Meaningful Engagement Research Articles

Paving the path for implementation of clinical genomic sequencing globally: Are we ready?

Despite the emerging evidence in recent years, successful implementation of clinical genomic sequencing (CGS) remains limited and is challenged by a range of barriers. These include a lack of standardized practices, limited economic assessments for specific indications, limited meaningful patient engagement in health policy decision-making, and the associated costs and resource demand for implementation. Although CGS is gradually becoming more available and accessible worldwide, large variations and disparities remain, and reflections on the lessons learned for successful implementation are sparse. In this commentary, members of the Global Economics and Evaluation of Clinical Genomics Sequencing Working Group (GEECS) describe the global landscape of CGS in the context of health economics and policy and propose evidence-based solutions to address existing and future barriers to CGS implementation. The topics discussed are reflected as two overarching themes: (1) system readiness for CGS and (2) evidence, assessments, and approval processes. These themes highlight the need for health economics, public health, and infrastructure and operational considerations; a robust patient- and family-centered evidence base on CGS outcomes; and a comprehensive, collaborative, interdisciplinary approach.

Patient research partner engagement in OMERACT: Enhancing engagement through the implementation of patient engagement in research tools

ObjectivesThis paper describes the evolution and impact of Patient Research Partners (PRPs) in shaping research within OMERACT and provides a framework to enhance their engagement. This session explored one component of a validated framework to evaluate meaningful patient engagement. It provides insights, identifies opportunities for improvement, and recommends using the Patient Engagement in Research (PEIR) Framework, PEIR Plan Guide (workbook), and PEIRS-22 (scale) to guide and measure PRPs' engagement. MethodsBefore the conference, the team held planning sessions and selected the Feel-Valued component of the PEIR Workbook for exploration. During OMERACT 2023, we discussed this topic using the PEIR Plan Guide in an interactive plenary session. ResultsThe plenary session produced 72 items from 14 breakout tables addressing PEIR Framework themes. ConclusionsThis paper highlights the role and evolution of PRPs in shaping research within OMERACT. It emphasizes enhancing and accurately measuring PRP engagement through the PEIR Framework, PEIR Plan Guide, and PEIRS-22. The insights and methodologies presented aim to fortify future PRP engagement, ensuring it aligns with OMERACT's principles of patient-centred research.

Job Assistant: Job Preparation and Community Engagement Application with AI

This paper outlines the offerings of our application tailored for job seekers, emphasizing the extensive range of job listings provided alongside an interactive community platform and AI Assistant for personalized guidance and support, streamlining the job preparation journey. The research project delves into the pivotal role of job search websites and underscores the importance of efficient user logins on these platforms. Given the growing significance of job placements in sustaining livelihoods, both job seekers and recruiters increasingly rely on job portals to find the ideal match for their requirements. Moreover, job portals facilitate engagement within communities, fostering connections between individuals and companies. This study aims to shed light on the multifaceted benefits of integrating AI-driven features, interactive platforms, and comprehensive job listings within a single application, ultimately enhancing the job search experience and facilitating meaningful engagement within professional communities. Key Words: Employment, AI Job Assistant, Interview preparation, Job hunting, AI-powered job support, Career development.

Lost expectations from a watershed moment—The 2023 UN Water Conference

Highlights The anticipation and optimism surrounding the 2023 UN Water Conference led to high expectations in addressing the global water challenges. The international community gathered in New York did not avail some key opportunities to create robust water institutions and implementation mechanisms. A drastic change in financial mobilization for global water challenges is required, and it must go together with significant institutional enhancements. The global water crisis must be considered a standalone issue and so propagated, while creating meaningful engagements with other sectors of the economy.

From Police Power to Police Practice

Understanding the everyday manifestations of systemic racism, cisheteropatriarchy, and unequal justice for oppressed women and femmes necessitates meaningful engagement with critical law enforcement studies—the study of why and how policing and punishment takes place in carceral societies. Anne Gray Fischer’s The Streets Belong to Us spells out why sexual policing matters for the history of political development, capitalist growth, and socioeconomic inequality in U.S. cities, like Boston, Atlanta, and Los Angeles. Ultimately, as Fischer’s work affirms, urban law enforcement forces have routinely greased the wheels of punitive governance and state violence under the auspices of maintaining control over a contested and shifting social order.

