Meaningful Stakeholder Research Articles

Involving society in science: Reflections on meaningful and impactful stakeholder engagement in fundamental research.

Open Science calls for transparent science and involvement of various stakeholders. Here are examples of and advice for meaningful stakeholder engagement.

Beyond the social license to operate: Whole system approaches for a socially responsible mining industry

The demand for minerals, metals and rare-earth elements is rapidly growing to support the transition to low-carbon energies, and the mining industry must increase its supply while facing complex Environmental, Social and Governance (ESG) risks. Traditionally relying on its engineering expertise to maximize ore extraction, the sector must now find ways to sustain its production while facing increased scrutiny from the public, civil societies and shareholders alike. The paper reviews current practice in sustainability assessment to highlight sector-specific characteristics and the notion of trust as central to effective project developments. Because the social interface of extractive operations is complex, dynamic and non-linear in nature, we recommend going beyond the aim of obtaining a social license to operate and use Systems Thinking to fully embed Corporate Social Responsibility (CSR) at the core of strategic mine planning. System Dynamics can foster interdisciplinary collaborations by bridging together social and technical flows within simulation models to identify sustainable levers of change. We present the development of a stock and flow model quantifying causal mechanisms between the use of cyanide, the environment, communities and public trust, and operational productivity. Industry practitioners, researchers and facilitators can use the model as an adaptable framework to engage with systems modelling in mining. We recommend its use in conjunction with meaningful stakeholder’s engagement to ensure shared understanding, reduced uncertainty and long-term benefits for all.

Considerations for designing and implementing combination HIV cure trials: findings from a qualitative in-depth interview study in the United States

BackgroundAn increasing number of HIV cure trials involve combining multiple potentially curative interventions. Until now, considerations for designing and implementing complex combination HIV cure trials have not been thoroughly considered.MethodsWe used a purposive method to select key informants for our study. Informants included biomedical HIV cure researchers, regulators, policy makers, bioethicists, and community members. We used in-depth interviews to generate ethical and practical considerations to guide the design and implementation of combination HIV cure research. We analyzed the qualitative data using conventional content analysis focused on inductive reasoning.ResultsWe interviewed 11 biomedical researchers, 4 community members, 2 regulators, 1 policy researcher, and 1 bioethicist. Informants generated considerations for designing and implementing combination interventions towards an HIV cure, focused on ethical aspects, as well as considerations to guide trial design, benefit/risk determinations, regulatory requirements, prioritization and sequencing and timing of interventions, among others. Informants also provided considerations related to combining specific HIV cure research modalities, such as broadly neutralizing antibodies (bNAbs), cell and gene modification products, latency-reversing agents and immune-based interventions. Finally, informants provided suggestions to ensure meaningful therapeutic improvements over standard antiretroviral therapy, overcome challenges of designing combination approaches, and engage communities around combination HIV cure research.ConclusionThe increasing number of combination HIV cure trials brings with them a host of ethical and practical challenges. We hope our paper will inform meaningful stakeholder dialogue around the use of combinatorial HIV cure research approaches. To protect the public trust in HIV cure research, considerations should be periodically revisited and updated with key stakeholder input as the science continues to advance.

How to assess quality of life in persons with chronic kidney disease.

Chronic kidney disease (CKD) significantly impacts many aspects of life, health, and wellbeing. People with CKD have individual priorities for their care which may differ from those valued by clinicians and policy makers. The patient experience is broadly captured by the concept of quality of life (QoL) which is increasing assessed in research and used to guide clinical and policy decision making. Appropriate selection and application of QoL assessment tools are essential for high-quality research and patient care. This article summarises the current approaches to QoL assessment in CKD and outlines aspirations for future improvement. Commonly used tools for assessment of QoL in CKD include the Short Form-36 and -12 and extended versions adapted for specific use in kidney patients (KD-QoL), and the EQ-5D. However, a wide range of other instruments are also reported, making comparisons between research findings challenging. Few of the tools are adequately validated for use in CKD, and relevance to patient values are unclear. Instruments suitable for use in a routine clinical setting are lacking. QoL instruments developed and validated with meaningful CKD stakeholder input are required. The Standardised Outcomes in Nephrology initiative is working to address this need.

