There is very little literature on the actual decision-making frameworks used by general practitioners with respect to ethical issues and virtually none on the impact of personal experiences of illness on this. This study aimed to investigate what these frameworks might be and if and how they were altered by doctors’ own illness experience. Twenty general practitioners were recruited, 10 having had a previous serious medical illness and 10 having no such history. They participated in a semi-structured interview, including case (...) vignettes, recorded and analysed using qualitative thematic analysis. Being a patient themselves altered general practitioners’ decision-making by enhancing physician empathy, increasing ease at discussing difficult topics, having a greater willingness to support patient choice and a wider ability to provide a greater diversity of therapeutic strategies, with the role of empathy being the most noticeable difference between the groups. Doctors who had not had a severe personal illnes... (shrink)

The success of business firms and other organizations relies on the trustworthiness of reports and other documents prepared by management accountants. This study examines the personal ethical values and ethical value types of management accountants. Data were obtained from a survey of members of the Institute of Management Accountants (IMA). The survey, composed of the Rokeach Values Survey and demographic questions, was delivered by the IMA Research Lab to membership samples. Importantly, the results indicated that the highest-ranked values were consistent (...) with values included in the IMA’s Statement of Ethical Professional Practice. That management accountants hold high ethical values better enables them to provide reliable and meaningful work to business firms and other organizations. Another important finding is that older management accountants are more concerned with moral values than their younger colleagues. This finding has notable implications for the future of the profession. (shrink)

On August 30, 2013, the American Political Science Association sponsored a roundtable on political epistemology as part of its annual meetings. Co-chairing the roundtable were Jeffrey Friedman, Department of Government, University of Texas at Austin; and Hélène Landemore, Department of Political Science, Yale University. The other participants were Scott Althaus, Department of Political Science, University of Illinois at Urbana-Champaign; Mark Bevir, Department of Political Science, University of California at Berkeley; Rogers Smith, Department of Political Science, University of Pennsylvania; and (...) Susan Stokes, Department of Political Science, Yale University. We thank the participants for permission to republish their remarks, which they subsequently edited for clarity. (shrink)

Ontology is the philosophical discipline which aims to understand how things in the world are divided into categories and how these categories are related together. This is exactly what information scientists aim for in creating structured, automated representations, called 'ontologies,' for managing information in fields such as science, government, industry, and healthcare. Currently, these systems are designed in a variety of different ways, so they cannot share data with one another. They are often idiosyncratically structured, accessible only to those who (...) created them, and unable to serve as inputs for automated reasoning. This volume shows, in a nontechnical way and using examples from medicine and biology, how the rigorous application of theories and insights from philosophical ontology can improve the ontologies upon which information management depends. (shrink)

Children dependent on life-prolonging medical technology are often subject to a constant background risk of sudden death or catastrophic complications. Such children can be cared for in hospital, in an intensive care environment with highly trained nurses and doctors able to deliver specialised, life-saving care immediately. However, remaining in hospital, when life expectancy is limited, can considered to be a harm in of itself. Discharge home offers the possibility for an improved quality of life for the child and their family (...) but comes with significant medical risks.When making decisions for children, two ethical models predominate, the promotion of the child’s best interests or the avoidance of harm. However, in some circumstances, particularly for children with life-limiting and/or life-threatening illness, all options may be associated with risk. There are no good options, only potentially harmful choices.In this paper, we explore decisions made by one family in such circumstances. We describe a model adopted from risk management programmes beyond medicine, which offers a potential framework for identifying risks to the child that are morally permissible. Some risks and harms to a child, not ordinarily permitted, may be acceptable when undertaken in the pursuit of a specified desired good, so long as they are as low as reasonably practicable. (shrink)

