively with community leaders and media.

Community Engagement in Nonprofit Hospital Community Health Needs Assessments and Implementation Plans.

CONTEXT: Nonprofit hospitals are required to provide community benefits in exchange for their tax-exempt status. This includes a community health needs assessment (CHNA) to identify community needs and an implementation plan (IP) with strategies to address top needs every 3 years. In addition, hospitals are required to engage community members in these assessments. OBJECTIVE: The objective of this study was to explore community engagement and representation in CHNAs and IPs. DESIGN: The researchers conducted a content analysis of CHNAs and IPs from a nationally representative sample of 503 nonprofit hospitals between 2018 and 2021. MAIN OUTCOME MEASURES: For CHNAs, a coding sheet was used to record the types of community members engaged by hospitals. For IPs, the team coded whether community engagement was reported at all and then performed an in-depth analysis to identify categories of community members, engagement methods used, and roles of community input. Finally, frequencies of categories across IPs were quantified. RESULTS: Eighty-nine percent of hospitals (n = 449) engaged community members in their CHNA, but only 14% (n = 71) engaged community members in their IP. An in-depth look at these IPs found that hospitals engaged underserved/minority populations, low-income populations, high school students, public health experts, and stakeholder organizations. Community members were involved in multiple steps, including brainstorming ideas, narrowing down needs, developing strategies, and reacting to proposed strategies. CONCLUSIONS: Although IPs are intended to benefit the community, there is a lack of community involvement reported in IPs. Hospitals may need incentives, resources, and personnel support to ensure representation of community members throughout the entire CHNA and IP process.