PurposeThe purpose of this paper is to investigate how people communicate in organisations.Design/methodology/approachThe approach in doing this is based on two pillars. One being a philosophical phenomenological approach dealing mainly ethical questions concerning communication and interaction in designing and implementing electronic health records. The other is videoobservation of work procedures in hospitals because appropriate for unveiling tacit knowledge in an organisation.FindingsThe paper discusses the inappropriate design and implementation of actual EHR's in the Danish hospital system. Where the technology (...) is based on hierarchical and economic structured managerialist thinking and doing, that eliminates the everyday knowledge of nursing staff and the patient.Originality/valueThe value of this paper that it lays forward the inappropriate paradigmatic thinking of hospital systems concerning communication and interaction in designing and implementing EHRs. (shrink)

BackgroundThe landscape of clinical research has evolved over the past decade. With technological advances, the practice of using electronic informed consent (eIC) has emerged. However, a number of challenges hinder the successful and widespread deployment of eIC in clinical research. Therefore, we aimed to investigate the views of various stakeholders on the potential advantages and challenges of eIC.MethodsSemi-structured interviews were conducted with 39 participants from 5 stakeholder groups from across 11 European countries. The stakeholder groups included physicians, (...) patient organization representatives, regulator representatives, ethics committee members, and pharmaceutical industry representatives, and all were involved in clinical research. Interviews were analyzed using the framework method.ResultsInterviewees identified that a powerful feature of eIC is its personalized approach as it may increase participant empowerment. However, they identified several ethical and practical challenges, such as ensuring research participants are not overloaded with information and offering the same options to research participants who would prefer a paper-based informed consent rather than eIC. According to the interviewees, eIC has the potential to establish efficient long-term interactions between the research participants and the research team in order to keep the participants informed during and after the study. Interviewees emphasized that a personal interaction with the research team is of utmost importance and this cannot be replaced by an electronic platform. In addition, interviewees across the stakeholder groups supported the idea of having a harmonized eIC approach across the European Member States.ConclusionsInterviewees reported a range of design and implementation challenges which needs to be overcome to foster innovation in informing research participants and obtaining their consent electronically. It was considered important that the implementation of eIC runs alongside the face-to-face contact between research participants and the research team. Moreover, interviewees expect that eIC could offer the opportunity to enable a personalized approach and to strengthen continuous communication over time. If successfully implemented, eIC may facilitate the engagement of research participants in clinical research. (shrink)

Use of electronic health records within clinical encounters is increasingly pervasive. The digital record allows for data storage and sharing to facilitate patient care, billing, research, patient communication and quality-of-care improvement—all at once. However, this multifunctionality is also one of the main reasons care providers struggle with the EHR. These problems have often been described but are rarely approached from a philosophical point of view. We argue that a postphenomenological case study of the EHR could lead to (...) more in-depth insights. We will focus on two concepts—transparency and multistability—and translate them to the specific situation of the EHR. Transparency is closely related to an embodiment relation in which the user becomes less aware of the technology: it fades into the background, becoming a means of experience. A second key concept is that of multistability, referring to how a technology can serve multiple purposes or can have different meanings in different contexts. The EHR in this sense is multistable by design. Future EHR design could incorporate multistable information differently, allowing the provider to focus on patient care when interacting with the EHR. Moreover we argue that the use of the EHR in the daily workflow should become more transparent, while awareness of the computer in the specific context of the patient-provider relationship should increase. (shrink)

This paper focuses on the importance of digital communication between medical teams and patients and their families when mediated by technological tools. Medicine is changing following the fourth industrial (the digital) revolution: from CAT scans, to X-rays, to UV radiation, to electronic records, to treatment tracking apps, to telemedicine, and the use of AI in doctors' decision-making processes. The COVID-19 pandemic highlighted both the fruitful and problematic sides of this medical evolution. Digital tools such as tablets, smartphones, and (...) video calling apps proved to be essential. Accordingly, I analyze three cases that reveal the helpfulness and the limitations of new communication technologies: on physicians and non-hospitalized patients, on families and patients, and on healthcare professionals and patients' families. Since the medical relationship is not only clinical but also relational and human, one must pay attention to the communicative dimensions of it to remain at least partly _human-e_. (shrink)

Health authorities increasingly request that general practitioners use information and communication technologies such as electronic patient records for accountability purposes. This article deals with the use of EPRs among general practitioners in Britain. It examines two ways in which GPs use the EPR for accountability purposes. One way is to generate audit reports on the basis of the information that has been entered into the record. The other is to let the computer intervene in the clinical process (...) through prompts. The article argues that GPs' ambivalence toward using the EPR makes them active in finding ways that turn the EPR into a meaningful tool for them, that is, a tool that helps them provide what they see as good care. The article's main contribution is to show how accountability and autonomy are coproduced; less professional autonomy does not follow from more requests to document one's work. Instead, new forms of autonomy are produced in the sociotechnical network that is made up by health policy and local engagements with patients and technology. (shrink)

The integration of genetic information (GI) into the electronic health record (EHR) seems inevitable as the mainstreaming of genomics continues. Such newly provided accessibility to GI could be beneficial for improving health care, as well as for supporting clinical decision‐making and health management. Notwithstanding these promising benefits, the automatic integration of GI into the EHR, allowing unrestricted access to one's GI through patient portals, carries various knowledge‐related risks for patients. This article is focused on the potential case of (...) inadvertently revealing misattributed parentage through such practice. The article aims to identify key clinical and ethical implications of such revelation for adult patients. Clinical implications include, for example, altering the physician‐patient interaction and the need to enhance physician's genetic literacy to improve genetic‐information‐specific communication skills. Ethical implications yield arguments supporting disclosure of MP, such as autonomy, individuals' right to know medical information pertaining to them, and the right to know one's genetic origins. Arguments opposing disclosure of MP centre on the right not to know GI and concerns for post‐disclosure family relationships. Following the clinical and ethical analyses of these respective implications, we consider how such integration of GI into the EHR ought to be carried out, ethically. We therefore suggest a solution, featuring an autonomy‐based approach, built around EHR users' right not to know. Our solution of nuanced consent options (including a ‘genetic ignorance option’) is designed to enable patients' informed exposure to GI through the EHR, allowing them some control over their self‐ and familial narrative. (shrink)

The translational research community, in general, and the Clinical and Translational Science Awards (CTSA) community, in particular, share the vision of repurposing EHRs for research that will improve the quality of clinical practice. Many members of these communities are also aware that electronic health records (EHRs) suffer limitations of data becoming poorly structured, biased, and unusable out of original context. This creates obstacles to the continuity of care, utility, quality improvement, and translational research. Analogous limitations to sharing (...) objective data in other areas of the natural sciences have been successfully overcome by developing and using common ontologies. This White Paper presents the authors’ rationale for the use of ontologies with computable semantics for the improvement of clinical data quality and EHR usability formulated for researchers with a stake in clinical and translational science and who are advocates for the use of information technology in medicine but at the same time are concerned by current major shortfalls. This White Paper outlines pitfalls, opportunities, and solutions and recommends increased investment in research and development of ontologies with computable semantics for a new generation of EHRs. (shrink)