Optimizing Hospital Electronic Prescribing Systems: A Systematic Scoping Review.

ObjectiveConsiderable international investment in hospital electronic prescribing (ePrescribing) systems has been made, but despite this, it is proving difficult for most organizations to realize safety, quality, and efficiency gains in prescribing. The objective of this work was to develop policy-relevant insights into the optimization of hospital ePrescribing systems to maximize the benefits and minimize the risks of these expensive digital health infrastructures.MethodsWe undertook a systematic scoping review of the literature by searching MEDLINE, Embase, and CINAHL databases. We searched for primary studies reporting on ePrescribing optimization strategies and independently screened and abstracted data until saturation was achieved. Findings were theoretically and thematically synthesized taking a medicine life-cycle perspective, incorporating consultative phases with domain experts.ResultsWe identified 23,609 potentially eligible studies from which 1367 satisfied our inclusion criteria. Thematic synthesis was conducted on a data set of 76 studies, of which 48 were based in the United States. Key approaches to optimization included the following: stakeholder engagement, system or process redesign, technological innovations, and education and training packages. Single-component interventions (n = 26) described technological optimization strategies focusing on a single, specific step in the prescribing process. Multicomponent interventions (n = 50) used a combination of optimization strategies, typically targeting multiple steps in the medicines management process.DiscussionWe identified numerous optimization strategies for enhancing the performance of ePrescribing systems. Key considerations for ePrescribing optimization include meaningful stakeholder engagement to reconceptualize the service delivery model and implementing technological innovations with supporting training packages to simultaneously impact on different facets of the medicines management process.

Advancing Ocean Governance in Marine Regions Through Stakeholder Dialogue Processes

The poor state of the ocean and the transboundary nature of the marine environment require bold action by States coordinated across sectors and territorial boundaries in order to deal with the manifold challenges the ocean is facing—and with it humankind. Cooperation and coordination among States and stakeholders in marine regions have proven to be important levers for policy implementation and to strengthen ocean governance, yet remain challenging. Transparent and engaging stakeholder dialogue processes have the potential to provide guidance for the necessary transformation toward ocean sustainability and support the attainment of Sustainable Development Goal (SDG) for the ocean, SDG 14 and other interlinked ocean-related targets. The aim of this study is to review the challenges and opportunities of current collaborative efforts, namely multi-stakeholder dialogue and exchange processes, within and between marine regions to accelerate transformative action, contributing to these global goals. This paper builds on knowledge co-production and collaborative governance literature, and reviews experiences by stakeholders with ocean-related science-policy interfaces in an effort to strengthen regional ocean governance. As an exemplary case of such interfaces, this study assesses the Marine Regions Forum, a newly established inclusive dialogue and exchange platform for diverse actors from marine regions that aims to provide an informal space for joint learning and support regional action and international governance processes alike. Employing latent content analysis of interviews with experts, critical common barriers that hamper current collaborative efforts amongst stakeholders in marine regions are identified, such as fragmented governance frameworks, power and resource imbalances, and lack of meaningful stakeholder engagement. Pathways to address these challenges, such as through common goal orientation, contextualisation, inclusivity, trust building and meaningful continuous interactions are also identified. This paper concludes by discussing the value added of transparent and inclusive collaborative processes in the transformation of ocean governance toward achieving sustainability.

