Книги з теми "Data sharing approach"

In addition to sharing clinical, histopathological, and immunological features, spondyloarthritis (SpA) encompasses a group of diseases that are genetically linked through shared associations with HLA-B27, as well as other genes of the IL-23R and aminopeptidase groups. Great progress has been made since the development of the genome-wide association study approach, with better dissection of the HLA associations of this group of diseases, as well as the discovery of multiple genetic loci found outside of the major histocompatibility complex, in ankylosing spondylitis (AS) in particular. These genetic data shed light on the related pathogenesis of AS and psoriatic arthritis (PsA), inflammatory bowel disease (IBD)-related arthritis, and reactive arthritis (ReA). Genetic associations also strengthen the suggestive data that Behçet’s disease (BD) and Familial Mediterranean Fever (FMF) are related to the more classical forms of SpA.

This bookanalyzes diverse representations of environmental moral engagement in contemporary mediated popular culture. It identifies and explores intertwining, co-constitutive, yet contrary stories of what the author terms “ecopiety” and “consumopiety” as they flow across multiple media platforms. The way these stories compete and conflict, vying for space as contested narratives in the public imagination, constitutes a central inquiry of the book. Drawing together theoretical insights from cultural studies, media studies, environmental humanities, and religious studies, the book offers a critical reading of primary source data drawn from such areas as the marketing of green consumer products, “greenwashed” corporate advertising, environmental mobile device applications, eco-themed reality television, the marketing of eco-funerals, Internet sharing of environmental tattoos, “green” fashion guides, and the media strategies of green hiphop activism. Taylor makes the case that a detailed, multichannel, cross-platform approach to cultural analysis is critical to understanding the kind of important “work” taking place as mediated popular culture plays an integral role in the “greening” of American moral sensibilities. Ecopiety delves into the complex and contested processes of remaking our world and rescripting the future in the digital age—a time when storytelling processes themselves are shaping and being shaped by new media outlets and digital sharing technologies.

The final chapter identifies some critical lessons learned during an eight-year project. Many in the team had worked on large grants and/or on ethnographic studies. Developing a new version of ethnography, however, required creative teamwork. So did moving beyond narrower forms of interdisciplinary and international research and more traditional approaches to mentoring in order to ensure collective, consultative, reflexive, as well as continuous knowledge creation and sharing. This chapter argues that such creative team work depends on building relationships and on organizing meetings that are stimulating intellectually and move the research forward. Those meetings must also be fun. Creative team work also requires significant preparation for the site visits, especially when those visits are intense and involved highly vulnerable populations. It means mentoring through sharing the entire research process in egalitarian ways. Finally, it means thinking about what happens to the team and the data after the funding ends.

This chapter provides an overview of the ethics of scientific research. Topics covered include: a review of significant historical events, trends, and cases pertaining to scientific ethics; a discussion of the philosophical foundations of science’s ethical norms; a description of science’s ethical norms; and an examination of some common ethical dilemmas that arise in such areas of research as reporting and investigating misconduct, sharing data and materials, assignment of authorship and credit, management of conflict of interest, peer review of publications, research with human beings and animals, and social responsibility. The chapter also discusses conflicts among ethical norms; empirical versus conceptual approaches to studying ethical norms; international variations in research practices; and institutional and government efforts to promote integrity in research.