The concept of selecting for a disability, and deafness in particular, has triggered a controversial and sometimes acrimonious debate between key stakeholders. Previous studies have concentrated on the views of the deaf and hard of hearing, health professionals and ethicists towards reproductive selection for deafness. This study, however, is the first of its kind examining the views of hearing children of deaf adults towards preimplantation genetic diagnosis and prenatal diagnosis to select for or against deafness. Hearing children of deaf adults (...) straddle both the deaf and hearing worlds, and this dual perspective makes them ideally placed to add to the academic discourse concerning the use of genetic selection for or against deafness. The study incorporated two complementary stages, using initial, semistructured interviews with key informants as a means to guide the subsequent development of an electronic survey, completed anonymously by 66 individuals. The participants shared many of the same views as deaf individuals in the D/deaf community. The similarities extended to their opinions regarding deafness not being a disability, their ambivalence towards having hearing or deaf children and their general disapproval of the use of genetic technologies to select either for or against deafness. (shrink)

For decades, health information has been collected and shared for health care delivery and public health purposes. While the “primary use” of patient data for providing direct health care services is the cornerstone of health care practice, health departments rely on data sharing for research and analysis to support disease prevention and health promotion in the population. As the U.S. health system undergoes a digital revolution, health information that was previously captured in paper form now can be captured electronically. (...) class='Hi'>Electronic health information has transformed the efficiency, capacity, and functions of the U.S. health system. For this reason, there is increased attention to the “secondary use” of electronic patient data for public health uses, including disease reporting and investigation, syndromic surveillance, and patient-specific or population-level communications about health conditions and their associated risk factors. Secondary uses may also encompass clinical research, licensure, and payment for services. (shrink)

The OpenNotes (ON) mandate in the 21st Century Cures Act requires that patients or their legally authorized representatives be able to access their medical information in their electronic medical record (EMR) in real time. Ethics notes fall under the domain of this policy. We argue that ethics notes are unique from other clinical documentation in a number of ways: they lack best-practice guidelines, are written in the context of common misconceptions surrounding the purpose of ethics consultation, and often (...) answer questions of a different nature than other documentation. Thus, we believe the clinical ethics community would benefit from clarification on when the withholding of ethics notes is justified. We provide recommendations for excluding information from ethics documentation based on the likelihood and magnitude of harm that may occur with particular disclosures and suggest approaches to decrease the potential harms that may occur. We define and explain six types of reasons to exclude information from ethics notes based on significant harms that are not addressed in the ON policy: (1) harmful revelations from a protected chart note; (2) negative emotional effects on patients or families; (3) the purpose of the consultation is undermined by harmful consequences; (4) avoidable negative impact on interpersonal dynamics; (5) inappropriate labeling or disclosure of medical, social, or financial information; and (6) inclusion of biasing or otherwise unfair information. We also suggest approaches to mitigate harm when excluding, including, reframing, or delaying release of information that is perceived to be relevant to an ethics case. Overall, we hope our analysis and recommendations will initiate a much-needed discussion about the impact of the ON mandate on clinical ethics documentation. (shrink)

Patient portals are poised to transform health communication by empowering patients with rapid access to their own health data. The 21st Century Cures Act is a US federal law that, among other provisions, prevents health entities from engaging in practices that disrupt the exchange of electronic health information—a measure that may increase the usage of patient health portals. Caregiver access to patient portals, however, may lead to breaches in patient privacy and confidentiality if not managed properly through proxy (...) accounts. We present an ethical framework that guides policy and clinical workflow development for healthcare institutions to support the best use of patient portals. Caregivers are vital members of the care team and should be supported through novel forms of health information technology (IT). Patients, however, may not want all information to be shared with their proxies so healthcare institutions must support the development and use of separate proxy accounts as opposed to using the patient’s own account as well provide controls for limiting the scope of information displayed in the proxy accounts. Lastly, as socioeconomic barriers to adoption of health IT persist, healthcare providers must work to ensure multiple streams of patient communication, to prevent further propagating health inequities. (shrink)

The Internet and electronic communication technologies have taken the psychological field by storm. From the innovations of new web interventions for easier access to care to the increased ease of client scheduling and communication, these developments have greatly advanced mental health care. However, these advantages are also laced with ethical implications that warrant attention. Without judicious consideration, social media use by psychotherapists can lead to inadvertent self-disclosures to clients that risk damaging the therapeutic alliance, interfering with therapeutic (...) processes, and placing both the client and clinician at risk. A better understanding of the ethical implications of social media use is warranted so that guidelines for appropriate use can be developed and implemented. This article highlights the potential risks associated with social media use by psychotherapists and, in absence of formalized guidelines, offers recommendations for best practices. (shrink)

Augmentative and alternative communication brain-computer interface systems are intended to offer communication access to people with severe speech and physical impairment without requiring volitional movement. As the field moves toward clinical implementation of AAC-BCI systems, research involving participants with SSPI is essential. Research has demonstrated variability in AAC-BCI system performance across users, and mixed results for comparisons of performance for users with and without disabilities. The aims of this systematic review were to describe study, system, and participant (...) characteristics reported in BCI research, summarize the communication task performance of participants with disabilities using AAC-BCI systems, and explore any differences in performance for participants with and without disabilities. Electronic databases were searched in May, 2018, and March, 2021, identifying 6065 records, of which 73 met inclusion criteria. Non-experimental study designs were common and sample sizes were typically small, with approximately half of studies involving five or fewer participants with disabilities. There was considerable variability in participant characteristics, and in how those characteristics were reported. Over 60% of studies reported an average selection accuracy ≤70% for participants with disabilities in at least one tested condition. However, some studies excluded participants who did not reach a specific system performance criterion, and others did not state whether any participants were excluded based on performance. Twenty-nine studies included participants both with and without disabilities, but few reported statistical analyses comparing performance between the two groups. Results suggest that AAC-BCI systems show promise for supporting communication for people with SSPI, but they remain ineffective for some individuals. The lack of standards in reporting outcome measures makes it difficult to synthesize data across studies. Further research is needed to demonstrate efficacy of AAC-BCI systems for people who experience SSPI of varying etiologies and severity levels, and these individuals should be included in system design and testing. Consensus in terminology and consistent participant, protocol, and performance description will facilitate the exploration of user and system characteristics that positively or negatively affect AAC-BCI use, and support innovations that will make this technology more useful to a broader group of people.Clinical trial registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018095345, PROSPERO: CRD42018095345. (shrink)

