A framework for building comprehensive cancer center's capacity for bidirectional engagement.

PURPOSE: Community engagement has benefits for cancer centers' work and for its researchers. This study examined the experiences and perceptions of community engagement by members of the Case Comprehensive Cancer Center (Case CCC) to create and implement a framework to meet the needs of the entire cancer center. METHODS: This study included three phases: 1) Semi-structured interviews with 12 researchers from a basic science program to identify needs and suggestions for the support of community engagement; 2) Preliminary interview results informed the development of a survey of 86 cancer center members' about their awareness of and readiness to integrate community outreach and engagement into their research; and 3) The Case CCC Office of Community Outreach and Engagement reviewed the results from phases 1 and 2 to develop and then utilize a framework of engagement opportunities. RESULTS: In the interviews and surveys, cancer center members recognized the importance of community engagement and expressed an interest in participating in COE-organized opportunities for bidirectional engagement. While participation barriers include communication issues, limited awareness of opportunities, and competing priorities, members were open to learning new skills, changing approaches, and utilizing services to facilitate engagement. The framework outlines engagement opportunities ranging from high touch, low reach to low touch, and high reach and was used to develop specific services. CONCLUSION: This study identified varying needs around community engagement using an approach aimed at understanding the perspectives of a community of scientists. Implementing the framework enables reaching scientists in different ways and facilitates scientists' recognition of and engagement with opportunities.

Experiences and Lessons Learned From the RADx-UP Consortium Community Engagement Projects.

In this study, we used emerging community engagement frameworks to describe the structure and outcomes of a large-scale, community-engaged, research-to-practice initiative, RADx-UP. Qualitative methods were used to analyze survey and meeting data from 2022 for RADx-UP projects. Most projects had diverse partners, achieved moderate levels of community engagement, and experienced positive outcomes. Challenges related to engagement readiness and partnership functioning. These findings demonstrate that community engagement is measurable and valuable. However, additional support is needed to achieve the highest engagement. (Am J Public Health. 2024;114(S5):S405-S409. https://doi.org/10.2105/AJPH.2024.307615).

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

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

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

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

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.

Satellite-based deforestation alerts with training and incentives for patrolling facilitate community monitoring in the Peruvian Amazon.

Despite substantial investments in high-frequency, remote-sensed forest monitoring in the Amazon, early deforestation alerts generated by these systems rarely reach the most directly affected populations in time to deter deforestation. We study a community monitoring program that facilitated transfer of early deforestation alerts from the Global Forest Watch network to indigenous communities in the Peruvian Amazon and trained and incentivized community members to patrol forests in response to those alerts. The program was randomly assigned to 39 of 76 communities. The results from our analysis suggest that the program reduced tree cover loss, but the estimated effects from the experiment are imprecise: We estimate a reduction of 8.4 ha per community in the first year (95% CI [-19.4, 2.6]) and 3.3 ha in the second year (95% CI: [-13.6, 7.0]) of monitoring. The estimated reductions were largest in communities facing the largest threats. Data from monitoring records and community surveys provide evidence about how the program may affect forest outcomes. Community members perceived that the program's monitors were new authorities with influence over forest management and that the monitors' incentivized patrols were substitutes for traditional, unincentivized citizen patrols that suffer from free riding and inhibit timely community detection of and responses to deforestation. Should our findings be replicated elsewhere, they imply that externally facilitated community-based monitoring protocols that combine remote-sensed early deforestation alerts with training and incentives for monitors could contribute to sustainable forest management.

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.

Examining the creation of synergy in community coalitions for smoke-free environments in Armenia and Georgia.

Community coalitions depend on their members to synergistically pool diverse resources, including knowledge and expertise, community connections and varied perspectives, to identify and implement strategies and make progress toward community health improvement. Several coalition theories suggest synergy is the key mechanism driving coalition effectiveness. The Community Coalition Action Theory (CCAT) asserts that synergy depends on how well coalitions engage their members and leverage their resources, which is influenced by coalition processes, member participation and satisfaction and benefits outweighing costs. The current study used mixed methods, including coalition member surveys (n = 83) and semi-structured interviews with leaders and members (n = 42), to examine the process of creating collaborative synergy in 14 community coalitions for smoke-free environments in Armenia and Georgia. Members, typically seven per coalition representing education, public health, health care and municipal administration sectors, spent an average of 16 hr/month on coalition-related work. Common benefits included making the community a better place to live and learning more about tobacco control. The greatest cost was attending meetings or events at inconvenient times. Members contributed various resources, including their connections and influence, skills and expertise and access to population groups and settings. Strong coalition processes, greater benefits and fewer costs of participation and satisfaction were correlated with leveraging of member resources, which in turn, was highly correlated with collaborative synergy. Consistent with CCAT, effective coalition processes created a positive climate where membership benefits outweighed costs, and members contributed their resources in a way that created collaborative synergy.