Perceived Values of Public Participation Practices in Budgeting: Insights From Incorporated Local Governments in Oregon

This field notes provide insights into how local officials value different participatory procedures used to inform and invite the public to participation activities, and participatory mechanisms used to solicit public input during budget decision-making processes. The analysis is based on a framework that helps categorize and assess traditional, non-digital participatory practices versus modern, digital ones. Using survey responses from local officials in Oregon, the findings reveal greater value for modern methods like government websites and social media to inform and invite residents to public participation activities, but more traditional methods like public hearings and citizen committees to solicit their input. The author offers practical suggestions for fostering meaningful public engagement, and the need for practitioners is to be adaptable to innovative strategies that guarantees their participatory procedures and mechanisms are inclusive, accessible, and responsive to the changing needs of communities.

Meaningful community engagement through advanced indicator systems for sustainable destination planning

This study advances the measurement of sustainable development in communities and destinations examining socio-ecological, environmental, cultural, and economic dimensions. By integrating qualitive insights within established indicator systems such as the European Tourism Indicator System, it addresses the limitations of traditional, solely quantitative approaches. Carrying out over 400 resident surveys in Co. Clare, Ireland, the research established sustainable indicators and assessed the destination's sustainability through resident-based metrics. For instance, 87% of residents believed that tourism benefits their community, yet only 23% of residents were satisfied with their involvement in planning. Thematic analysis of the open-ended responses provided crucial themes for sustainable destination management, highlighting resident concerns on transport, planning, management, and community involvement and benefits. The study concluded that relying solely on quantitative indicators, limits Destination Management Organizations (DMOs) and planners to Likert scale results, failing to capture nuanced impacts observed by destinations. The study highlights the insufficiency of solely using quantitative indicators, which risk oversimplifying community inputs and misinterpreting resident dissatisfaction, signally a need for diverse solutions to address varied concerns. The study also identified survey fatigue as a governance challenge, potentially hindering future sustainable development efforts. Aligning with the socio-ecological indicators of the community-environment-development nexus call for papers, this interdisciplinary research demonstrates the value of advanced indicator systems in promoting meaningful community engagement and supporting policy formulation for sustainable destination development. It offers a comprehensive framework for integrating resident perspectives and thematic insights into destination management, contributing to a more inclusive and community-based approach to tourism development.

Disentangling e-commerce gamification affordances on recommendation acceptances from a perceived value perspective

PurposeGamification is a strategic approach employed by practitioners to foster meaningful engagement and enhance the acceptance of recommendations. Gamification affordances (e.g. achievement, self-expression, interaction, and cooperation) catalyze significant psychological processes in consumers, leading to behavioral changes. Despite its application, a gap remains in understanding how these gamification affordances in e-commerce contexts impact customers' perceived values and drive recommendation acceptances.Design/methodology/approachEmploying affordance theory and perceived value theory as our foundation, we have crafted a comprehensive framework that addresses the multifaceted nature of e-commerce gamification, thereby unifying the fragmented knowledge in this area. We implemented a quantitative research design to empirically test the proposed model.FindingsThe research reveals that the four principal affordances of gamification – achievement, self-expression, interaction, and cooperation – significantly enrich consumer values across hedonic, utilitarian, and social dimensions. This enrichment facilitates an increased propensity for accepting recommendations.Originality/valueThis study provides a novel lens through which to view the influence of gamification affordances on recommendation acceptance within gamified e-commerce settings. It delineates the effects of each affordance on consumers' perceived value and highlights the pivotal affordances that shape gamified e-commerce experiences. These insights yield actionable strategies for practitioners aiming to refine e-commerce gamification designs and cultivate more engaging consumer interactions.

Meaningful community engagement and involvement in global health and research: 'Changing mindsets with a million conversations' in Sierra Leone.

Meaningful community engagement and involvement in global health and research: 'Changing mindsets with a million conversations' in Sierra Leone.

Addressing Epistemic Injustice: Engaging Children as Environmental Communicators to Support the Long-Term Sustainability of Forest Ecosystems

Closure of a forest for biosecurity purposes led to the marginalisation and disconnection of Year 6 children from a local forest of significance to them in Aotearoa, New Zealand. The marginalisation of children’s voices and concomitantly of their knowledge, ideas, and values from environmental issues can be viewed as an example of epistemic injustice, which manifests widely in the environmental area, particularly in relation to marginalised groups. To counter this marginalisation and promote epistemic justice, we explored how the creative arts involving a child-driven environmental communication project could foster children’s sense of agency by supporting the protection of a local forest affected by a tree disease. We show that the creative arts could facilitate the children’s meaningful engagement in environmental issues in a learning environment that fostered child-centric approaches that enabled children to express their visions for sustainable futures in distinctly unique ways that were relevant to them. Furthermore, enabling the children to participate as environmental communicators re-established their relationship with their local forest and re-balanced the power structures that had led to the children’s sense of marginalisation. The insights on how this child-centred relational approach can promote epistemic justice and provide a meaningful contribution to the long-term sustainable management of forest ecosystems has implications for other marginalised groups.