Statistics play a critical role in biological and clinical research. However, most reports of scientific results in the published literature make it difficult for the reader to reproduce the statistical analyses performed in achieving those results because they provide inadequate documentation of the statistical tests and algorithms applied. The Ontology of Biological and Clinical Statistics (OBCS) is put forward here as a step towards solving this problem. Terms in OBCS, including ‘data collection’, ‘data transformation in statistics’, ‘data visualization’, (...) ‘statistical data analysis’, and ‘drawing a conclusion based on data’, cover the major types of statistical processes used in basic biological research and clinical outcome studies. OBCS is aligned with the Basic Formal Ontology (BFO) and extends the Ontology of Biomedical Investigations (OBI), an OBO (Open Biological and Biomedical Ontologies) Foundry ontology supported by over 20 research communities. We discuss two examples illustrating how the ontology is being applied. In the first (biological) use case, we describe how OBCS was applied to represent the high throughput microarray data analysis of immunological transcriptional profiles in human subjects vaccinated with an influenza vaccine. In the second (clinical outcomes) use case, we applied OBCS to represent the processing of electronic health care data to determine the associations between hospital staffing levels and patient mortality. Our case studies were designed to show how OBCS can be used for the consistent representation of statistical analysis pipelines under two different research paradigms. By representing statistics-related terms and their relations in a rigorous fashion, OBCS facilitates standard data analysis and integration, and supports reproducible biological and clinical research. (shrink)

Build the skills you need to understand and resolve ethical problems! Ethical Dimensions in the Health Professions, 7th Edition provides a solid foundation in ethical theory and concepts, applying these principles to the ethical issues surrounding health care today. It uses a unique, six-step decision-making process as a framework for thinking critically and thoughtfully, with case studies of patients to illustrate ethical topics such as conflict of interest, patient confidentiality, and upholding best practices. Written by Regina F. Doherty, an educator (...) and occupational therapist, this book will help you make caring and effective ethical choices that improve patient care and outcomes. UNIQUE! Ethical decision-making process provides an organizing framework to use in making the best decisions when faced with ethical problems. Patient stories depict real-life situations and demonstrate the ethical decision-making process. Reflection boxes depict important concepts and stimulate critical thinking. Summary boxes highlight the most important information in each section. Coverage of interprofessional team decision-making reflects this important, expanding movement in healthcare nationally and internationally. Questions for thought and discussion encourage students to apply the ethical decision-making process to different situations. NEW! Updated content throughout the book reflects the changes in the growing interprofessional movement. NEW! Expanded content on clinician well-being includes tools for supporting moral resilience and preventing burnout in health professionals. NEW! Updated content addresses the topics of social justice, health disparities, intersectionality, and health outcomes. NEW! Updated national standards and regulations are provided for electronic health communications, data protections, and clinical research. NEW! Coverage of scientific literature is expanded with studies on the effects of compassion on patient outcomes, patient safety, and provider and organizational well-being. NEW! Coverage of ethical issues impacting healthcare and society includes topics such as medical scarcity due to healthcare supply chain shortages and extreme weather events due to climate change. (shrink)

Accrediting institutions and state departments of education are requiring descriptions to work together to tie teacher education curriculum to state and national standards. Most state and national accrediting bodies have at least one diversity standard. Principle Three of the Interstate New Teacher Assessment and Support Consortium (INTASC; 1992) states, “The teacher understands how students differ in their approaches to learning and creates instructional opportunities that are adapted to diverse learners” (p. 18). This article describes how the college of education faculty (...) at Fort Hays State University in Kansas and the faculty at Stillman College, a historically black college in Alabama, are creatlng an electronic learning community to meet this challenge. The program uses the case study method to lead students to think critically about their own dispositions and the strategies they are using to prepare their future teachers to meet the diverse needs of their future classrooms. (shrink)

Volume 25, Issue 2, February 2025, Page 87-90.

As health systems around the world turn towards highly distributed, specialized and cooperative structures to increase quality and safety of care as well as efficiency and efficacy of delivery processes, there is a growing need for supporting communication and collaboration of all parties involved with advanced ICT solutions. The Electronic Health Record (EHR) provides the information platform which is maturing towards the eHealth core application. To meet the requirements for sustainable, semantically interoperable, and trustworthy EHR solutions, different standards (...) and different national strategies have been established. The workshop summarizes the requirements for such advanced EHR systems and their underlying architecture, presents different strategies and solutions advocated by corresponding protagonists, discusses pros and cons as well as harmonization and migration strategies for those approaches. It particularly highlights a turn towards ontology-driven architectures. (shrink)

Introduction:The effects of specific suggestions are usually studied by measuring parameters that are directly addressed by these suggestions. We recently proposed the use of a uniform, unrelated, and objective measure like maximal muscle strength that allows comparison of suggestions to avoid nocebo effects and thus to improve communication. Since reduced breathing strength might impair respiration and increase the risk of post-operative pulmonary complications, the aim of the present study was to evaluate the effects of the suggestions on respiratory muscle (...) power. Both the identification and neutralization of negative suggestions in the clinical context and stimulating suggestions could improve breathing force, a predictor of physical fitness and convalescence.MethodsIn 50 healthy, adult volunteers, respiratory muscle strength was measured by maximal inspiratory and expiratory pressures, as well as by maximal inspiratory and expiratory flows. Baseline was compared to values after application of eleven suggestions, five out of clinical context, including memory of negative or positive past, risk information for informed consent, and a non-verbal suggestion. Six stimulating suggestions included self-affirmation, empowering words, a heroic mirror image, and an imagination.ResultsAll suggestions showed an impact on respiratory muscle strength, indicating placebo and nocebo effects. No single parameter could represent the breathing force in its complexity, however, trends and different specific aspects of it were measured. The strongest reaction was observed with the recall of a previous negative situation resulting in a reduction in expiratory flow to 96.1% of baseline. After risk information, a decrease was observed in three of the parameters, with the highest extend in expiratory pressure by 4.4%. This nocebo effect was neutralized by adding positive aspects to the risk information. Every intended strengthening suggestion resulted in statistically significant increases of at least one parameter, with changes of up to 10%, indicating placebo effects. Here, expiration was more affected than inspiration. Sex was the only influencing factor reaching statistical significance, with stronger reactions in women.ConclusionRespiratory muscle strength proved to be sensitive to suggestions with clinical context, as well as suggestions intended for stimulation. With this objective measurement, evaluation, and comparison of different suggestions is possible to help avoid nocebo effects. The demonstrated effect of supporting suggestions can be followed up and used in clinical practice. (shrink)

While this paper does not explicitly define the concept of autonomy, the way Ubel et al describe clinicians’ failures to enhance their patients’ autonomy reflects a broader understanding of autonomy than the default account as free and informed choice. In this OPC I would demonstrate that the communication strategies the authors recommend reflects a more sophisticated conception of autonomy than the understanding that typically prevails in bioethics. I will also distinguish between weak and strong forms of paternalism, and argue (...) that a weak paternalistic approach is not only defensible but also aligns with the strategies the authors propose. Thus, by clarifying the concept of autonomy we can show how it can be enhanced in practice. (shrink)