Progress in climate change adaptation research

The scientific literature on climate change adaptation has become too large to assess manually. Beyond standard scientometrics, questions about if and how the field is progressing thus remain largely unanswered. Here we provide a novel, inquisitive, computer-assisted evidence mapping methodology that combines expert interviews (n = 26) and structural topic modelling to evaluate open-ended research questions on progress in the field. We apply this to 62 191 adaptation-relevant scientific publications (1988–2020), selected through supervised machine learning from a comprehensive climate change query. Comparing the literature to key benchmarks of mature adaptation research, our findings align with trends in the adaptation literature observed by most experts: the field is maturing, growing rapidly, and diversifying, with social science and implementation topics arising next to the still-dominant natural sciences and impacts-focused research. Formally assessing the representativeness of IPCC citations, we find evidence of a delay effect for fast-growing areas of research like adaptation strategies and governance. Similarly, we show significant topic biases by geographic location: especially disaster and development-related topics are often studied in Southern countries by authors from the North, while Northern countries dominate governance topics. Moreover, there is a general paucity of research in some highly vulnerable countries. Experts lastly signal a need for meaningful stakeholder involvement. Expanding on the methods presented here would aid the comprehensive and transparent monitoring of adaptation research. For the evidence synthesis community, our methodology provides an example of how to move beyond the descriptive towards the inquisitive and formally evaluating research questions.

Scenario-Based Approaches to Change Management in Fisheries Can Address Challenges With Scale and Support the Implementation of an Ecosystem Approach to Fisheries Management

The Ecosystem Approach to Fisheries (EAF) management, recognising complexity, aims for the holistic, sustainable management of fisheries to promote healthy marine ecosystems and sustainable livelihoods. Effective implementation of the EAF has been problematic as we continue to grapple with issues of scale, knowledge integration and meaningful stakeholder engagement. Scenario-planning approaches in marine social ecological systems (SES) can address some of these challenges. Using systems-thinking, scenario-planning presents the opportunity to address challenges simultaneously at different scales of interaction by addressing the needs at smaller and larger decision-making scales. We here present a prototype scenario-based approach in which we used structured decision-making tools (SDMTs) in an iterative and interactive research process with marginalised stakeholders in a small-scale fishery in South Africa’s southern Cape. Using this approach presented an opportunity for fishers to consider pathways for future responses to change while enhancing personal and local adaptive capacity. At the same time, these marginalised fishers were provided with an important opportunity to freely air their views while engaging with tools new to them. The process did not only benefit fishers, but also provided valuable insights into how they view and experience their marine SES. The use of these tools has provided a means to integrate different knowledge streams, identifying ways in which challenges presented by scale in SES is better addressed. As a next step in the prototype development, expansion to more diverse stakeholders in the biogeographical region relevant for this fishery is recommended. We highlight how this approach can contribute to multi-level governance. When considering EAF implementation, we highlight how engaging marginalised stakeholders need not mean losing the reproducible, transparent processes required for modern management. Lastly, we discuss how multi-scalar flow of information could improve the implementation of an EAF in a developing society, such as that of South Africa.

The Challenges of Managing Depredation and Bycatch of Toothed Whales in Pelagic Longline Fisheries: Two U.S. Case Studies

Direct interactions with fisheries are broadly recognized as the leading conservation threat to small cetaceans. In open-ocean environments, one of the primary gear types implicated in these interactions is the pelagic longline. Unlike accidental entanglement in driftnets or deliberate entrapment by purse-seines, interactions between cetaceans and longlines are often driven by attraction of the animals to feed on bait or fish secured on the gear, a behavior known as depredation. Many small and medium-sized delphinid species have learned to exploit such opportunities, leading to economic costs to fisheries and a risk of mortality to the animals from either retaliation by fishermen or hooking or entanglement in fishing gear. Two pelagic longline fisheries in the United States experience depredation and bycatch by odontocete depredators: the Hawai‘i deep-set longline fishery, which is depredated primarily by false killer whales (Pseudorca crassidens), and the Atlantic pelagic longline fishery depredated primarily by short-finned pilot whales (Globicephala macrorhynchus). These fisheries are among the most intensively documented and managed pelagic longline fisheries in the world, with high levels of observer coverage, and bycatch mitigation measures required to reduce the mortality of seabirds, sea turtles and cetaceans. Both fisheries have active, multi-stakeholder “Take Reduction Teams,” enacted under the U.S. Marine Mammal Protection Act (MMPA), that are tasked to develop measures to reduce the bycatch of cetaceans below statutory reference points. Consequently, these two Teams represent model processes within which to address depredation and bycatch, having access to detailed, high-quality data on the nature and frequency of interactions with cetaceans, meaningful stakeholder involvement, resources to test potential solutions, and the institutional will to improve outcomes. We review how mitigation strategies have been considered, developed, and implemented by both Teams and provide a critical analysis of their effectiveness in addressing these problems. Notably, in the absence of straightforward avoidance or deterrence strategies, both Teams have developed gear and handling strategies that depend critically on comprehensive observer coverage. Lessons offered from these Teams, which have implemented consensus-driven management measures under a statutory framework, provide important insights to managers and scientists addressing other depredation problems.

