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Concept: Stakeholder

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BACKGROUND: Although significant advances have been made in implementation science, comparatively less attention has been paid to broader scale-up and spread of effective health programs at the regional, national, or international level. To address this gap in research, practice and policy attention, representatives from key stakeholder groups launched an initiative to identify gaps and stimulate additional interest and activity in scale-up and spread of effective health programs. We describe the background and motivation for this initiative and the content, process, and outcomes of two main phases comprising the core of the initiative: a state-of-the-art conference to develop recommendations for advancing scale-up and spread and a follow-up activity to operationalize and prioritize the recommendations. The conference was held in Washington, D.C. during July 2010 and attended by 100 representatives from research, practice, policy, public health, healthcare, and international health communities; the follow-up activity was conducted remotely the following year. DISCUSSION: Conference attendees identified and prioritized five recommendations (and corresponding sub-recommendations) for advancing scale-up and spread in health: increase awareness, facilitate information exchange, develop new methods, apply new approaches for evaluation, and expand capacity. In the follow-up activity, ‘develop new methods’ was rated as most important recommendation; expanding capacity was rated as least important, although differences were relatively minor. SUMMARY: Based on the results of these efforts, we discuss priority activities that are needed to advance research, practice and policy to accelerate the scale-up and spread of effective health programs.

Concepts: Health care, Health economics, Public health, Health, Policy, Stakeholder, Initiative, Avengers: The Initiative

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ABSTRACT Understanding unique perspectives from key stakeholder groups involved in the hand control (HC) industry, including driver rehabilitation specialists (DRSs) who train users how to use their HCs, dealers/installers, and users, may become increasingly important in the United States due to increases in elderly, diabetic, and wounded warrior amputee driving populations. In this exploratory study, phone interviews were conducted with 20 DRSs, 20 dealers/installers, and 20 users regarding their perspectives about HC training, maintenance and operation, and design improvements. Results revealed common views and differences in perspectives about whether HC users should receive training and for how long, when and how often users should receive maintenance on their HCs, and what DRSs, dealers/installers, and users would like to see in the future.

Concepts: United States, Future, Hand, Driver's license, Stakeholder, Exploratory research

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Lebanon is a middle-income country with a market-maximized healthcare system that provides limited social protection for its citizens. Estimates reveal that half of the population lacks sufficient health coverage and resorts to out-of-pocket payments. This study triangulated data from a comprehensive review of health packages of countries similar to Lebanon, the Ministry of Public Health statistics, and services suggested by the World Health Organization for inclusion in a health benefits package (HBP). To determine the acceptability and viability of implementing the HBP, a stakeholder analysis was conducted to identify the knowledge, positions, and available resources for the package. The results revealed that the private health sector, having the most resources, is least in favor of implementing the package, whereas the political and civil society sectors support implementation. The main divergence in opinions among stakeholders was on the abolishment of out-of-pocket payments, mainly attributed to the potential abuse of the HBP’s services by users. The study’s findings encourage health decision makers to capitalize on the current political readiness by proposing the HBP for implementation in the path toward universal health coverage. This requires a consultative process, involving all stakeholders, in devising the strategy and implementation framework of a HBP.

Concepts: Health care, Health economics, Universal health care, Public health, Health insurance, World Health Organization, Stakeholder, Stakeholder analysis

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There is little agreement about what constitutes good death or successful dying. The authors conducted a literature search for published, English-language, peer-reviewed reports of qualitative and quantitative studies that provided a definition of a good death. Stakeholders in these articles included patients, prebereaved and bereaved family members, and healthcare providers (HCPs). Definitions found were categorized into core themes and subthemes, and the frequency of each theme was determined by stakeholder (patients, family, HCPs) perspectives. Thirty-six studies met eligibility criteria, with 50% of patient perspective articles including individuals over age 60 years. We identified 11 core themes of good death: preferences for a specific dying process, pain-free status, religiosity/spiritualty, emotional well-being, life completion, treatment preferences, dignity, family, quality of life, relationship with HCP, and other. The top three themes across all stakeholder groups were preferences for dying process (94% of reports), pain-free status (81%), and emotional well-being (64%). However, some discrepancies among the respondent groups were noted in the core themes: Family perspectives included life completion (80%), quality of life (70%), dignity (70%), and presence of family (70%) more frequently than did patient perspectives regarding those items (35%-55% each). In contrast, religiosity/spirituality was reported somewhat more often in patient perspectives (65%) than in family perspectives (50%). Taking into account the limitations of the literature, further research is needed on the impact of divergent perspectives on end-of-life care. Dialogues among the stakeholders for each individual must occur to ensure a good death from the most critical viewpoint-the patient’s.