Surveillance is essential for communicable disease prevention and control. Traditional notification of demographic and clinical information, about individuals with selected infectious diseases, allows appropriate public health action and is protected by public health and privacy legislation, but is slow and insensitive. Big data–based electronic surveillance, by commercial bodies and government agencies, which draws on a plethora of internet- and mobile device–based sources, has been widely accepted, if not universally welcomed. Similar anonymous digital sources also contain syndromic information, which (...) can be analysed, using customised algorithms, to rapidly predict infectious disease outbreaks, but the data are nonspecific and predictions sometimes misleading. However, public health authorities could use these online sources, in combination with de-identified personal health data, to provide more accurate and earlier warning of infectious disease events—including exotic or emerging infections—even before the cause is confirmed, and allow more timely public health intervention. Achieving optimal benefits would require access to selected data from personal electronic health and laboratory records and the potential to re-identify individuals found to be involved in outbreaks, to ensure appropriate care and infection control. Despite existing widespread digital surveillance and major potential community benefits of extending its use to communicable disease control, there is considerable public disquiet about allowing public health authorities access to personal health data. Informed public discussion, greater transparency and an ethical framework will be essential to build public trust in the use of new technology for communicable disease control. (shrink)

Objective: This study is a meta-analysis that considers the association between dyadic coping and emotional functioning, and between dyadic coping and the quality of the relationship as perceived by cancer patients and their life partners.Methods: A systematic search was conducted in the electronic databases PsycINFO, PubMed, ScienceDirect and those peer-reviewed cross-sectional and longitudinal studies published up until April 2020 that investigated these relationships were selected.Results: A total of 1,168 studies were identified, of which 10 met the inclusion criteria. These (...) evidenced statistically significant positive relationships between common dyadic coping and emotional functioning and between common dyadic coping and the quality of the relationship as perceived by patients and their partners. There was also a statistically significant positive association between stress communication, supportive dyadic coping, and the quality of the relationship. In addition, a statistically significant negative association was found between negative dyadic coping and the quality of the relationship as perceived by patients' partners and also between negative dyadic coping and the quality of the relationship as perceived by patients.Conclusions: The results suggest the existence of a significant association between dyadic coping and emotional functioning and between dyadic coping and the quality of the relationship as perceived by members of couples facing cancer. However, these results must be interpreted with caution due to the small number of studies included in the analysis. Clinically, an understanding of the existence of such relationships is helpful for the implementation, and study of the effectiveness of, interventions aimed at improving dyadic coping in order to improve both quality of life and quality of relationship in couples where there is an oncological diagnosis. (shrink)

In recent decades there has been a significant increase in community rehabilitation programs for people with mental health conditions. One such nationwide programs is Amitim in Israel whose mission is to foster the psychosocial rehabilitation of people with mental health conditions in the community. Amitim’s flagship program consists of arts-based groups that integrate participants with mental health conditions and non-clinical community members. To better understand the experiences of participants in these arts-based groups, five focus groups were conducted with participants (...) from 15 integrated arts-based groups. In total, 17 people with mental health conditions and 21 non-clinical community members were interviewed for this qualitative study. Three main themes emerged from the thematic analysis: creation and expression through the arts promote well-being, self-disclosure in a safe space encourages a sense of belonging, and “we are all in the same boat.” The participants underscored the role of creation and expression through the arts in facilitating emotional expression, self-discovery, interpersonal communication, and spiritual elevation. The findings suggest that the facilitators should instill a sense of equality by enabling intergroup acquaintances without labeling participants’ mental health status. Integrated arts-based groups should be accompanied by a mental health professional who can contain and work through complex emotional situations when needed. Arts therapists who specialize in both arts and mental health are particularly suitable for this role. Overall, the interviewees reported that participation in the integrated arts-based groups positively impacted their personal recovery processes by providing a corrective experience of equality as well as enhancing a sense of belonging to the community and social relationships. The participants also reported being empowered by the final artistic event that not only enhanced their sense of visibility, competence, and aspirations for future development in personal, interpersonal, and artistic realms, but also helped to combat both self- and public stigma. (shrink)

Background Escalating levels of obesity place enormous and growing demands on Health care provision in the (U.K.) United Kingdom. Resources are limited with increasing and competing demands upon them. Ethical considerations underpin clinical decision making generally, but there is limited evidence regarding the relationship between these variables particularly in terms of treating individuals with obesity. Research aim To investigate the views of National Health Service (NHS) clinicians on navigating the ethical challenges and decision making associated with obesity management in (...) adults with chronic illness. Research design A cross-sectional, multi-site survey distributed electronically. Participants A consensus sample of nurses, doctors, dietitians and final year students in two NHS Trusts and two Universities. Ethical considerations Ethical and governance approvals obtained from a National Ethics Committee (11NIR035), two universities and two teaching hospitals. Results Of the total ( n = 395) participants, the majority were nurses (48%), female (79%) and qualified clinicians (59%). Participants strongly considered the individual to have primary responsibility for a healthy weight and an obligation to attempt to maintain that healthy weight if they wish to access NHS care. Yet two thirds would not withhold treatment for patients with obesity. Discussion While clinicians were clear about patient responsibility and obligations, the majority prioritised their duty of care and would not invoke a utilitarian approach to decision making. This may reflect awareness of obesity as a multi-faceted entity, with responsibility for support and management shared amongst society in general. Conclusions The attitudes of this sample of clinicians complemented the concept of the health service as being built on a principle of community, with each treated according to their need. However limited resources challenge the concept of needs-based decisions consequently societal engagement is necessary to agree a pragmatic way forward. (shrink)

The practice and development of modern medicine requires large amounts of data, particularly in the domain of cancer. The future of personalized medicine lies neither with “genomic medicine” nor with “precision medicine”, but with “data medicine”. The establishment of this DM has required far-reaching changes, to establish four essential elements connecting patients and doctors: biobanks, databases, bioinformatic platforms and genomic platforms. The “transformation” of scientific research areas, such as genetics, bioinformatics and biostatistics, into clinical specialties has generated a new (...) vision of care. Molecular tumor boards are one response to these changes and are now providing better access to next-generation sequencing and new cancer treatments to patients with inoperable or metastatic cancers, and those for whom the usual treatment has failed. However, MTB face a crucial ethical challenge: maintaining and improving the trust of patients, clinicians, researchers and industry in academic medical centers supported by private or public funding rather than providing genetic data directly to private companies. We believe that, in this era of DM, appropriate modern digital communication networks will be required to maintain this trust and to improve the organization and effectiveness of the system. There is, therefore, a need to reconsider the form and content of informed consent documents at all academic medical centers and to introduce dynamic and electronic informed consent. (shrink)