This remarkable work reveals the plight of the family caregiver in chronic illness through the prism of communication. Examining the high cost and poorly addressed exigencies of the caregiver, including health literacy, palliative care, and health outcomes, Elaine Wittenberg, Joy V. Goldsmith, Sandra L. Ragan, and Terri Ann Parnell use an interdisciplinary approach in an effort to identify the impact of communication and its burdens on the caregiver. This team of scholars present four caregiver profiles, the Manager, Carrier, Partner, and Lone caregiver, each emerging from a family system with different patterns of conversational sharing and expectations of conformity. This volume presents a picture of the costs and losses for caregivers that go unseen and remain invisible for stakeholders in the healthcare experience. By synthesizing current data assessing the experiences of caregivers, as well as integrating the narrative experiences of a range of caregivers living through a variety of illnesses and their specific demands, the writers deliver an unflinching gaze at the journey of the caregiver. With an author team comprised of three health communication researchers and a nurse and health literacy expert, this volume integrates literature addressing caregiver needs and burdens, communication theory and practice, and palliative care and health literacy research to present the groundbreaking concept of the caregiver types and an innovative set of support resources to facilitate improved pathways to better care for the caregiver. Their engaging and rigorous writing style integrates the real stories of caregivers across the scope of the book connecting the reader with the people inside the pages and making the book essential for providers, students, clinicians, policymakers, and family caregivers alike.

Fraud and misconduct are firstly introduced by clearly defining the meaning of the two words along with what constitutes good data quality and data integrity. Falsification, Fabrication and Plagiarism are discussed. The concept of how regulators view high quality data is described along with the consequences of falsification. The chapter then goes on to present multiple definitions of fraud and misconduct to show similarities and differences between regulatory authorities in the UK and US as compared to other organisations such as the Royal College of Physicians, the Medical Research Council Policy and UK Research Integrity office. Additionally, five landmark and historical cases are presented to demonstrate what constitutes fraud. The General Medical Counsel's role in protecting public safety by ensuring proper medical standards is described along with the UK Research Integrity Office (UKRIO) and the EU Competent Authority roles in conducting investigations of suspected fraud and misconduct cases. The important roles of whistleblowers are described as well as COPE's role in reviewing published medical journal's research. Practical examples are provided to be used for the detection of fraud as well as specific approaches used by the pharmaceutical industry to detect fraudulent data. In the US, databases are available to conduct searches for individuals who have committed fraud such as the Office of Research Integrity (ORI) and the PHS Administration Action Bulletin Board. Additionally, the process for how fraud and misconduct cases are handled in the UK are discussed along with the options available for regulators, such as the MHRA, on sharing information with the public.

This study aims to present the plurality of the teacher’s perception, which emerges from the actions taken to minimize the difficulties that come up in remote education. Its relevance is found in the actions and reactions of those involved, and make up possibilities for generating public policies that motivate and foster quality education. The following research question guided this work: What lessons could be learned by those involved in their teaching practice after schools reopen? An exploratory research was carried out, by choosing the methodological approach of qualitative research. Data collection was performed using an online questionnaire, directed to teachers who worked in the classroom and started working in remote education. Sharing knowledge is complex and demands a variety of actions, interventions, processes that, however sophisticated the technology used, it certainly does not allow to develop all the strategies that the teacher uses in the classroom. Technologies help with physical distance. But we believe the exchange that happens naturally between teacher and student, and between student and student, exists only when everyone is in the same physical environment, under the same physical and human conditions, especially in basic education. The lessons learned: (i) improve our training or post-training with the introduction of disciplines related to digital and technological means; (ii) understand that remote education is a possibility to be applied in our teaching practice; (iii) include viable teaching, learning and assessment alternatives in the Political Pedagogical Project; (iv) at parent-teacher conferences or class meetings, seek to collect all possible observations, both positive and negative. We need to considerate new routes, minimize the questions that arise during practice, in order to adapt to the new technological strategies of the art of teaching.

The Region of the Americas has prioritized the achievement of health equity—“the absence of avoidable or remediable differences among groups of people, whether these groups are defined socially, economically, demographically or geographically” (WHO)—both through regional agreements, such as the Sustainable Health Agenda for the Americas (2017), and by reporting progress toward the 2030 Agenda for Sustainable Development (the Sustainable Development Goals) (2015). Public sector policy is the principal initial lever through which both national and local governments institute and finance actions toward accelerating the achievement of equity in health. This study assessed 32 national health plans to report on whether and how countries in the Region are integrating the achievement of health equity into strategic lines of action in the health sector. It provides a snapshot of approaches and advances, allowing for knowledge sharing among countries on options for attention to equity in health policy. It will also facilitate future monitoring of trends in the integration of health equity aims and approaches in policies. The study found that stated overall commitments to health equity are common, as are commitments toward the disaggregation of data and monitoring of inequalities, while other elements of health equity like, for example, the identification of populations in situations of vulnerability, receive less attention. While further study is needed on the implementation and impacts of approaches in specific programmatic actions, the study provides useful insights to inform efforts for a stronger framework for health equity action toward the Region’s goals for 2030.