The role and interplay of institutions in water governance in the Central Rift Valley of Ethiopia.

Institutions can play a key role in coordinating how natural resources are effectively managed and used without over-exploitation. Institutions are laws, policies, and organizational arrangements that permit, forbid or regulate human action. This study aimed to look into the roles of formal and informal institutions, and their interactions in water resources governance in the Central Rift Valley (CRV), Ethiopia. Key informant interviews, focus group discussions, and secondary data sources were employed to collect relevant data. The result of the study indicated that the influence of informal institutions on formal institutions or vice versa was insignificant, and unable to change the actions of water users in the CRV. Other limitations observed in water resources governance in the CRV include a lack of actors' clear roles and responsibilities, absence of meaningful decentralization, limited engagement of key actors in policy development, lack of synergy between the institutions, and absence of enforcement mechanisms. Considering the local contexts and community's traditional knowledge of water governance in water-related policy, rules, and regulations, and enhancing the capacity of local-level institutions, strong interplay among all institutions involved in water governance, and meaningful actors' engagement were recommended to advance the role of institutions in water resources governance in the CRV and in the country. Hence, a mechanism that enables to harmonize formal and informal institutions in water management system can enhance the governance of water resources in the study area and elsewhere in the country.

Power and participation: A systematic review of marine protected area engagement through participatory science Methods

Marine Protected Areas (MPAs) are a critical part of the marine resource management community’s toolbox in seeking a sustainable and vibrant global ocean system. The processes of community engagement with MPAs, however, are rooted in pre-existing power dynamics inherent in environmental governance systems and influenced by historical contexts of colonialism. Marine governance has historically operated in a top-down manner, imposing exclusionary forms of conservation on local communities without affording them equitable power in the process. Meaningful engagement of community members in MPAs has been suggested as one of the key enabling conditions that drive successful marine protection. Specifically, participatory science methods have the potential to engage local communities, elevate local voices and expertise, and strengthen both local communities and scientific learning. This systematic scoping review assesses the peer-reviewed literature to understand the quality and nature of participatory science methods that have been used to engage communities in MPAs. The review highlights that, while participatory science methods are not uncommon in MPAs, they seldom challenge existing power dynamics. The results of this review show that power in MPA processes related to participatory science is generally retained by conventional researchers and MPA managers. Based on these findings, the authors provide recommendations to marine resource management researchers and practitioners to help the ocean governance community support greater power sharing with local communities through equitable and locally appropriate participatory science methods.

Waterscapes meet socio‐ecological models: A relational framework to examine water insecurity and human health and well‐being

Abstract Water insecurity, the inability to benefit from affordable, adequate, reliable and safe water, is one of the greatest contemporary threats facing humans. While ‘water insecurity’, as a concept, is globally recognized and serves an essential function in policymaking, it does not capture the multiple, relational connections between Indigenous peoples and local communities (IPLCs) and water systems. We contend that studies of water insecurity and health among IPLCs can be improved by applying a systematic approach to the concept of waterscapes. The term waterscape describes the socio‐natural relations between humans and water. To make examining waterscapes more systematic and to draw attention to the importance of health within waterscapes, we use a four‐tiered socio–ecological approach to describe the multi‐level interactions between IPLCs and local water systems in the Amazonian watershed. We then apply this four‐tiered model to the case of the Belo Monte dam in the Brazilian Amazon to identify the specific health impacts of disrupting the Xingu River waterscape. Applying the four‐tiered socio‐ecological approach to the Belo Monte case study showed that this dam led to flooding and compromised water quality that local people associated with an increased risk for chronic health conditions, such as kidney and renal diseases, and vector‐borne diseases, such as dengue. Displacement due to the dam threatened food security, economic security, community cohesion and the cultural survival of multiple IPLCs along the Xingu river. Our approach uncovers not only the direct consequences of the dam on water insecurity but also the broader implications for community well‐being and cultural integrity, addressing the diverse challenges arising from human‐water interactions. The four‐tiered approach for assessing waterscapes offers a framework that enables a comprehensive examination of the intricate relations between water and humans. While there are overlaps among the levels, this framework is applicable to other situations where mining, oil extraction and the construction of hydrovías are substantially altering local waterscapes. Tools such as this one can promote more meaningful engagement between researchers, policymakers, and IPLCs in defining the range of outcomes to be considered in social and environmental impact assessments. Read the free Plain Language Summary for this article on the Journal blog.