Design and execution of a public randomization ceremony to enhance stakeholder engagement within a cluster randomized trial to improve tuberculosis diagnosis in Uganda

Public randomization ceremonies have been proposed as a strategy to strengthen stakeholder engagement and address concerns and misconceptions associated with trial randomization. However, there are few published examples that describe how to conduct a public randomization ceremony with meaningful stakeholder engagement or how such ceremonies impact stakeholder perceptions about randomization and the randomization process. Cluster randomization for the GeneXpert Performance Evaluation for Linkage to Tuberculosis Care (XPEL-TB) trial was conducted at a public randomization ceremony attended by 70 stakeholders in Kampala, Uganda. Presentations given by the Acting Assistant Commissioner from the Uganda National Tuberculosis and Leprosy Programme and trial investigators emphasized how the trial aimed to further national TB goals, as well as how stakeholders contributed to the intervention design. The purpose and process of randomization were described using simple text and visuals. Randomization was an interactive activity that required participation of stakeholders from each trial site. A survey administered to stakeholders at the end of the ceremony suggested high comprehension of randomization (98%), trust in the randomization process (96%), and satisfaction with randomization outcomes (96%). Public randomization ceremonies should be considered more routinely to engage stakeholders in and address potential concerns about the fairness and impartiality of the randomization process for community-based trials.

Community engagement during COVID: A field report from seven CTSAs.

Prior to the COVID pandemic, many CTSAs employed face-to-face interactions to conduct most of their community engagement (CE) activities. During the COVID pandemic, such engagement had to be curtailed and alternatives needed to be formulated. In addition, Community Engaged Research (CEnR) teams refocused their efforts to address this public health crisis. To obtain a general understanding of how CTSAs have conducted CE and CEnR during the COVID pandemic, we invited seven CTSA CE leaders to provide brief field reports of their activities during the pandemic. This included how their approaches to CE and CEnR were modified during the COVID-19 pandemic and key lessons learned. We found that despite numerous challenges, all seven CTSAs CE cores were able to successfully carry out CE and CEnR. We also found that the fundamental principles of meaningful and authentic stakeholder engagement were of paramount importance during the pandemic. Through virtual approaches, all sites had considerable success in maintaining CE in during the COVID pandemic. They also leveraged existing bi-directional community partnerships to carry out meaningful and impactful research. This included both new COVID CEnR and also innovative approaches to sustain prior non-COVID research. These findings suggest that academic-community partnerships must be fostered and sustained over the many years so that when such crises emerge, all partners can build on existing trust and mutual respect. The lessons learned and the new tools and approaches developed would be key in addressing any such future public health emergencies.

Corporate governance paradigms of hazardous industries: Enduring challenges of Britain’s civil nuclear industry

This article discusses risk management processes in Britain’s civil nuclear industry from a corporate governance perspective. As an example of a hazardous industry that can inflict catastrophic environmental damage and fatalities, effective governance of Britain’s nuclear industry is a critical issue. Yet the industry’s history of corporate governance suggests that processes of corporate governance have regularly failed to meet core requirements of its stakeholders. A core requirement is for governance designs that recognize the interests of public owner–stakeholders. In meeting this requirement, the article offers a framework for a relationship-driven form of corporate governance that enables meaningful stakeholder engagement in decision-making.