Re-examining Geospatial Online Participatory Tools for Environmental Planning.

Geospatial online participatory tools, or geo-OPTs, are increasingly used worldwide for engaging the public in planning. Yet, despite growth in the adoption and use of geo-OPTs, and the growing scholarship to accompany it, our understanding of their ability to support public participation in environmental planning is still underdeveloped. In this paper, we investigate the application of a geo-OPT by the United States Army Corps of Engineers (USACE), a leading water management agency in the United States, in three contextually and geographically diverse cases. Through a combination of document analysis, interviews, and participant observation, we examine the processes and dynamics associated with the development and use of the geo-OPT Crowdsource Reporter. Our findings highlight the importance of managing geo-OPTs not in isolation or as a panacea but rather as part of a broader planning process that recognizes the complexity and significance of communication in geo-OPT processes. Although it may be tempting and seemingly simple to create and launch these online tools, our research reveals how a lack of intention early on may lead to underuse or misapplication of the tool. More significantly, real damage can be done, like increased public frustration and alienation, resulting in breakdown in communications or even worsening public relations for federal agencies.

Credit for and Control of Research Outputs in Genomic Citizen Science.

Citizen science encompasses activities with scientific objectives in which members of the public participate as more than passive research subjects from whom personal data or biospecimens are collected and analyzed by others. Citizen science is increasingly common in the biomedical sciences, including the fields of genetics and human genomics. Genomic citizen science initiatives are diverse and involve citizen scientists in collecting genetic data, solving genetic puzzles, and conducting experiments in community laboratories. At the same time that genomic citizen science is presenting new opportunities for individuals to participate in scientific discovery, it is also challenging norms regarding the manner in which scientific research outputs are managed. In this review, we present a typology of genomic citizen science initiatives, describe ethical and legal foundations for recognizing genomic citizen scientists' claims of credit for and control of research outputs, and detail how such claims are or might be addressed in practice across a variety of initiatives.

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.

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.

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.

Improving big citizen science data: Moving beyond haphazard sampling.

Citizen science is mainstream: millions of people contribute data to a growing array of citizen science projects annually, forming massive datasets that will drive research for years to come. Many citizen science projects implement a "leaderboard" framework, ranking the contributions based on number of records or species, encouraging further participation. But is every data point equally "valuable?" Citizen scientists collect data with distinct spatial and temporal biases, leading to unfortunate gaps and redundancies, which create statistical and informational problems for downstream analyses. Up to this point, the haphazard structure of the data has been seen as an unfortunate but unchangeable aspect of citizen science data. However, we argue here that this issue can actually be addressed: we provide a very simple, tractable framework that could be adapted by broadscale citizen science projects to allow citizen scientists to optimize the marginal value of their efforts, increasing the overall collective knowledge.

Representation in participatory health care decision-making: Reflections on an Application-Oriented Model.

CONTEXT: The involvement of lay people in health care decision-making processes is now the norm in many countries. However, one important aspect of participation has not received sufficient attention in the past and remains underexplored: representation. OBJECTIVE: This paper explores the question of how public participation efforts in collective health care decision-making processes can attempt to aim for legitimate representation so that those individuals or groups not present can be taken into account in the decisions affecting them. This paper argues that to make decisions that effectively address those affected, representation needs to be seen as a relevant part of any participatory setting. To support this argument, the paper outlines the concepts of participation and representation and transfers them to health care contexts. RESULTS: A conceptual reflection on responsiveness and the characteristics of representative actors in representative-participatory settings is introduced, which could provide actors planning to conduct participatory health care projects with tools to reflect on the merits and possible flaws of participatory constellations. PATIENT OR PUBLIC CONTRIBUTION: The paper contributes to improving public participation in health care decision-making.

Reimagining consumer involvement: Resilient system indicators in the COVID-19 pandemic response in New South Wales, Australia.