Mathematics discourse in instruction during functions lessons in grade 10 rural classrooms

Despite the global significance of functions in mathematics education, there has been limited research on how South African rural teachers address specific mathematical concepts related to functions. This qualitative multiple case study, conducted within a post-structural paradigm, delved into the discourses of Grade 10 teachers during functions lessons in rural classrooms. The study focused on the teaching of mathematical concepts related to functions and involved five mathematics teachers from rural school sites in Acornhoek, Mpumalanga Province, South Africa. These teachers were selected based on their experience in teaching mathematics. The research employed semi-structured interviews, unstructured classroom observations, and Video-Stimulated Recall Interviews with all five teachers. By narrowing the focus to one teacher's lesson, this paper analyses the presentation of functions concepts using the Mathematical Discourse in Instruction (MDI) framework. The study revealed that clear teaching materials and learner-engaging instructional methods enable meaningful engagement and concept internalisation. Through the visible use of the components of the MDI framework, the teacher successfully engaged learners, clarified misconceptions, and encouraged learners' participation, ultimately enhancing the coherence and understanding of mathematical concepts related to functions in the Grade 10 classroom.

Pragmatic co-design methodology: a tale of university and retirement village friendship

ABSTRACT Co-authored by academic staff and older adult community members, this paper reports on an incidental and pragmatic co-design model grounded in a round table friendship-informed approach. Interdisciplinary academics met with residents of a proximate retirement community, sharing open discussions with no agenda, including improving engagement between the two communities. The ensuing co-designed programme of outreach activities was of myriad mutual benefits: the retirement community benefited through opportunities for meaningful engagement via inter-generational knowledge-sharing, social connection, and access to expertise and equipment, whilst the University benefited across Learning and Teaching, Research, Engagement, and Commercialisation sectors. This pragmatic co-design approach described resulted in equitable contributions to knowledge generation, exchange, and translation in an interdirectional way. We argue that future research can adopt such an approach, exhibiting potential across all forms of community engaged research.

The role of community engagement in promoting research participants' understanding of pharmacogenomic research results: Perspectives of stakeholders involved in HIV/AIDS research and treatment.

Community engagement (CE) is praised to be a powerful vehicle in empowering communities with knowledge and skills to make informed decisions for better health care. Several CE approaches have been proposed to improve participants' and research communities' understanding of genomic research including pharmacogenomic information and results. However, there is limited literature on how these approaches can be used to communicate findings of pharmacogenomic research to communities of people living with HIV. This study explored stakeholders' perspectives on the role of community engagement in promoting understanding of pharmacogenomic research results among people living with HIV. We adopted a qualitative approach that involved 54 stakeholders between September 2021 and February 2022. We held five focus group discussions among 30 community representatives from five research institutions, 12 key informant interviews among researchers, and 12 in-depth interviews among ethics committee members. A thematic approach was used to analyze the results. Five themes merged from this data and these included (i) benefits of engaging communities prior to returning individual pharmacogenomic research results to participants. (ii) Obtaining community consensus on the kinds of pharmacogenomic results to be returned. (iii) Opinions on how pharmacogenomic research information and results should be communicated at community and individual levels. (iv) Perceived roles of community stakeholders in promoting participants' understanding and utilization of pharmacogenomic research results. (v) Perceived challenges of engaging communities when returning individual results to research participants. Stakeholders opined that CE facilitates co-learning between researchers and research communities. Researchers can adapt existing CE approaches that are culturally acceptable for meaningful engagement with minimal ethical and social risks when communicating pharmacogenomic research results. CE approaches can facilitate understanding of pharmacogenomic research and findings among research participants and communities. Therefore, if creatively adapted, existing and new CE approaches can enable researchers to communicate simple and understandable results of pharmacogenomic research.

294 Strategies for engaging patients in building a model for patient partner engagement to accelerate translational science