The aim of this literature review was to compose a narrative review supported by a systematic approach to critically identify and examine concerns about accountability and the allocation of responsibility and legal liability as applied to the clinician and the technologist as applied the use of opaque AI-powered systems in clinical decision making. This review questions if it is permissible for a clinician to use an opaque AI system in clinical decision making and if a patient was harmed as a (...) result of using a clinician using an AIS’s suggestion, how would responsibility and legal liability be allocated? Literature was systematically searched, retrieved, and reviewed from nine databases, which also included items from three clinical professional regulators, as well as relevant grey literature from governmental and non-governmental organisations. This literature was subjected to inclusion/exclusion criteria; those items found relevant to this review underwent data extraction. This review found that there are multiple concerns about opacity, accountability, responsibility and liability when considering the stakeholders of technologists and clinicians in the creation and use of AIS in clinical decision making. Accountability is challenged when the AIS used is opaque, and allocation of responsibility is somewhat unclear. Legal analysis would help stakeholders to understand their obligations and prepare should an undesirable scenario of patient harm eventuate when AIS were used. (shrink)

It is argued that medical science requires a classificatory system that (a) puts functions in the taxonomic center and (b) does justice ontologically to the difference between the processes which are the realizations of functions and the objects which are their bearers. We propose formulae for constructing such a system and describe some of its benefits. The arguments are general enough to be of interest to all the life sciences.

It is argued that medical science requires a classificatory system that (a) puts functions in the taxonomic center and (b) does justice ontologically to the difference between the processes which are the realizations of functions and the objects which are their bearers. We propose formulae for constructing such a system and describe some of its benefits. The arguments are general enough to be of interest to all the life sciences.

Purpose Cybercrime is a prevalent and serious threat to publicly traded companies. Defending company information systems from cybercrime is one of the most important aspects of technology management. Cybercrime often not only results in stolen assets and lost business but also damages a company’s reputation, which in turn may affect the company’s stock market value. This is a serious concern to company managers, financial analysts, investors and creditors. This paper aims to examine the impact of cybercrime on stock prices of (...) a sample of publicly traded companies. Design/methodology/approach Financial data were gathered on companies that were reported in news stories as victims of cybercrime. The market price of the company’s stock was recorded for several days before the news report and several days after. The percentage change in the stock price was compared to the change in the Dow Jones Industrial average to determine whether the stock price increased or decreased along with the rest of the market. Findings Stock prices were negatively affected in all time periods examined, significantly so in one period. Practical implications This paper describes cases concerning cybercrime, thereby bringing attention to the value of cybersecurity in protecting computers, identity and transactions. Cyber security is necessary to avoid becoming a victim of cybercrime. Specific security improvements and preventive measures are provided within the paper. Preventive measures are generally less costly than repairs after a cybercrime. Originality/value This is an original manuscript that adds to the literature regarding cybercrime and preventive measures. (shrink)

In this text, Georges Didi-Huberman responds, in letter-form, to the critical reflections about his work formulated by Jacques Rancière in “Images Re-read: Georges Didi-Huberman’s Method.” Didi-Huberman disagrees with Rancière’s analysis that images are “passive” and that the words which accompany them are “active.” Instead, he agrees with Merleau-Ponty’s view, which postulates that any analysis of images that seeks to disentangle its elements will render the image unintelligible. In opposition to Rancière’s presentation of his work, Didi-Huberman argues that his method is (...) one of tracing the mutually entangled implications of images. Furthermore, Didi-Huberman challenges Rancière to articulate what exactly “the sensible” means when he uses the phrase “distribution of the sensible.” While Rancière distrusts the reliance on pathos and emotions when it comes to analysing images, Didi-Huberman argues that “the sensible” will always involve the body with all its pathos, emotions and gestures. (shrink)

With the introduction of artificial intelligence (AI) to healthcare, there is also a need for professional guidance to support its use. New (2022) reports from National Health Service AI Lab & Health Education England focus on healthcare workers’ understanding and confidence in AI clinical decision support systems (AI-CDDSs), and are concerned with developing trust in, and the trustworthiness of these systems. While they offer guidance to aid developers and purchasers of such systems, they offer little specific guidance for the clinical (...) users who will be required to use them in patient care.This paper argues that clinical, professional and reputational safety will be risked if this deficit of professional guidance for clinical users of AI-CDDSs is not redressed. We argue it is not enough to develop training for clinical users without first establishing professional guidance regarding the rights and expectations of clinical users.We conclude with a call to action for clinical regulators: to unite to draft guidance for users of AI-CDDS that helps manage clinical, professional and reputational risks. We further suggest that this exercise offers an opportunity to address fundamental issues in the use of AI-CDDSs; regarding, for example, the fair burden of responsibility for outcomes. (shrink)