BACKGROUND: Reflections on the response to the COVID-19 pandemic often evoke the concept of 'resilience' to describe the way health systems adjusted and adapted their functions to withstand the disturbance of a crisis, and in some cases, improve and transform in its wake. Drawing from this, this study focuses on the role of consumer representatives in healthcare services in initiating changes to the way they participated in the pandemic response in the state of New South Wales in Australia. METHODS: In-depth interviews were conducted with two cohorts of consumer representatives. Cohort A included experienced and self-identified consumer leaders, who worked together in a COVID-19 Consumer Leaders Taskforce; Cohort B included participants outside of this group, and purposively included consumer representatives from rural and regional areas, and culturally and linguistically diverse communities. RESULTS: The pause in consumer engagement to support health service decision-making in responding to the pandemic forced consumer representatives to consider alternative approaches to participate. Some initiated networking with each other, forming new collaborations to produce consumer-led research and guidelines on pandemic-related patient care. Others mobilized support from community and politicians to lobby for specific healthcare issues in their local areas. CONCLUSION: The response to the COVID-19 pandemic made visible the brittle nature of previous engagement processes of involving consumers in organizational design and governance. However, the momentum for proactive self-organization in an unexpected crisis created space for consumer representatives to reset and reimagine their role as active partners in health services. Their ability to adapt and adjust ways of working are key assets for a resilient health system. PATIENT OR PUBLIC CONTRIBUTION: This project is a collaborative study between academic researchers and health consumer (patient and public) representatives. It followed the principles of codesign and coresearch, whereby both consumer representatives and academic researchers contributed equally to all stages of the project. The study was cofunded by both academic institutions and consumer representative organizations.

Citizen science frontiers: Efficiency, engagement, and serendipitous discovery with human-machine systems.

Citizen science has proved to be a unique and effective tool in helping science and society cope with the ever-growing data rates and volumes that characterize the modern research landscape. It also serves a critical role in engaging the public with research in a direct, authentic fashion and by doing so promotes a better understanding of the processes of science. To take full advantage of the onslaught of data being experienced across the disciplines, it is essential that citizen science platforms leverage the complementary strengths of humans and machines. This Perspectives piece explores the issues encountered in designing human-machine systems optimized for both efficiency and volunteer engagement, while striving to safeguard and encourage opportunities for serendipitous discovery. We discuss case studies from Zooniverse, a large online citizen science platform, and show that combining human and machine classifications can efficiently produce results superior to those of either one alone and how smart task allocation can lead to further efficiencies in the system. While these examples make clear the promise of human-machine integration within an online citizen science system, we then explore in detail how system design choices can inadvertently lower volunteer engagement, create exclusionary practices, and reduce opportunity for serendipitous discovery. Throughout we investigate the tensions that arise when designing a human-machine system serving the dual goals of carrying out research in the most efficient manner possible while empowering a broad community to authentically engage in this research.

[Methods to collect communities' values and preferences about health systems coverage]. / Participación ciudadana: mecanismos utilizados para captar información sobre valores y preferencias en procesos de decisiones de priorización o cobertura de salud. Una revisión pragmática.

Health systems do not have the capacity to finance all services. The impact of choosing one option or another is important in order to prioritize health resources. Citizen participation can help to set priorities or to select the interventions that will receive public funding. We reviewed the literature searching for articles that reported mechanisms to gather information about citizens' values or preferences about health system coverage. We identified 363 publications, 18 articles were analyzed in full, and 7 articles were included in the review. Three articles were European, two were from Australia and two from Latin America. The most commonly used mechanisms to gather information were interviews and surveys. We conclude that there is a limited number of articles with examples of tools to capture information about values and preferences in health decision processes. The main barrier observed was the lack of standardized processes to collect the values and preferences of the community.

Digital storytelling to facilitate consumer engagement in healthcare research.

ISSUES ADDRESSED: Consumer engagement in healthcare research presents with challenges, one of which is ensuring that the consumers have comprehended the often complex concepts in scientific research. This study aimed to compare how well older adult consumers understood video-based versus written and verbal description approaches to provision of information. METHODS: Twenty adults in the community aged 60 years and older were recruited for this study; half were randomised to receive the information via a digital story, and the other half received the same information from a written brief. Both mediums were presented via video teleconferencing. An interviewer was present to ask questions and address queries. RESULTS: Participants who viewed the digital story requested for clarifications less frequently compared to those who received the written brief. Difficulty in understanding the information rose with complexity, but providing concrete examples aided comprehension of the information. CONCLUSIONS: Complex concepts benefit from the provision of concrete examples to facilitate understanding. Video-based approaches to provision of information are acceptable forms of participant engagement in research and require less human resources to successfully convey key information and facilitate understanding of the information. Research procedures that employ large amounts of data collection and/or asynchronous methods should consider the use of video-based approaches, such as digital stories, to increase cost-effectiveness.