BackgroundThe proper and ethical inclusion of PWLHIV and their young children in research is paramount to ensure valid evidence is generated to optimize treatment and care. Little empirical data exists to inform ethical considerations deemed most critical to these populations. Our study aimed to systematically review the empiric literature regarding ethical considerations for research participation of PWLHIV and their young children.MethodsWe conducted this systematic review in partnership with a medical librarian. A search strategy was designed and performed within the following (...) electronic databases: Ovid MEDLINE, Embase and CINAHL. We screened titles and abstracts using the following inclusion criteria: (1) a study population of PWLHIV or children under 5 years of age; and (2) collection of qualitative or quantitative data regarding ethics of research participation. Excluded were reviews, commentaries, policy statements, clinical care-related ethics concerns, abstracts, case studies, or studies unrelated to HIV research. Studies were appraised for quality, data were extracted, and studies were qualitatively analyzed using a principle-based ethical framework within the Belmont Report.ResultsOf the 7470 titles identified, 538 full-text articles were reviewed for eligibility and only three articles met full criteria for inclusion within this review. While we allowed for inclusion of studies involving young children born to mothers with HIV, only articles focused on PWLHIV were identified. Within the results of these studies, four themes emerged: (1) adequacy of informed consent; (2) consideration of paternal involvement; (3) balancing risks; and (4) access to research and treatment. A strength of this review is that it included perspectives of international research investigators, community leaders, and male partners. However, only two studies collected empiric data from PWLHIV regarding their experiences participating in researchConclusionResearchers and funding agencies should be aware of these considerations and appreciate the value of and critical need for formative research to ensure clinical trials involving PWLHIV promote ethical, well-informed research participation and, ultimately, improve care outcomes. More research is needed to create a comprehensive ethical framework for researchers when conducting studies with PWLHIV. (shrink)

Background: Chinese Taoist cognitive therapy (CTCT), a culture-oriented psychological therapy for Chinese mental well-being, has been proposed for decades. However, the evidence for its effects is unclear. This study aimed to systematically assess the effect of this therapy on symptoms of depression and anxiety in Chinese adults. Methods: Relevant studies were searched from major electronic databases through November 2018 without language limits. Several search terms used include “anxiety” OR “depression” AND “Taoism” OR “Daoism” OR “Chinese Taoist Cognitive Therapy”. A (...) total of 11 clinical trials focusing on CTCT were included in this meta-analysis. Random-effects meta-analytical models were conducted. Heterogeneity and publication bias were also explored. Results: Eight clinical trials for 580 subjects were included. The majority of these studies explored samples with depressive symptoms. Overall, CTCT significantly reduced depressive symptoms with a small positive effect (SMD = 0.16, 95% CI: -0.36-0.68). Medium-to-large effect sizes were observed across individuals with clinical or nonclinical depression and chronic physical diseases (SMD = 0.70, 95%CI: 0.27-1.13 and SMD = 0.72, 95%CI: 0.09-1.35, respectively). However, the effectiveness for anxiety symptoms remains debatable. Conclusions: Our findings hold promise that CTCT can help reduce depressive symptoms in Chinese adults, including patients with chronic physical diseases and clinical or nonclinical depression. Our findings may be generalized to Chinese communities in other countries. (shrink)

Background Stroke is a worldwide problem with a limited number of approved treatments. Obtaining informed consent for acute stroke therapy is complicated by the breadth of information that must be communicated in a short period of time, the hectic nature of the emergency environment, the possible lack of understanding by the patient and/or family, and the critically time-sensitive nature of treatment for stroke. Complicating matters even further, patients are often unable to consent for themselves, placing the burden on surrogates to (...) infer patients’ wishes regarding treatment, and potentially limiting acute treatment by practitioners. Innovation An advance directive for acute stroke therapy was created, entitled COAST (Coordinating Options for Acute Stroke Therapy). This clinical initiative is being piloted at a large comprehensive stroke center, including the development of the advance directive form, integration of the form with electronic medical records, training healthcare providers, and outreach to patients. Conclusions COAST is an advance directive for stroke designed to make stroke care more efficient, optimize patients’ autonomy, improve the quality of healthcare, and streamline the ethical management of complex care decisions in acute stroke. The inherent benefit of COAST is in providing patients and their families with more information regarding stroke and its treatment options, allowing them to take a more active role in their care. (shrink)

The study sets out to develop an online course for medical professionals who are not native Arabic speakers. The present study relied on a questionnaire developed by reviewing relevant theoretical literature and prior research in order to apply descriptive and analytical methods to accomplish the study's aims. The researcher sent an online questionnaire to a large number of healthcare workers, including doctors, nurses, lab techs, and radiology technicians. The objective of this survey is to learn about the linguistic communication (...) needs of healthcare workers and to find out when Arabic is useful for communicating with patients and meeting quality standards in healthcare. The study compiled a list of 36 linguistic needs pertaining to various medical settings (e.g., emergency rooms, outpatient clinics, hypnosis rooms, labs, and radiology departments), developed an electronic program to teach Arabic to non-native speakers, and made several suggestions and recommendations. (shrink)

One of the largest, oldest, and most interesting challenges in health care is the balancing act in which clinicians have generally uncontroversial duties both to individual patients and to communities. Physicians and nurses must — so we teach them — put patients first, and at the same time recognize that individuals are members of communities. Individuals affect the health of communities, and communities affect the health of individuals. Thus, the moral and professional duties that result are sometimes in conflict.Moreover, the (...) traditional, prosaic clinical encounter is evolving in an environment increasingly shaped by electronic health records, personal health records, pharmacogenomics and vast networks of data collection and storage for public health surveillance, human subjects research, health services evaluation, and comparative effectiveness research. Health information technology is changing everything. It would be perverse otherwise: imagine large amounts of data and information either ignored, missed, or collected and then ignored. (shrink)

When Congress passed HIPAA, it did not intend to constrain public health's data sharing in the same way as clinical or payers. In fact, HIPAA recognizes data sharing with public health as a matter of national priority and shields this function from its reach. However, a health department may offer services that bring it within HIPAA's purview, such as running a Children's Health Insurance Program or a laboratory that bills electronically. When this is the case, HIPAA requires all information (...) and departments be subject to HIPAA unless the public health authority chooses to hybridize. Health departments might re-assess their coverage and elect to become a hybrid entity, thereby restricting HIPAA to only where required and removing barriers to information sharing with communities. (shrink)