Medical science conceives the human body as a system comprised of many subsystems at a variety of levels. At the highest level are bodily systems proper, such as the endocrine system, which are central to our understanding of human anatomy, and play a key role in diagnosis and in dynamic modeling as well as in medical pedagogy and computer visualization. But there is no explicit definition of what a bodily system is; such informality is acceptable in documentation created for human (...) beings, but falls short of what is needed for computer representations. Our analysis is intended as a first step towards filling this gap. (shrink)

Artificially intelligent systems (AISs) are being created by software developing companies (SDCs) to influence clinical decision‐making. Historically, clinicians have led healthcare decision‐making, and the introduction of AISs makes SDCs novel actors in the clinical decision‐making space. Although these AISs are intended to influence a clinician's decision‐making, SDCs have been clear that clinicians are in fact the final decision‐makers in clinical care, and that AISs can only inform their decisions. As such, the default position is that clinicians should hold responsibility for (...) the outcomes of the use of AISs. This is not the case when an AIS has influenced a clinician's judgement and their subsequent decision. In this paper, we argue that this is an imbalanced and unjust position, and that careful thought needs to go into how personal moral responsibility for the use of AISs in clinical decision‐making should be attributed. This paper employs and examines the difference between prospective and retrospective responsibility and considers foreseeability as key in determining how personal moral responsibility can be justly attributed. This leads us to the view that moral responsibility for the outcomes of using AISs in healthcare ought to be shared by the clinical users and SDCs. (shrink)

In this text, Jacques Rancière critically discusses the work of Georges Didi-Huberman on images. He disagrees with various claims seemingly made by Didi-Huberman about images, such as that they can “take position” or that they are “active.” Rancière argues that Didi-Huberman adds another form of dialectics to the simpler form of dialectics adopted by Bertolt Brecht and Harun Farocki in their works, namely one that also involves a layering of different temporalities. However, both in Brecht’s War Primer and in Didi-Huberman’s (...) analysis of it, all the potencies credited to images as such are actually potencies of the words that accompany the images. Rancière comes to the conclusion that to “put images in motion,” as Didi-Huberman wants to do, or to regard them as being “active,” he has to put words, his own poetic and extensive writings, in motion. (shrink)

This edited collection explores the problem of violence from the vantage point of meaning. Taking up the ambiguity of the word ‘meaning’, the chapters analyse the manner in which violence affects and in some cases constitutes the meaningful structure of our lifeworld, on individual, social, religious and conceptual levels. The relationship between violence and meaning is multifaceted, and is thus investigated from a variety of different perspectives within the continental tradition of philosophy, including phenomenology, post-structuralism, critical theory and psychoanalysis. Divided (...) into four parts, the volume explores diverging meanings of the concept of violence, as well as transcendent or religious violence- a form of violence that takes place between humanity and the divine world. Going on to investigate instances of immanent and secular violence, which occur at the level of the group, community or society, the book concludes with an exploration of violence and meaning on the individual level: violence at the level of the self, or between particular persons. With its focus on the manifold of relations between violence and meaning, as well as its four part focus on conceptual, transcendent, immanent and individual violence, the book is both multi-directional and multi-layered. (shrink)

Background: Ontologies and taxonomies are among the most important computational resources for molecular biology and bioinformatics. A series of recent papers has shown that the Gene Ontology (GO), the most prominent taxonomic resource in these fields, is marked by flaws of certain characteristic types, which flow from a failure to address basic ontological principles. As yet, no methods have been proposed which would allow ontology curators to pinpoint flawed terms or definitions in ontologies in a systematic way. Results: We present (...) computational methods that automatically identify terms and definitions which are defined in a circular or unintelligible way. We further demonstrate the potential of these methods by applying them to isolate a subset of 6001 problematic GO terms. By automatically aligning GO with other ontologies and taxonomies we were able to propose alternative synonyms and definitions for some of these problematic terms. This allows us to demonstrate that these other resources do not contain definitions superior to those supplied by GO. Conclusion: Our methods provide reliable indications of the quality of terms and definitions in ontologies and taxonomies. Further, they are well suited to assist ontology curators in drawing their attention to those terms that are ill-defined. We have further shown the limitations of ontology mapping and alignment in assisting ontology curators in rectifying problems, thus pointing to the need for manual curation. (shrink)