Concepts: Health care provider, Death, Patient, Life, Definition, Qualitative research, Stakeholder, Dialogue

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The United Nations declaration of 2016 as the International Year of Pulses (IYP) provided an unprecedented opportunity to showcase pulses on the global stage for their contribution to affordable nutrition, health, and sustainability. Despite the IYP’s successes in stakeholder engagement, continuing to foster and strengthen partnerships and collaborations is necessary to meet the IYP goals of increased pulse production and consumption for human benefit. Shifting consumer behavior to increase pulse consumption emerged during IYP meetings as a shared priority for all stakeholders. Focusing on this shared priority provides an opportunity to strengthen collaboration among all stakeholder groups for research, education, marketing, and ingredient/food production. Although the IYP officially closed at the end of 2016, the pulse community has an opportunity to continue building successful collaborations. The future research agenda can foster increased pulse production and consumption to address global nutrition, health, and sustainability challenges, provided that it is developed with multisectorial perspectives and cross-disciplinary collaborations. But, most importantly, the research agenda for pulses must be centered more deliberately on the end consumer and how to drive shifts in behavior toward increased pulse consumption, as this is the common shared priority around which all stakeholders can rally.

Concepts: Future, Pulse, United Nations, Collaboration, Stakeholder, Consumer, Consumer debt, Meeting

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Publication bias in animal research, its extent, its predictors, and its potential countermeasures are increasingly discussed. Recent reports and conferences highlight the potential strengths of animal study registries (ASRs) in this regard. Others have warned that prospective registration of animal studies could diminish creativity, add administrative burdens, and complicate intellectual property issues in translational research. A literature review and 21 international key-informant interviews were conducted and thematically analyzed to develop a comprehensive matrix of main- and subcategories for potential ASR-related strengths, weaknesses, facilitators, and barriers (SWFBs). We identified 130 potential SWFBs. All stakeholder groups agreed that ASRs could in various ways improve the quality and refinement of animal studies while allowing their number to be reduced, as well as supporting meta-research on animal studies. However, all stakeholder groups also highlighted the potential for theft of ideas, higher administrative burdens, and reduced creativity and serendipity in animal studies. Much more detailed reasoning was captured in the interviews than is currently found in the literature, providing a comprehensive account of the issues and arguments around ASRs. All stakeholder groups highlighted compelling potential strengths of ASRs. Although substantial weaknesses and implementation barriers were highlighted as well, different governance measures might help to minimize or even eliminate their impact. Such measures might include confidentiality time frames for accessing prospectively registered protocols, harmonized reporting requirements across ASRs, ethics reviews, lab notebooks, and journal submissions. The comprehensive information gathered in this study could help to guide a more evidence-based debate and to design pilot tests for ASRs.

Concepts: Research methods, Medical research, Stakeholder, Intellectual property

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Using a small-scale descriptive network analysis approach, this study highlights the importance of stakeholder networks for identifying valuable stakeholders and the management of existing stakeholders in the context of mental health not-for-profit services. We extract network data from the social media brand pages of three health service organizations from the U.S., U.K., and Australia, to visually map networks of 579 social media brand pages (represented by nodes), connected by 5,600 edges. This network data is analyzed using a collection of popular graph analysis techniques to assess the differences in the way each of the service organizations manage stakeholder networks. We also compare node meta-information against basic topology measures to emphasize the importance of effectively managing relationships with stakeholders who have large external audiences. Implications and future research directions are also discussed.