Sex Work Research, Ethics Review Processes, and Institutional Challenges for “Sensitive” Collaborative Research

This article examines challenges and barriers seemingly endemic to the research ethics review process. We argue that these challenges and barriers disempower community stakeholders in sex work research and that they put our studies and those who consent to participate in them at risk. To advance this position, we interrogate three of our own encounters with research ethics boards (REBs) in the context of current scholarship on meaningful collaborative research and REB roles and responsibilities in relation to sex work and other sensitive research. As these encounters illustrate, there is an urgent need for established REB processes to be opened up to allow for and respect non-academic expertise. We suggest that such policy and process revisions are particularly important given the growing requirement for meaningful stakeholder involvement in all aspects of studies that engage marginalized groups. In this new anti-oppressive collaborative framework, stakeholder community expertise thus informs study development and design, as well as the collection and analysis of data, and decisions regarding where and how study findings are to be shared. Research ethics review processes must be revised accordingly to acknowledge and give due consideration to community-based expertise. We conclude by proposing institutional and community-based strategies for resisting and revising current research ethics review structures and processes. Applying the lens of whore stigma to select REB encounters, this article contributes to existing research about ethical and anti-oppressive sex work research methods and methodologies, arguing that we must account for REB encounters in the growing body of theory that seeks to understand and articulate how best to conduct sex work research in partnership with sex workers.

Stakeholder Engagement in Pragmatic Clinical Trials: Emphasizing Relationships to Improve Pain Management Delivery and Outcomes.

The NIH-DOD-VA Pain Management Collaboratory (PMC) supports 11 pragmatic clinical trials (PCTs) on nonpharmacological approaches to management of pain and co-occurring conditions in U.S. military and veteran health organizations. The Stakeholder Engagement Work Group is supported by a separately funded Coordinating Center and was formed with the goal of developing respectful and productive partnerships that will maximize the ability to generate trustworthy, internally valid findings directly relevant to veterans and military service members with pain, front-line primary care clinicians and health care teams, and health system leaders. The Stakeholder Engagement Work Group provides a forum to promote success of the PCTs in which principal investigators and/or their designees discuss various stakeholder engagement strategies, address challenges, and share experiences. Herein, we communicate features of meaningful stakeholder engagement in the design and implementation of pain management pragmatic trials, across the PMC. Our collective experiences suggest that an optimal stakeholder-engaged research project involves understanding the following: i) Who are research stakeholders in PMC trials? ii) How do investigators ensure that stakeholders represent the interests of a study's target treatment population, including individuals from underrepresented groups?, and iii) How can sustained stakeholder relationships help overcome implementation challenges over the course of a PCT? Our experiences outline the role of stakeholders in pain research and may inform future pragmatic trial researchers regarding methods to engage stakeholders effectively.

Living on the Edge: Interrogating Migrant Labourer Lives of Bengaluru/Bangalore

This paper proposes to create a discourse of migrant labourers in the city of Bengaluru/Bangalore, especially during the current period of crisis ensued by COVID-19 pandemic. Despite being an essential part of the informal sector economy these workers are often rendered invisible from the urban social, cultural and political spaces of this global city. The United Nations Conference on Housing and Sustainable Development (Habitat III), held in Quito, Ecuador in October 2016 declared the New Urban Agenda (NUA) — that was adopted as the guideline for urban development for the next twenty years — with the vision of ‘cities for all’. But in reality, for their regional, linguistic, cultural, class and caste differences, the migrant labourers in the city are marginalized from the mainstream urban scene. The paper investigates the historiography of the migrant labourers in the city to interrogate the space they occupy in Bengaluru/Bangalore. Some of the important questions the paper attempts to grapple with are also about their fight for survival amidst the outbreak of COVID-19 pandemic and the relief measure responses from the state. Evidences show, the immigrant labourers are perceived as the city’s necessary ‘Other’ who are needed to build the city but barely finds any representation in the planning grids of urban architects. Their direct experiences and negotiations with ‘the lived city’, available from news archives and other secondary sources, will be interrogated through the lens of ‘the Right to the City’, a concept introduced by Henri Lefebvre. The paper attempts to explore if they have any agency to assert their rights to the city and become a meaningful stakeholder in the democratic control over Bengaluru/Bangalore.