Animal and human studies suggest that parenting style is transmitted from one generation to the next. The hypotheses of this study were that a mother’s rearing experiences would predict her own parenting resources and current maternal mood, motivation to care for her offspring, and relationship with her parents would underlie this association. In a subsample of 201 first-time mothers participating in the longitudinal Maternal Adversity, Vulnerability and Neurodevelopment project, we assessed a mother’s own childhood maltreatment and rearing experiences using the (...) Childhood Trauma Questionnaire and the Parental Bonding Instrument. At 6 months postpartum, mothers completed questionnaires on parenting stress, symptoms of depression, maternal motivation, and current relationship with their own parents. The sample consisted of mostly high socioeconomic status mothers recruited from Montréal or Hamilton, Canada, with an age range from 18 to 43 years. More severe maltreatment and less supportive rearing by the mother’s parents predicted increased parenting stress at 6 months. These associations were mediated through distinct psychosocial pathways: maltreatment on parenting stress through symptoms of depression ; maternal rearing on parenting stress through maternal motivation and symptoms of depression ; and paternal rearing on parenting stress through current relationship with the father. Maternal rearing experiences predict a mother’s own parenting resources though distinct psychosocial pathways, including depressed mood, maternal motivation, and social support. (shrink)

Animal and human studies suggest that parenting style is transmitted from one generation to the next. The hypotheses of this study were that a mother’s rearing experiences would predict her own parenting resources and current maternal mood, motivation to care for her offspring, and relationship with her parents would underlie this association. In a subsample of 201 first-time mothers participating in the longitudinal Maternal Adversity, Vulnerability and Neurodevelopment project, we assessed a mother’s own childhood maltreatment and rearing experiences using the (...) Childhood Trauma Questionnaire and the Parental Bonding Instrument. At 6 months postpartum, mothers completed questionnaires on parenting stress, symptoms of depression, maternal motivation, and current relationship with their own parents. The sample consisted of mostly high socioeconomic status mothers recruited from Montréal or Hamilton, Canada, with an age range from 18 to 43 years. More severe maltreatment and less supportive rearing by the mother’s parents predicted increased parenting stress at 6 months. These associations were mediated through distinct psychosocial pathways: maltreatment on parenting stress through symptoms of depression ; maternal rearing on parenting stress through maternal motivation and symptoms of depression ; and paternal rearing on parenting stress through current relationship with the father. Maternal rearing experiences predict a mother’s own parenting resources though distinct psychosocial pathways, including depressed mood, maternal motivation, and social support. (shrink)

In this text, Jacques Rancière critically discusses the work of Georges Didi-Huberman on images. He disagrees with various claims seemingly made by Didi-Huberman about images, such as that they can “take position” or that they are “active.” Rancière argues that Didi-Huberman adds another form of dialectics to the simpler form of dialectics adopted by Bertolt Brecht and Harun Farocki in their works, namely one that also involves a layering of different temporalities. However, both in Brecht’s War Primer and in Didi-Huberman’s (...) analysis of it, all the potencies credited to images as such are actually potencies of the words that accompany the images. Rancière comes to the conclusion that to “put images in motion,” as Didi-Huberman wants to do, or to regard them as being “active,” he has to put words, his own poetic and extensive writings, in motion. (shrink)

In this text, Jacques Rancière critically discusses the work of Georges Didi-Huberman on images. He disagrees with various claims seemingly made by Didi-Huberman about images, such as that they can “take position” or that they are “active.” Rancière argues that Didi-Huberman adds another form of dialectics to the simpler form of dialectics adopted by Bertolt Brecht and Harun Farocki in their works, namely one that also involves a layering of different temporalities. However, both in Brecht’s War Primer and in Didi-Huberman’s (...) analysis of it, all the potencies credited to images as such are actually potencies of the words that accompany the images. Rancière comes to the conclusion that to “put images in motion,” as Didi-Huberman wants to do, or to regard them as being “active,” he has to put words, his own poetic and extensive writings, in motion. (shrink)