We discuss the effectiveness of mediated communication (internet communication via a computer tablet) and tacit engagement in a Project on mental health. The project is aimed at improving the wellbeing of adult women living with chronic mental disorders in long-term psychiatric internment. The computer tablets act as "portals" to provide access and conatct with the outside world for patients who have poor (if any) external social support. This support includes a patient-centred psycho-social care, and accompanying clinical and (...) pharmaceutical treatment. Both patients and their relatives accepted the benefits of internet mediation, for very different reasons. For the patient, this is a flash of contact with humanity, and for the relatives the internet communication this proved to be an alternative to the need for physical proximity. As some patients had no relatives or friends to communicate (even remotely) with the outside world, and because there is a school next door to the clinic, we visualized that the communication between these two communities could provide both a therapeutic and poetic act of learning and compassion. The electronic portal could serve as a virtual bridge between two forbidden domains. Although awareness of students of the nearby school was raised about mental health, the use of internet mediation devoid of physical proximity made the students suspicious of the goal of the mediation. From the patient's side, however, each contact was an instance of joy. Several issues were raised from this exercise. (shrink)

As healthcare institutions expand and vertically integrate, healthcare delivery is less constrained by geography, nationality, or even by institutional boundaries. As part of this trend, some aspects of the healthcare process are shifted from medical centers back into the home and communities. Telehealth applications intended for health promotion, social services, and other activitiesprovide services outside clinical settings in homes, schools, libraries, and other governmental and community sites. Such developments include health information web sites, on-line support groups, automated telephone counseling, (...) interactive health promotion programs, and electronic mail exchanges. Concomitant with these developments is the growth of consumer health informatics, in which individuals seeking medical care or information are able to find various health information resources that take advantage of new information technologies. (shrink)

This paper critically examines a particular strategy for resolving the central ethical dilemma associated with randomized clinical trials — the “community equipoise” strategy . The dilemma is that RCTs appear to violate a physician's duty to choose that therapy which there is most reason to believe is in the patient's best interest, randomizing patients even once evidence begins to favor one treatment. The community equipoise strategy involves the suggestion that our judgment that neither treatment is to be preferred is (...) to be assessed according to a community rather than an individual standard. Thus, though a physician may personally believe that there is some reason to prefer one treatment, patients can legitimately be randomized if there remains disagreement in the community of medical professionals. Rationales in favor of this conception include the following: medical knowledge is best understood as residing in the community, the judgments of others count as evidence, and so should change one's own opinion, subjects would not be better off outside the trial, and the point of any trial is the resolution of dispute in the medical community. I critically examine these rationales and argue that they are insufficient. Amongst the problems are tensions between various of these underlying rationales, and important ambiguities in just what the CE criterion is to amount to. Finally, I argue that even if use of CE was justified, it would not justify carrying out RCTs anywhere near long enough to discharge our duty to gain reliable knowledge on which to base safe and effective medical practice. Hence, we need some different justification for carrying out RCTs. (shrink)

In almost every clinical interaction, clinicians must navigate interpersonal challenges with near‐instantaneous responses to patients. Yet medical ethics has largely overlooked these small, interpersonal exchanges, instead focusing on “big” ethical problems, such as euthanasia, brain death, or genetic modification. In 1995, Paul Komesaroff proposed the concept of microethics as a nonprinciplist approach to ethics that focuses on “what happens in every interaction between every doctor and every patient.” We aim to develop a microethics framework to guide everyday clinical (...) encounters, with a special focus on communication with patients and family members. We will advance three core insights: First, communication is an ethical act in ways seldom considered. Second, microethics is an essential lens through which to view the ethics of communication. Third, virtue can bridge reflective and automatic processes. Our intuitionist framework for microethics is thus based on this understanding of the role of virtue, and we propose six virtues that contribute to the goal of healing communication. (shrink)

Healthcare ethics consultants in the Veterans Health Administration (VHA) document consults in an enterprise-wide web-based database entitled IEWeb, serving as a system of record for healthcare ethics documentation at 1300 VA facilities. The need arose to evolve the database from an ethics process training resource into a more streamlined documentation repository that captures essential consult elements. A VHA National Center for Ethics in Health Care (NCEHC) Improvement Team convened for three tasks: (1) Specify and prioritize IEWeb changes (occurred via six (...) focus groups composed of “new user” and “super user” cohorts with analysis of existing documentation patterns); (2) Pilot the changes regionally (via regional communication, training, and reviews of pre-post use patterns); and (3) Measure the impact of national change implementation on user perspectives (via pre-and post-change implementation polls). Focus groups identified six implementable priority areas for ethics consult documentation improvement, including the development of a usable consult summary note for ready conversion from IEWeb fields into the electronic health record. Post-IEWeb updates showed an increased number of consults documented, a reduction in “time to consult documentation closure” by a mean of 4.5 days, and a clinically-meaningful improvement in the quality of documentation (78% of ethics questions scored “above-bar” on the validation tool pre- vs. 89% scored “above-bar” post-IEWeb changes, n = 140). According to national survey findings, the number of consultants documenting “all” consults in IEWeb increased, satisfaction increased, and perception of documentation difficulty decreased. IEWeb simplification enabled ethics consultants to re-focus their documentation completion efforts by decreasing perception of documentation burden while improving documentation frequency and quality in a clinically-meaningful way. (shrink)

Beyond Clinical Dehumanisation Toward the Other offers a rare and intimate portrayal of the moral process of a mental health clinician that interrogates the intractable problem of systemic dehumanization in community mental health care, and looks to the notion of 'wonder,' and the visionary relational ethics of Emmanuel Levinas, for a possible cure. This book is an ethical primer for mental health professionals, researchers, educators, advocates and service users working to re-imagine and heal a broken system by challenging the (...) underpinnings of entrenched dehumanization and standing with those they "serve". (shrink)