Stakeholder engagement in the governance of marine migratory species: barriers and building blocks

Meaningful stakeholder engagement is important to collaborative decision-making and to effective polycentric governance, particularly when managing cross-scale environmental issues like those involving marine migratory species. In this paper, we explore the barriers to, and opportunities for, stakeholder involvement in the governance of threats to marine migratory species in eastern Australia, using semi-structured qualitative interviews and a focus group, as an example of the generic problem of managing migratory species within a large range state with multiple jurisdictions. Respondents identified several barriers to, and opportunities for, improved stakeholder involvement in the governance of marine migratory species, corresponding to 4 main themes: decision-making processes, information sharing, institutional structures, and participation processes. Respondents indicated that the governance system protecting marine turtles, dugongs, humpback whales, and non-threatened migratory shorebirds in eastern Australia would benefit from the introduction of new information pathways, reformed institutional structures (including environmental legislation), and improved participatory pathways for non-government stakeholders. Such changes could help harmonise the process of managing these species, leading to more effective conservation management throughout their range.

Preparing to Cocreate: Using Learning Circles to Ready Extension Professionals for Meaningful Stakeholder Engagement

Extension professionals are being asked to address complex public issues. Doing so requires cocreative approaches that engage, in a significant way, the people affected by these issues. Successful engagement, however, requires specific skills and a cocreative mind-set. Extension professionals in two states participated in learning circles to improve their engagement skills. Using a survey and interviews, we studied the impact of the learning circle experience on participants. We found that learning circles helped participants practice colearning, build relationships, and change their mind-sets in ways that could move their work toward more cocreative efforts.

Regional Event Tourism Funding Policies: A Strategic-Relational Critique of Current Practice

Taking a strategic-relational approach we critique a range of event tourism funding policies and practices that seek to create regional and/or national event strategies. A multiple case study method combining document analysis and key informant interviews within selected regions provides insights into the political nature of event funding, the equity of its distribution, and the decision processes involved. Programs were found to operate in a sensitive and complex context due to intertwined power relationships between policy and agency embedded within governments. We conclude that to bring about broader benefits and legacies a paradigm shift is needed to rebalance economic and social outcomes within funder objectives and governance structures. This needs to include innovation in evaluation and wider more meaningful stakeholder engagement. The study shows that without fundamental change in policy, national and regional funding programs are likely to continue to operate within their existing narrow remit.

Global stakeholder vision for ecosystem‐based marine aquaculture expansion from coastal to offshore areas

AbstractMarine aquaculture is the most promising industry for ensuring future provision of seafood. Yet, the worldwide growth and expansion of this industry have been slower than expected, calling for the identification of environmentally suitable sites while accounting for all factors that could constrain or benefit its establishment. Here, we determine the main obstacles and risks hindering the growth and expansion of marine aquaculture, as well as the needs and recommendations to overcome such constraints. Our analysis is based on results obtained from a consultation process held in 16 study sites located around the world with the participation of 614 stakeholders representing the research community, aquaculture industry, government, conservation groups, and education and fishermen associations. A high level of commonality exists in the main issues hindering aquaculture growth and expansion in coastal, off‐the‐coast and offshore aquaculture with most being attributed to interactions with other maritime activities, including conflicts with other users and administrative procedures, including licensing. Critical needs for improved management and expansion of the aquaculture industry are related to planning and management of developments and technological advances, with economic and market needs featuring to a lesser extent. Key procedures recommended to assist further aquaculture growth are the standardisation and simplification of regulatory frameworks, improvement of governance, and the adoption of participatory processes to facilitate meaningful and productive stakeholder engagement. We strongly recommend stakeholder participation to enhance insights on the full environmental and human dimensions of marine management and for implementation of ecosystem‐based marine spatial planning.

My Stroke Journey: From Self-Advocacy to Patient Advocacy.

My Stroke Journey: From Self-Advocacy to Patient Advocacy.