61 research outputs found
Scholarly Communication Librarianship and Open Knowledge
The intersection of scholarly communication librarianship and open education offers a unique opportunity to expand knowledge of scholarly communication topics in both education and practice. Open resources can address the gap in teaching timely and critical scholarly communication topics—copyright in teaching and research environments, academic publishing, emerging modes of scholarship, impact measurement—while increasing access to resources and equitable participation in education and scholarly communication.
Scholarly Communication Librarianship and Open Knowledge is an open textbook and practitioner’s guide that collects theory, practice, and case studies from nearly 80 experts in scholarly communication and open education. Divided into three parts:
*What is Scholarly Communication?
*Scholarly Communication and Open Culture
*Voices from the Field: Perspectives, Intersections, and Case Studies
The book delves into the economic, social, policy, and legal aspects of scholarly communication as well as open access, open data, open education, and open science and infrastructure. Practitioners provide insight into the relationship between university presses and academic libraries, defining collection development as operational scholarly communication, and promotion and tenure and the challenge for open access.
Scholarly Communication Librarianship and Open Knowledge is a thorough guide meant to increase instruction on scholarly communication and open education issues and practices so library workers can continue to meet the changing needs of students and faculty. It is also a political statement about the future to which we aspire and a challenge to the industrial, commercial, capitalistic tendencies encroaching on higher education. Students, readers, educators, and adaptors of this resource can find and embrace these themes throughout the text and embody them in their work
Redefiniendo el consentimiento informado en investigación biomédica
Esta tesis se enmarca en el proyecto europeo i-CONSENT (H2020, GA 741856) y se enfoca en el consentimiento informado (CI) en el contexto de la investigación biomédica. Su objetivo principal es analizar la problemática actual del CI y proponer recomendaciones que mejoren su comprensibilidad y adaptabilidad a las necesidades y preferencias de la población objetivo. La tesis consta de 6 artículos que abarcan diversas actividades llevadas a cabo durante los casi 4 años de duración del proyecto, brindándonos una visión integral de su evolución y proporcionando una idea de la experiencia de participar en él. Además, la tesis incluye una sección dedicada a las principales vivencias y aprendizajes como coordinador técnico del proyecto. Desde una perspectiva académica, los artículos abordan distintos aspectos relacionados con el CI en investigación, combinando metodologías teóricas, como la revisión sistemática de la literatura y los textos legales, con metodologías participativas que dan voz a las principales partes interesadas, como grupos nominales o design thinking. Esta combinación de enfoques permite recopilar información relevante que facilita una mejor comprensión de las complejidades y desafíos asociados con el CI. Dentro de la tesis, se examinan diversos aspectos, como la percepción de los potenciales participantes sobre la comprensión del CI, las expectativas de participación de los pacientes, el asentimiento en menores y las perspectivas de género. También se analiza el contenido del asentimiento informado desde diferentes perspectivas, incluyendo la legislación y la literatura científica, con el objetivo de comprender las diferencias en la percepción de legisladores, investigadores, padres y menores. Otro tema abordado es el uso e impacto de las herramientas digitales en el CI. Además, se proporciona una visión general del proyecto y se presentan guías con recomendaciones para mejorar el CI, destacando los factores clave identificados durante la investigación. Se evalúa la idoneidad de las recomendaciones a través de la opinión de expertos representativos de las distintas partes interesadas, y se muestra la implementación práctica de las guías para la elaboración de materiales de asentimiento. En resumen, la tesis ofrece un análisis exhaustivo del CI en investigación, abordando aspectos específicos y enfatizando la importancia de la inclusión, al mismo tiempo que presenta recomendaciones para mejorar el proceso del CI.This PhD thesis is part of the European i-CONSENT project (H2020, GA 741856) and focuses on informed consent (IC) in the context of biomedical research. Its main objective is to analyse the current problems of IC and propose recommendations to improve its comprehensibility and adaptability to the needs and preferences of the target population.
The thesis consists of 6 articles covering various activities carried out during the almost 4 years of the project, giving us a comprehensive view of its evolution and providing an insight into the experience of participating in it. In addition, the thesis includes a section dedicated to the main experiences and lessons learned as technical coordinator of the project.
From an academic perspective, the articles address different aspects related to CI in research, combining theoretical methodologies, such as the systematic review of literature and legal texts, with participatory methodologies that give voice to the main stakeholders, such as focus groups or design thinking. This combination of approaches allows for the collection of relevant information that facilitates a better understanding of the complexities and challenges associated with IC.
Within the thesis, various aspects are examined, such as potential participants' perceptions of understanding IC, patients' expectations of participation, assent in minors and gender perspectives. The content of informed consent is also analysed from different perspectives, including legislation and scientific literature, with the aim of understanding the differences in the perceptions of legislators, researchers, parents and minors. Another topic addressed is the use and impact of digital tools in IC. In addition, an overview of the project is provided and guidelines with recommendations for improving IC are presented, highlighting the key factors identified during the research. The appropriateness of the recommendations is assessed through the opinion of experts representing different stakeholders, and the practical implementation of the guidelines for the development of assent materials is shown.