This introduction to the Common Knowledge symposium titled “Comparative Relativism” outlines a variety of intellectual contexts where placing the unlikely companion terms comparison and relativism in conjunction offers analytical purchase. If comparison, in the most general sense, involves the investigation of discrete contexts in order to elucidate their similarities and differences, then relativism, as a tendency, stance, or working method, usually involves the assumption that contexts exhibit, or may exhibit, radically different, incomparable, or incommensurable traits. Comparative studies are required to (...) treat their objects as alike, at least in some crucial respects; relativism indicates the limits of this practice. Jensen argues that this seeming paradox is productive, as he moves across contexts, from Lévi-Strauss's analysis of comparison as an anthropological method to Peter Galison's history of physics, and on to the anthropological, philosophical, and historical examples offered in symposium contributions by Barbara Herrnstein Smith, Eduardo Viveiros de Castro, Marilyn Strathern, and Isabelle Stengers. Comparative relativism is understood by some to imply that relativism comes in various kinds and that these have multiple uses, functions, and effects, varying widely in different personal, historical, and institutional contexts that can be compared and contrasted. Comparative relativism is taken by others to encourage a “comparison of comparisons,” in order to relativize what different peoples—say, Western academics and Amerindian shamans—compare things “for.” Jensen concludes that what is compared and relativized in this symposium are the methods of comparison and relativization themselves. He ventures that the contributors all hope that treating these terms in juxtaposition may allow for new configurations of inquiry. (shrink)

This paper describes a presentation on ethics for accounting and business students. In 2001 and 2002, major corporate failures such as Enron and Worldcom, combined with questionable accounting practices, made ethics a paramount concern to persons working in business and accounting. While financial statement analysis and regulatory requirements are important technical topics, the issue of ethics provides faculty a unique and very appropriate setting to discuss deeper truths about doing business and living life well. This paper briefly describes the development (...) and assessment of one approach to presenting ethics built around a computerized slide show (PowerPoint). The goal of the presentation is to increase students’ understanding of the essential role of ethics to accounting and business. Following the presentation, students indicated a heightened recognition of the importance of ethics. Educators should do all that they can to encourage students to do the “right” thing, even in difficult circumstances. This encouragement may serve them well in school and later in their careers. (shrink)

This article examines the ways in which Georges Didi-Huberman conceptualizes the notion of the “aura” after Walter Benjamin’s famous and elusive rendering of the term. The central focus is on the way in which Didi-Huberman theorizes the aura to showcase its capacity for transformation – specifically in terms of its connection to “place” and in terms of what he calls a “memory trace.” After an introduction, the article is divided into five sections, followed by a conclusion. The first two sections (...) act as a foundation from which to investigate Didi-Huberman’s engagement with the aura. Therein, I explore the aesthetic debates surrounding what kind of knowledge artworks can produce and specifically how language can, most reductively, objectify the way in which artworks are critiqued, on the one hand, or produce elusive and romantic readings of artworks, on the other. Furthermore, I explore the way in which the notion of aura is engaged in Benjamin’s work upon which Didi-Huberman largely draws for his own understanding of the term. The subsequent two sections outline what I call Didi-Huberman’s two-part proposal of the aura re-imagined; this entails what he calls the “supposition” of the aura and the “secular” aura. Didi-Huberman takes Barnett Newman’s “zip” paintings as a point of entry to think how the aura can be hypothesized after Benjamin. In the final section, I look to the artworks of James Turrell as they are investigated by Didi-Huberman and to one of his short books, Being a Skull, to describe how artworks can function as vertiginous places, which implicate our conception of space in general. Didi-Huberman’s “dialectics of place” both complexifies Benjamin’s equating of place with the aura as uniqueness and smooths over some edges of his paradoxical thinking. (shrink)