Participatory Action Research (PAR) models are increasingly used in disciplines such as social sciences and health to actively engage people with lived experiences as co-researchers and act on findings to improve their lives. In recent years, the potential of PAR to yield meaningful benefits via collaborative research activities with people who are multiply marginalized and excluded from dominant forms of knowledge production has gained more recognition. This rise in popularity calls for in-depth discussions about contemporary methodological issues and taken-for-granted principles that can yield tokenistic outcomes and ethical dilemmas. What do genuine participation and research co-production look like when co-researchers are actively involved in data collection, analysis, and sharing? How do we address ethical issues when projects and relationships become problematic and messy? In addition to answering these questions, this book repositions PAR as an intersectional decolonial methodology and an effective tool to disrupt harmful western or Eurocentric research frameworks in favor of approaches such as Indigenous PAR. It outlines how intersectional feminist principles enrich PAR and honor diverse gender expressions to address enduring inequalities rather than reinforce colonial, elitist, and transphobic notions of feminism. The discussion on influencing policymaking using PAR findings points to the importance of effective knowledge translation plans and intersectional feminist policy analysis frameworks. Using reflexive vignettes from diverse participatory researchers, this book provides practical and conceptual insights into the politics of PAR and its potential to yield new possibilities for individual, community, and policy change when participatory approaches are used in collaborative and ethical ways.

Community abuse of prescription medication is typically limited to overuse or inappropriate sharing of medication. In jails and prisons, the demand characteristics are dramatically altered, creating an elaborate laboratory for medication alteration, diversion, and abuse. While prescription medications are sometimes used to achieve a ‘high,’ they may also be sought to ease discomforts commonly experienced in a jail or prison. Some may seek stimulating medications to counteract the effects of prescribed sedatives to allow them to be ready to respond to real or perceived dangers. Thus, inmates may feign or exaggerate mood, anxiety, psychotic, or somatic symptoms with the goal of being prescribed medications with the desired effects. More insidious is the diversion of prescribed medications to a third party. Many prescribed medicines have a ‘street value’ in correctional settings. A patient with a legitimate need for medication, who may already have poor illness insight, may be enticed or coerced into transferring their medication to a peer. This creates several dangerous problems. The source inmate may worsen or fail to improve, which may lead to dose escalation, an incorrect conclusion about a treatment failure, poor functioning, and behavioral sequelae including disruptive or violent conduct. Meanwhile, the recipient is exposed to medication risks without the benefits of informed consent or medical supervision. This chapter presents data on specific classes of prescribed medication abuses, methods of abuse, and approaches to minimize abuse or diversion of prescribed medications.