In summary, the research thesis provides a comprehensive analysis of IC in research, addressing specific aspects and emphasising the importance of inclusiveness, while presenting recommendations for improving the IC process
Diabetic patient experiences of public and government messaging and help-seeking during the COVID-19 pandemic
Research indicates that the COVID-19 pandemic has had far-reaching consequences on the global population, impacting on both mental and physical health. Despite the increased risk of severe illness and death from COVID-19, there is a paucity of research exploring the experiences of individuals with underlying health conditions during the pandemic, particularly in relation to government messaging and its impact on help-seeking behaviours. This thesis seeks to address these gaps by focusing on the experiences of people living with Type 2 diabetes during the COVID-19 pandemic in the UK.
Informed by a critical realist epistemology, this qualitative study employs semistructured interviews with 13 participants to explore how government and public health messaging was experienced and the resultant impact on help-seeking behaviours. Thematic analysis revealed three main themes: 'Diabetes Identity,' 'Becoming [In]visible' and 'Going it Alone.'
Participants reported experiences of stigmatisation and feelings of shame as a consequence of messaging, along with the psychological impact of losing both social and healthcare support. They also described challenges in grappling with being positioned as 'vulnerable' and the poor differentiation with the use of this label, as well as issues around self-disclosure and a renegotiation of their relationship with their diabetes.
Recommendations for further research and improvements to government policy and guidelines are provided to better address the importance of considering the unique experiences and challenges faced by individuals with pre-existing health conditions, as well as the need for more inclusive and sensitive public health messaging to minimise stigmatisation and promote help-seeking behaviours
CLARIN
The book provides a comprehensive overview of the Common Language Resources and Technology Infrastructure – CLARIN – for the humanities. It covers a broad range of CLARIN language resources and services, its underlying technological infrastructure, the achievements of national consortia, and challenges that CLARIN will tackle in the future. The book is published 10 years after establishing CLARIN as an Europ. Research Infrastructure Consortium
“I need friends for my autism... but I don't know why": An exploration of autistic children's friendship experiences
Autistic children can experience challenges in making and maintaining friendships, and middle childhood (ages 6-12) may be a particularly challenging time for children, as social networks become more complex. However, a large proportion of research into these experiences is based on adult reports, observations, or focuses on the experiences of adolescents and adults, meaning that the voices of younger children are absent from the literature.
This doctoral project aims to fill this gap by directly investigating the experiences of autistic children in the United Kingdom. The project involves three studies which explore friendship experiences from multiple perspectives to gain a deeper understanding of this phenomenon. These studies include a systematic review exploring the experiences of autistic children across primary settings in the UK; a multiple perspectives study including autistic children in Key Stage 2 and their key adults which uses novel, creative methods and remote, parent-led interviews; and a parental perspectives study investigating the impact COVID-19 and school transitions have on children’s friendships.
Results from the studies show that autistic children can and do have successful friendships, but that these friendships may differ from those of non-autistic peers. Autistic children were found to show a preference for children that had similar needs to themselves, and clear gender and age differences were identified, with girls reporting more pressure to make friends and conform to social norms. Importantly, the studies highlighted that there were key differences between the experiences of autistic children and the perceptions of key adults in their lives. This has implications for the design of support and highlights the need to speak with children about areas that concern themselves. The project also highlights the lack of research including children directly and calls for more inclusive methods to be implemented to combat this
Bibliographic Control in the Digital Ecosystem
With the contributions of international experts, the book aims to explore the new boundaries of universal bibliographic control. Bibliographic control is radically changing because the bibliographic universe is radically changing: resources, agents, technologies, standards and practices. Among the main topics addressed: library cooperation networks; legal deposit; national bibliographies; new tools and standards (IFLA LRM, RDA, BIBFRAME); authority control and new alliances (Wikidata, Wikibase, Identifiers); new ways of indexing resources (artificial intelligence); institutional repositories; new book supply chain; “discoverability” in the IIIF digital ecosystem; role of thesauri and ontologies in the digital ecosystem; bibliographic control and search engines
Coronavirus disease (Covid-19): psychoeducational variables involved in the health emergency
This monograph has allowed us to present a psychoeducational view of the effects
of the COVID-19 pandemic. We confirm here that research in education contributes its
own evidence and specific models for identifying this problem
The Proceedings of the 23rd Annual International Conference on Digital Government Research (DGO2022) Intelligent Technologies, Governments and Citizens June 15-17, 2022
The 23rd Annual International Conference on Digital Government Research theme is “Intelligent Technologies, Governments and Citizens”. Data and computational algorithms make systems smarter, but should result in smarter government and citizens. Intelligence and smartness affect all kinds of public values - such as fairness, inclusion, equity, transparency, privacy, security, trust, etc., and is not well-understood. These technologies provide immense opportunities and should be used in the light of public values. Society and technology co-evolve and we are looking for new ways to balance between them. Specifically, the conference aims to advance research and practice in this field.
The keynotes, presentations, posters and workshops show that the conference theme is very well-chosen and more actual than ever. The challenges posed by new technology have underscored the need to grasp the potential. Digital government brings into focus the realization of public values to improve our society at all levels of government. The conference again shows the importance of the digital government society, which brings together scholars in this field. Dg.o 2022 is fully online and enables to connect to scholars and practitioners around the globe and facilitate global conversations and exchanges via the use of digital technologies. This conference is primarily a live conference for full engagement, keynotes, presentations of research papers, workshops, panels and posters and provides engaging exchange throughout the entire duration of the conference
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