Precision targeting of specific white matter bundles that traverse the subcallosal cingulate has been linked to efficacy of deep brain stimulation for treatment resistant depression. Methods to confirm optimal target engagement in this heterogenous region are now critical to establish an objective treatment protocol. As yet unexamined are the time-frequency features of the SCC evoked potential, including spectral power and phase-clustering. We examined these spectral features—evoked power and phase clustering—in a sample of TRD patients with implanted SCC stimulators. Electroencephalogram was (...) recorded during wakeful rest. Location of electrical stimulation in the SCC target region was the experimental manipulation. EEG was analyzed at the surface level with an average reference for a cluster of frontal sensors and at a time window identified by prior study. Morlet wavelets generated indices of evoked power and inter-trial phase clustering. Enhanced phase clustering at theta frequency was observed in every subject and was significantly correlated with SCC-EP magnitude, but only during left SCC stimulation. Stimulation to dorsal SCC evinced stronger phase clustering than ventral SCC. There was a weak correlation between phase clustering and white matter density. An increase in evoked delta power was also coincident with SCC-EP, but was less consistent across participants. DBS evoked time-frequency features index mm-scale changes to the location of stimulation in the SCC target region and correlate with structural characteristics implicated in treatment optimization. Results also imply a shared generative mechanism between evoked potentials evinced by electrical stimulation and evoked potentials evinced by auditory/visual stimuli and behavioral tasks. Understanding how current injection impacts downstream cortical activity is essential to building new technologies that adapt treatment parameters to individual differences in neurophysiology. (shrink)

There are differences in caregivers’ literacy and health literacy levels that may affect their ability to consent to children participating in clinical research trials. This study aimed to explore the effectiveness, and caregivers’ understandings, of the process of informed consent that accompanied their child’s participation in a dental randomized control trial (RCT). Telephone interviews were conducted with a convenience sample of ten caregivers who each had a child participating in the RCT. Pre-tested closed and open-ended questions were used, and the (...) findings were produced from an inductive analysis of the latter and a descriptive analysis of the former. Participants had limited understanding of the purpose of the RCT and rated the readability of the consent form more highly than they rated their understanding of the research. All felt that informed consent was vital, but some caregivers had not read the consent documents. Some caregivers enrolled their child in the RCT because they trusted the researchers, and the majority wanted to improve dental care for children. The informed consent process was not always effective despite high readability of the informed consent documents. Researchers must consider the health literacy of the study group, and actively engaging with caregivers to achieve meaningful informed consent may be challenging. Future research could explore participants’ perspectives of informed consent in populations with low health literacy and assess whether an underlying expectation not to comprehend health-related information may be a barrier to informed consent. (shrink)

Arthur Danto has written:I came to view that in writing about beauty as a philosopher, I was addressing the deepest kind of issue there is. Beauty is but one of an immense range of aesthetic qualities, and philosophical aesthetics has been paralyzed by focusing as narrowly on beauty as it has. But beauty is the only one of the aesthetic qualities that is also a virtue, like truth and goodness. It is not simply among the values we live by, but (...) one of the values that defines what a fully human life means.1Because beauty is so important to being human, it is worthwhile to study how people understand their experiences of beauty across the lifespan. How do children frame what beauty is? How do adolescents? How do... (shrink)

The Ontology for Biomedical Investigations (OBI) is an ontology that provides terms with precisely defined meanings to describe all aspects of how investigations in the biological and medical domains are conducted. OBI re-uses ontologies that provide a representation of biomedical knowledge from the Open Biological and Biomedical Ontologies (OBO) project and adds the ability to describe how this knowledge was derived. We here describe the state of OBI and several applications that are using it, such as adding semantic expressivity to (...) existing databases, building data entry forms, and enabling interoperability between knowledge resources. OBI covers all phases of the investigation process, such as planning, execution and reporting. It represents information and material entities that participate in these processes, as well as roles and functions. Prior to OBI, it was not possible to use a single internally consistent resource that could be applied to multiple types of experiments for these applications. OBI has made this possible by creating terms for entities involved in biological and medical investigations and by importing parts of other biomedical ontologies such as GO, Chemical Entities of Biological Interest (ChEBI) and Phenotype Attribute and Trait Ontology (PATO) without altering their meaning. OBI is being used in a wide range of projects covering genomics, multi-omics, immunology, and catalogs of services. OBI has also spawned other ontologies (Information Artifact Ontology) and methods for importing parts of ontologies (Minimum information to reference an external ontology term (MIREOT)). The OBI project is an open cross-disciplinary collaborative effort, encompassing multiple research communities from around the globe. To date, OBI has created 2366 classes and 40 relations along with textual and formal definitions. The OBI Consortium maintains a web resource providing details on the people, policies, and issues being addressed in association with OBI. (shrink)