OBJECTIVES/GOALS: To describe the strategies our newly created Patient Partners Program has planned for engaging diverse patients in the co-creation of our planned Patient Partner Academy. We will elicit feedback from other CTSAs about their strategies for promoting individual patient partnerships in research. METHODS/STUDY POPULATION: Our program to promote authentic patient-researcher partnerships to advance clinical and translational research is grounded in participatory approaches to maximize meaningful engagement. The process of creating our Patient Partners Academy is co-led by a patient partner and national leader in re-envisioning the role of patients in research, and a University of Michigan faculty member who advocates for patient partnerships in research. Listening sessions and community engagement studios will involve the developers of patient partner training programs, patient partners who have received research capacity training (as well as researchers and patient partners interested in collaborative research. Insights from these sessions will inform the development of learning models and curriculum content. RESULTS/ANTICIPATED RESULTS: Through individual listening sessions and community engagement studios we will collect data on the barriers and facilitators to patient partner engagement in research and the experiences and preferred learning models in patient partner training programs. Both the listening sessions and community engagement studios will be recorded, transcribed, and analyzed for common themes. We aim to answer three questions: What do patient partners need to be meaningfully engaged as equal partners across the research continuum? How can we best engage people who experience serious illness or chronic conditions and may be underserved by healthcare systems? What do researchers, faculty, and clinicians need to create trusting, collaborative relationships with patient partners? DISCUSSION/SIGNIFICANCE: Integrating patient partners into study teams accelerates innovation and translational science, increases the relevance of research findings, improves health outcomes and patient empowerment, and elevates the value of the patient perspective allowing researchers to gain a new point of view from an individual with lived experience.

Identifying barriers to engage with soundscape standards: Insights from national standards bodies and expertsa).

This study explores the engagement of national standards bodies and practitioners with the ISO 12913 series on soundscape. It reveals critical challenges in stakeholder engagement, communication, competence, and practical application. A strategic roadmap, aligned with the normalization process theory, is proposed, comprising meaningful stakeholder engagement, building workability and integration, and community building and reflective monitoring. Results underscore the influence of national priorities, communication gaps, limited resources, and the need for practical guidance. Future efforts should focus on promoting cross-disciplinary collaboration and developing tools to quantify the societal and economic impact of soundscape interventions, addressing the multifaceted barriers identified.

Navigating the Landscape of Medical Device Advisories: A Special Report From the Canadian Heart Rhythm Society Device Advisory Committee

Cardiac implantable electronic devices (CIEDs) are often important for regulating cardiac rate and rhythm. Pacemakers and defibrillators are among the top 10 most implanted medical devices, with > 1.5 million devices implanted annually. Although millions of patients have benefited with improved quality of life and survival, CIED systems are becoming increasingly complex and do not always perform according to expectations. Advisory notices communicate important information about the safety and performance of a medical device to health care providers and patients. Medical device recalls are common, with > 35 unique device recalls in the past 5 years. From an ethical standpoint, CIED recalls highlight a range of considerations including the consent process, duty to report, how best to promote autonomous decision-making, trust in the health care system, as well as disproportionate effects of these considerations on equity-deserving groups. The purpose of the current article is to review and advise regarding the process around medical device advisory and recall, with a specific focus on clinicians caring for patients affected by these devices. We have sought the input of a lawyer, a patient advocacy group, and an ethicist to guide the clinical management of, and communications regarding, device recalls and advisories. Diligent surveillance and a clear, transparent patient consent process regarding these small but potentially serious device anomalies is paramount in ensuring patients believe they are safe and informed. Meaningful patient engagement helps to ensure optimal communication and disclosure mechanisms before implantation and throughout follow-up, accessibility of information in the initial implant and recall action process, and trust in health care systems and providers.

A protocol for stakeholder engagement in deliver-EE: A pragmatic randomized comparative effectiveness trial evaluating effects of meal delivery on the ability of homebound older adults to remain in the community

BackgroundFew clinical trials include a detailed protocol for stakeholder engagement in the design and execution of the clinical trial. Deliver-EE is a pragmatic clinical trial to assess how different types of home-delivered meals can affect older adults' health and well-being. We present the protocol for stakeholder engagement in this national, multi-site trial and initial findings from our efforts. MethodsTwenty-nine participants were recruited to two stakeholder advisory panels. The “Lived Experience Perspectives” panel is defined as the clients, caregivers, and meal delivery drivers with first-hand knowledge and lived experiences with meal delivery. The “System Perspectives” panel is defined as representatives from the larger financial, clinical, regulatory, and operational environments in which meal delivery to homebound older adults operate. Together, these two groups holistically represent interested parties that coordinate the interdependent elements of meal delivery to homebound older adults in order to: 1) inform our understanding of what matters most to older adults, their families, and the larger health and social care systems; 2) provide strategies to overcome challenges conducting the study; 3) enhance dissemination and uptake of study findings; and 4) identify opportunities for future research. ResultsAlthough stakeholder partners share a common goal of using home-delivered meals as a method to improve outcomes for homebound older adults, individuals have different goals for participating as advisors in this research. ConclusionsUnderstanding what individual stakeholders hope to gain from their participation is critical in designing an effective engagement protocol and critical for meaningful and rigorous stakeholder engagement in clinical trials.