These Guidelines are one of the results of the four-year research project “Open Online Learning for Digital and Networked Society” (2017-2021). The project objective was to enable university teachers to design open and online learning through open and online learning curriculum and environment applying learning analytics as a metacognitive tool and creating open and online learning assessment and recognition practices, responding to the needs of digital and networked society. The research of the project resulted in 10 scientific publications and 2 studies prepared by Vytautas Magnus university Institute of Innovative Studies research team in collaboration with their international research partners from Germany, Spain and Portugal. The final stage of the research attempted creating open and online learning assessment and recognition practices, responding to the learner needs in contemporary digital and networked society. The need for open learning recognition has been increasing during the recent decade while the developments of open learning related to the Covid 19 pandemics have dramatically increased the need for systematic and high-quality assessment and recognition of learning acquired online. The given time also relates to the increased need to offer micro-credentials to learners, as well as a rising need for universities to prepare for micro-credentialization and issue new digital credentials to learners who are regular students, as well as adult learners joining for single courses. The increased need of all labour - market participants for frequent and fast renewal of competences requires a well working and easy to use system of open learning assessment and recognition. For learners, it is critical that the micro-credentials are well linked to national and European qualification frameworks, as well as European digital credential infrastructures (e.g., Europass and similar). For employers, it is important to receive requested quality information that is encrypted in the metadata of the credential. While for universities, there is the need to properly prepare institutional digital infrastructure, organizational procedures, descriptions of open learning opportunities and virtual learning environments to share, import and export the meta-data easily and seamlessly through European Digital Hub service infrastructures, as well as ensure that academic and administrative staff has digital competencies to design, issue and recognise open learning through digital and micro-credentials. The first chapter of the Guidelines provides a background view of the European Qualification Framework and National Qualification frameworks for the further system of gaining, stacking and modelling further qualifications through open online learning. The second chapter suggests the review of current European policy papers and consultations on the establishment of micro-credentials in European higher education. The findings of the report of micro-credentials higher education consultation group “European Approach to Micro-credentials” is shortly introduced, as well as important policy discussions taking place. Responding to the Rome Bologna Comunique 2020, where the ministers responsible for higher education agreed to support lifelong learning through issuing micro-credentials, a joint endeavour of DG Employment, Social Affairs and Inclusion and DG Research and Innovation resulted in one of the most important political documents highlighting the potential of micro-credentials towards economic, social and education innovations. The consultation group of experts from the Member States defined the approach to micro-credentials to facilitate their validation, recognition and portability, as well as to foster a larger uptake to support individual learning in any subject area and at any stage of life or career. The Consultation Group also suggested further urgent topics to be discussed, including the storage, data exchange, portability, and data standards of micro-credentials and proposed EU Standard of constitutive elements of micro-credentials. The third chapter is devoted to the institutional readiness to issue and to recognize digital and micro-credentials. Universities need strategic decisions and procedures ready to be enacted for assessment of open learning and issuing micro-credentials. The administrative and academic staff needs to be aware and confident to follow these procedures while keeping the quality assurance procedures in place, as well. The process needs to include increasing teacher awareness in the processes of open learning assessment and the role of micro-credentials for the competitiveness of lifelong learners in general. When the strategic documents and procedures to assess open learning are in place and the staff is ready and well aware of the processes, the description of the courses and the virtual learning environment needs to be prepared to provide the necessary metadata for the assessment of open learning and issuing of micro-credentials. Different innovation-driven projects offer solutions: OEPass developed a pilot Learning Passport, based on European Diploma Supplement, MicroHE developed a portal Credentify for displaying, verifying and sharing micro-credential data. Credentify platform is using Blockchain technology and is developed to comply with European Qualifications Framework. Institutions, willing to join Credentify platform, should make strategic discussions to apply micro-credential metadata standards. The ECCOE project building on outcomes of OEPass and MicroHE offers an all-encompassing set of quality descriptors for credentials and the descriptions of learning opportunities in higher education. The third chapter also describes the requirements for university structures to interact with the Europass digital credentials infrastructure. In 2020, European Commission launched a new Europass platform with Digital Credential Infrastructure in place. Higher education institutions issuing micro-credentials linked to Europass digital credentials infrastructure may offer added value for the learners and can increase reliability and fraud-resistant information for the employers. However, before using Europass Digital Credentials, universities should fulfil the necessary preconditions that include obtaining a qualified electronic seal, installing additional software and preparing the necessary data templates. Moreover, the virtual learning environment needs to be prepared to export learning outcomes to a digital credential, maintaining and securing learner authentication. Open learning opportunity descriptions also need to be adjusted to transfer and match information for the credential meta-data. The Fourth chapter illustrates how digital badges as a type of micro-credentials in open online learning assessment may be used in higher education to create added value for the learners and employers. An adequately provided metadata allows using digital badges as a valuable tool for recognition in all learning settings, including formal, non-formal and informal.