The aim of this workshop was to ask potential end-users of the citizens’ information pack on legal and ethical issues around ICTs the following questions: What is your knowledge of the EU’s General Data Protection Regulation, and what actions have you taken in response to these regulations? What challenges are you experiencing in ensuring the protection and security of your project data, and compliance with the GDPR, within existing data management processes/systems? What information/tools/resources do you need to overcome these challenges? (...) What are the best formats/channels for receiving, sharing and acting upon this information? What is the most appropriate structure/format for the citizens’ information pack? (shrink)

BackgroundFear of cancer recurrence is common amongst cancer survivors. There is rapidly growing research interest in FCR but a need to prioritize research to address the most pressing clinical issues and reduce duplication and fragmentation of effort. This study aimed to establish international consensus among clinical and academic FCR experts regarding priorities for FCR research.MethodsMembers of the International Psycho-oncology Society Fear of Cancer Recurrence Special Interest Group were invited to participate in an online Delphi study. Research domains identified in Round (...) 1 were presented and discussed at a focus group to consolidate the domains and items prior to presentation in further survey rounds aimed at gaining consensus on research priorities of international significance.ResultsThirty four research items were identified in Round 1 and 33 of the items were consolidated into six overarching themes through a focus group discussion with FCR experts. The 33 research items were presented in subsequent rounds of the delphi technique. Twenty one participants contributed to delphi round 1, 16 in round 2, and 25 and 29 participants for subsequent delphi rounds. Consensus was reached for 27 items in round 3.1. A further four research items were identified by panelists and included in round 3.2. After round 3.2, 35 individual research items were ratified by the panelists. Given the high levels of consensus and stability between rounds, no further rounds were conducted. Overall intervention research was considered the most important focus for FCR research. Panelists identified models of care that facilitate greater access to FCR treatment and evaluation of the effectiveness of FCR interventions in real world settings as the two research items of highest priority. Defining the mechanisms of action and active components across FCR/P interventions was the third highest priority identified.ConclusionThe findings of this study outline a research agenda for international FCR research. Intervention research to identify models of care that increase access to treatment are based on a flexible approach based on symptom severity and can be delivered within routine clinical care were identified as research areas to prioritize. Greater understanding of the active components and mechanisms of action of existing FCR interventions will facilitate increased tailoring of interventions to meet patient need. (shrink)

ICTs, personal data, digital rights, the GDPR, data privacy, online security… these terms, and the concepts behind them, are increasingly common in our lives. Some of us may be familiar with them, but others are less aware of the growing role of ICTs and data in our lives - and the potential risks this creates. These risks are even more pronounced for vulnerable groups in society. People can be vulnerable in different, often overlapping, ways, which place them at a disadvantage (...) to the majority of citizens; Table 3 in this guide presents some of the many forms and causes of vulnerability. As a result, vulnerable people need greater support to navigate the digital world, and to ensure that they are able to exercise their rights. This guide explains where such support can be found, and also answers the following questions: - What are the main ethical and legal issues around ICTs for vulnerable citizens? - Who is vulnerable in Europe? - How do issues around ICTs affect vulnerable people in particular? This guide is a resource for members of vulnerable groups, people who work with vulnerable groups, and citizens more broadly. It is also useful for data controllers1 who collect data about vulnerable citizens. While focused on citizens in Europe, it may be of interest to people in other parts of the world. It forms part of the Citizens’ Information Pack produced by the PANELFIT project, and is available in English, French, German, Italian and Spanish. You are welcome to translate this guide into other languages. Please send us a link to online versions in other languages, so that we can add them to the project website. (shrink)