Concepts: Relationship, Management, Strategic management, Manifold, Graph theory, Graph, Stakeholder, Network topology

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The ability to replace organs and tissues on demand could save or improve millions of lives each year globally and create public health benefits on par with curing cancer. Unmet needs for organ and tissue preservation place enormous logistical limitations on transplantation, regenerative medicine, drug discovery, and a variety of rapidly advancing areas spanning biomedicine. A growing coalition of researchers, clinicians, advocacy organizations, academic institutions, and other stakeholders has assembled to address the unmet need for preservation advances, outlining remaining challenges and identifying areas of underinvestment and untapped opportunities. Meanwhile, recent discoveries provide proofs of principle for breakthroughs in a family of research areas surrounding biopreservation. These developments indicate that a new paradigm, integrating multiple existing preservation approaches and new technologies that have flourished in the past 10 years, could transform preservation research. Capitalizing on these opportunities will require engagement across many research areas and stakeholder groups. A coordinated effort is needed to expedite preservation advances that can transform several areas of medicine and medical science.

Concepts: Health care, Medicine, Health, Research, Skin, Organ transplant, Need, Stakeholder

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The second meeting of the International Collaboration for Automation of Systematic Reviews (ICASR) was held 3-4 October 2016 in Philadelphia, Pennsylvania, USA. ICASR is an interdisciplinary group whose aim is to maximize the use of technology for conducting rapid, accurate, and efficient systematic reviews of scientific evidence. Having automated tools for systematic review should enable more transparent and timely review, maximizing the potential for identifying and translating research findings to practical application. The meeting brought together multiple stakeholder groups including users of summarized research, methodologists who explore production processes and systematic review quality, and technologists such as software developers, statisticians, and vendors. This diversity of participants was intended to ensure effective communication with numerous stakeholders about progress toward automation of systematic reviews and stimulate discussion about potential solutions to identified challenges. The meeting highlighted challenges, both simple and complex, and raised awareness among participants about ongoing efforts by various stakeholders. An outcome of this forum was to identify several short-term projects that participants felt would advance the automation of tasks in the systematic review workflow including (1) fostering better understanding about available tools, (2) developing validated datasets for testing new tools, (3) determining a standard method to facilitate interoperability of tools such as through an application programming interface or API, and (4) establishing criteria to evaluate the quality of tools' output. ICASR 2016 provided a beneficial forum to foster focused discussion about tool development and resources and reconfirm ICASR members' commitment toward systematic reviews' automation.

Concepts: Time, Systematic review, Computer program, Peer review, Application programming interface, Interface, Stakeholder, 2016

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Genome-wide sequencing in a research setting has the potential to reveal health-related information of personal or clinical utility for the study participant. There is increasing pressure to return research findings to participants that may not be related to the project aims, particularly when these could be used to prevent disease. Such secondary, unsolicited or ‘incidental findings’ (IFs) may be discovered unintentionally when interpreting sequence data, or as the result of a deliberate opportunistic screen. This cross-sectional, web-based survey investigated attitudes of 6944 individuals from 75 countries towards returning IFs from genome research. Participants included four relevant stakeholder groups: 4961 members of the public, 533 genetic health professionals, 843 non-genetic health professionals and 607 genomic researchers who were invited via traditional media, social media and professional e-mail list-serve. Treatability and perceived utility of incidental results were deemed important with 98% of stakeholders personally interested in learning about preventable life-threatening conditions. Although there was a generic interest in receiving genomic information, stakeholders did not expect researchers to opportunistically screen for IFs in a research setting. On many items, genetic health professionals had significantly more conservative views compared with other stakeholders. This finding demonstrates a disconnect between the views of those handling the findings of research and those participating in research. Exploring, evaluating and ultimately addressing this disconnect should form a priority for researchers and clinicians alike. This social sciences study offers the largest dataset, published to date, of attitudes towards issues surrounding the return of IFs from sequencing research.European Journal of Human Genetics advance online publication, 29 April 2015; doi:10.1038/ejhg.2015.58.

Concepts: Gene, Genetics, Human Genome Project, Genome, Genomics, Science, Stakeholder, Research and development