Table of contentsI1 Proceedings of the 4th World Conference on Research IntegrityConcurrent Sessions:1. Countries' systems and policies to foster research integrityCS01.1 Second time around: Implementing and embedding a review of responsible conduct of research policy and practice in an Australian research-intensive universitySusan Patricia O'BrienCS01.2 Measures to promote research integrity in a university: the case of an Asian universityDanny Chan, Frederick Leung2. Examples of research integrity education programmes in different countriesCS02.1 Development of a state-run “cyber education program of research ethics” in (...) KoreaEun Jung Ko, Jin Sun Kwak, TaeHwan Gwon, Ji Min Lee, Min-Ho LeeCS02.3 Responsible conduct of research teachers’ training courses in Germany: keeping on drilling through hard boards for more RCR teachersHelga Nolte, Michael Gommel, Gerlinde Sponholz3. The research environment and policies to encourage research integrityCS03.1 Challenges and best practices in research integrity: bridging the gap between policy and practiceYordanka Krastev, Yamini Sandiran, Julia Connell, Nicky SolomonCS03.2 The Slovenian initiative for better research: from national activities to global reflectionsUrsa Opara Krasovec, Renata SribarCS03.3 Organizational climate assessments to support research integrity: background of the Survey of Organizational Research Climate and the experience with its use at Michigan State UniversityBrian C. Martinson, Carol R. Thrush, C.K. Gunsalus4. Expressions of concern and retractionsCS04.1 Proposed guidelines for retraction notices and their disseminationIvan Oransky, Adam MarcusCS04.2 Watching retractions: analysis of process and practice, with data from the Wiley retraction archivesChris Graf, Verity Warne, Edward Wates, Sue JoshuaCS04.3 An exploratory content analysis of Expressions of ConcernMiguel RoigCS04.4 An ethics researcher in the retraction processMichael Mumford5. Funders' role in fostering research integrityCS05.1 The Fonds de Recherche du Québec’s institutional rules on the responsible conduct of research: introspection in the funding agency activitiesMylène Deschênes, Catherine Olivier, Raphaëlle Dupras-LeducCS05.2 U.S. Public Health Service funds in an international setting: research integrity and complianceZoë Hammatt, Raju Tamot, Robin Parker, Cynthia Ricard, Loc Nguyen-Khoa, Sandra TitusCS05.3 Analyzing decision making of funders of public research as a case of information asymmetryKarsten Klint JensenCS05.4 Research integrity management: Empirical investigation of academia versus industrySimon Godecharle, Ben Nemery, Kris Dierickx5A: Education: For whom, how, and what?CS05A.1 Research integrity or responsible conduct of research? What do we aim for?Mickey Gjerris, Maud Marion Laird Eriksen, Jeppe Berggren HoejCS05A.2 Teaching and learning about RCR at the same time: a report on Epigeum’s RCR poll questions and other assessment activitiesNicholas H. SteneckCS05A.4 Minding the gap in research ethics education: strategies to assess and improve research competencies in community health workers/promoteresCamille Nebeker, Michael Kalichman, Elizabeth Mejia Booen, Blanca Azucena Pacheco, Rebeca Espinosa Giacinto, Sheila Castaneda6. Country examples of research reward systems and integrityCS06.1 Improving systems to promote responsible research in the Chinese Academy of SciencesDing Li, Qiong Chen, Guoli Zhu, Zhonghe SunCS06.4 Exploring the perception of research integrity amongst public health researchers in IndiaParthasarathi Ganguly, Barna Ganguly7. Education and guidance on research integrity: country differencesCS07.1 From integrity to unity: how research integrity guidance differs across universities in Europe.Noémie Aubert Bonn, Kris Dierickx, Simon GodecharleCS07.2 Can education and training develop research integrity? The spirit of the UNESCO 1974 recommendation and its updatingDaniele Bourcier, Jacques Bordé, Michèle LeducCS07.3 The education and implementation mechanisms of research ethics in Taiwan's higher education: an experience in Chinese web-based curriculum development for responsible conduct of researchChien Chou, Sophia Jui-An PanCS07.4 Educating principal investigators in Swiss research institutions: present and future perspectivesLouis Xaver Tiefenauer8. Measuring and rewarding research productivityCS08.1 Altimpact: how research integrity underpins research impactDaniel Barr, Paul TaylorCS08.2 Publication incentives: just reward or misdirection of funds?Lyn Margaret HornCS08.3 Why Socrates never charged a fee: factors contributing to challenges for research integrity and publication ethicsDeborah Poff9. Plagiarism and falsification: Behaviour and detectionCS09.1 Personality traits predict attitude towards plagiarism of self and others in biomedicine: plagiarism, yes we can?Martina Mavrinac, Gordana Brumini, Mladen PetrovečkiCS09.2 Investigating the concept of and attitudes toward plagiarism for science teachers in Brazil: any challenges for research integrity and policy?Christiane Coelho Santos, Sonia VasconcelosCS09.3 What have we learnt?: The CrossCheck Service from CrossRefRachael LammeyCS09.4 High p-values as a sign of data fabrication/falsificationChris Hartgerink, Marcel van Assen, Jelte Wicherts10. Codes for research integrity and collaborationsCS10.1 Research integrity in cross-border cooperation: a Nordic exampleHanne Silje HaugeCS10.3 Research integrity, research misconduct, and the National Science Foundation's requirement for the responsible conduct of researchAaron MankaCS10.4 A code of conduct for international scientific cooperation: human rights and research integrity in scientific collaborations with international academic and industry partnersRaffael Iturrizaga11. Countries' efforts to establish mentoring and networksCS11.1 ENRIO : a network facilitating common approaches on research integrity in EuropeNicole FoegerCS11.2 Helping junior investigators develop in a resource-limited country: a mentoring program in PeruA. Roxana Lescano, Claudio Lanata, Gissella Vasquez, Leguia Mariana, Marita Silva, Mathew Kasper, Claudia Montero, Daniel Bausch, Andres G LescanoCS11.3 Netherlands Research Integrity Network: the first six monthsFenneke Blom, Lex BouterCS11.4 A South African framework for research ethics and integrity for researchers, postgraduate students, research managers and administratorsLaetus OK Lategan12. Training and education in research integrity at an early career stageCS12.1 Research integrity in curricula for medical studentsGustavo Fitas ManaiaCS12.2 Team-based learning for training in the responsible conduct of research supports ethical decision-makingWayne T. McCormack, William L. Allen, Shane Connelly, Joshua Crites, Jeffrey Engler, Victoria Freedman, Cynthia W. Garvan, Paul Haidet, Joel Hockensmith, William McElroy, Erik Sander, Rebecca Volpe, Michael F. VerderameCS12.4 Research integrity and career prospects of junior researchersSnezana Krstic13. Systems and research environments in institutionsCS13.1 Implementing systems in research institutions to improve quality and reduce riskLouise HandyCS13.2 Creating an institutional environment that supports research integrityDebra Schaller-DemersCS13.3 Ethics and Integrity Development Grants: a mechanism to foster cultures of ethics and integrityPaul Taylor, Daniel BarrCS13.4 A culture of integrity at KU LeuvenInge Lerouge, Gerard Cielen, Liliane Schoofs14. Peer review and its role in research integrityCS14.1 Peer review research across disciplines: transdomain action in the European Cooperation in Science and Technology “New Frontiers of Peer Review ”Ana Marusic, Flaminio SquazzoniCS14.2 Using blinding to reduce bias in peer reviewDavid VauxCS14.3 How to intensify the role of reviewers to promote research integrityKhalid Al-Wazzan, Ibrahim AlorainyCS14.4 Credit where credit’s due: professionalizing and rewarding the role of peer reviewerChris Graf, Verity Warne15. Research ethics and oversight for research integrity: Does it work?CS15.1 The psychology of decision-making in research ethics governance structures: a theory of bounded rationalityNolan O'Brien, Suzanne Guerin, Philip DoddCS15.2 Investigator irregularities: iniquity, ignorance or incompetence?Frank Wells, Catherine BlewettCS15.3 Academic plagiarismFredric M. Litto16. Research integrity in EuropeCS16.1 Whose responsibility is it anyway?: A comparative analysis of core concepts and practice at European research-intensive universities to identify and develop good practices in research integrityItziar De Lecuona, Erika Löfstrom, Katrien MaesCS16.2 Research integrity guidance in European research universitiesKris Dierickx, Noémie Bonn, Simon GodecharleCS16.3 Research Integrity: processes and initiatives in Science Europe member organisationsTony Peatfield, Olivier Boehme, Science Europe Working Group on Research IntegrityCS16.4 Promoting research integrity in Italy: the experience of the Research Ethics and Bioethics Advisory Committee of the Consiglio Nazionale delle Ricerche Cinzia Caporale, Daniele Fanelli17. Training programs for research integrity at different levels of experience and seniorityCS17.1 Meaningful ways to incorporate research integrity and the responsible conduct of research into undergraduate, graduate, postdoctoral and faculty training programsJohn Carfora, Eric Strauss, William LynnCS17.2 "Recognize, respond, champion": Developing a one-day interactive workshop to increase confidence in research integrity issuesDieter De Bruyn, Bracke Nele, Katrien De Gelder, Stefanie Van der BurghtCS17.4 “Train the trainer” on cultural challenges imposed by international research integrity conversations: lessons from a projectJosé Roberto Lapa e Silva, Sonia M. R. Vasconcelos18. Research and societal responsibilityCS18.1 Promoting the societal responsibility of research as an integral part of research integrityHelene IngierdCS18.2 Social responsibility as an ethical imperative for scientists: research, education and service to societyMark FrankelCS18.3 The intertwined nature of social responsibility and hope in scienceDaniel Vasgird, Stephanie BirdCS18.4 Common barriers that impede our ability to create a culture of trustworthiness in the research communityMark Yarborough19. Publication ethicsCS19.1 The authors' forum: A proposed tool to improve practices of journal editors and promote a responsible research environmentIbrahim Alorainy, Khalid Al-WazzanCS19.2 Quantifying research integrity and its impact with text analyticsHarold GarnerCS19.3 A closer look at authorship and publication ethics of multi- and interdisciplinary teamsLisa Campo-Engelstein, Zubin Master, Elise Smith, David Resnik, Bryn Williams-JonesCS19.4 Invisibility of duplicate publications in biomedicineMario Malicki, Ana Utrobicic, Ana Marusic20. The causes of bad and wasteful research: What can we do?CS20.1 From countries to individuals: unravelling the causes of bias and misconduct with multilevel meta-meta-analysisDaniele Fanelli, John PA IoannidisCS20.2 Reducing research waste by integrating systems of oversight and regulationGerben ter Riet, Tom Walley, Lex Marius BouterCS20.3 What are the determinants of selective reporting?: The example of palliative care for non-cancer conditionsJenny van der Steen, Lex BouterCS20.4 Perceptions of plagiarism, self-plagiarism and redundancy in research: preliminary results from a national survey of Brazilian PhDsSonia Vasconcelos, Martha Sorenson, Francisco Prosdocimi, Hatisaburo Masuda, Edson Watanabe, José Carlos Pinto, Marisa Palácios, José Lapa e Silva, Jacqueline Leta, Adalberto Vieyra, André Pinto, Mauricio Sant’Ana, Rosemary Shinkai21. Are there country-specific elements of misconduct?CS21.1 The battle with plagiarism in Russian science: latest developmentsBoris YudinCS21.2 Researchers between ethics and misconduct: A French survey on social representations of misconduct and ethical standards within the scientific communityEtienne Vergès, Anne-Sophie Brun-Wauthier, Géraldine VialCS21.3 Experience from different ways of dealing with research misconduct and promoting research integrity in some Nordic countriesTorkild VintherCS21.4 Are there specifics in German research misconduct and the ways to cope with it?Volker Bähr, Charité22. Research integrity teaching programmes and their challengesCS22.1 Faculty mentors and research integrityMichael Kalichman, Dena PlemmonsCS22.2 Training the next generation of scientists to use principles of research quality assurance to improve data integrity and reliabilityRebecca Lynn Davies, Katrina LaubeCS22.3 Fostering research integrity in a culturally-diverse environmentCynthia Scheopner, John GallandCS22.4 Towards a standard retraction formHervé Maisonneuve, Evelyne Decullier23. Commercial research and integrityCS23.1 The will to commercialize: matters of concern in the cultural economy of return-on-investment researchBrian NobleCS23.2 Quality in drug discovery data reporting: a mission impossible?Anja Gilis, David J. Gallacher, Tom Lavrijssen, Malwitz David, Malini Dasgupta, Hans MolsCS23.3 Instituting a research integrity policy in the context of semi-private-sector funding: an example in the field of occupational health and safetyPaul-Emile Boileau24. The interface of publication ethics and institutional policiesCS24.1 The open access ethical paradox in an open government effortTony SavardCS24.2 How journals and institutions can work together to promote responsible conductEric MahCS24.3 Improving cooperation between journals and research institutions in research integrity casesElizabeth Wager, Sabine Kleinert25. Reproducibility of research and retractionsCS25.1 Promoting transparency in publications to reduce irreproducibilityVeronique Kiermer, Andrew Hufton, Melanie ClyneCS25.2 Retraction notices issued for publications by Latin American authors: what lessons can we learn?Sonia Vasconcelos, Renan Moritz Almeida, Aldo Fontes-Pereira, Fernanda Catelani, Karina RochaCS25.3 A preliminary report of the findings from the Reproducibility Project: Cancer biologyElizabeth Iorns, William Gunn26. Research integrity and specific country initiativesCS26.1 Promoting research integrity at CNRS, FranceMichèle Leduc, Lucienne LetellierCS26.2 In pursuit of compliance: is the tail wagging the dog?Cornelia MalherbeCS26.3 Newly established research integrity policies and practices: oversight systems of Japanese research universitiesTakehito Kamata27. Responsible conduct of research and country guidelinesCS27.1 Incentives or guidelines? Promoting responsible research communication through economic incentives or ethical guidelines?Vidar EnebakkCS27.3 Responsible conduct of research: a view from CanadaLynn PenrodCS27.4 The Danish Code of Conduct for Research Integrity: a national initiative to promote research integrity in DenmarkThomas Nørgaard, Charlotte Elverdam28. Behaviour, trust and honestyCS28.1 The reasons behind non-ethical behaviour in academiaYves FassinCS28.2 The psychological profile of the dishonest scholarCynthia FekkenCS28.3 Considering the implications of Dan Ariely’s keynote speech at the 3rd World Conference on Research Integrity in MontréalJamal Adam, Melissa S. AndersonCS28.4 Two large surveys on psychologists’ views on peer review and replicationJelte WichertsBrett Buttliere29. Reporting and publication bias and how to overcome itCS29.1 Data sharing: Experience at two open-access general medical journalsTrish GrovesCS29.2 Overcoming publication bias and selective reporting: completing the published recordDaniel ShanahanCS29.3 The EQUATOR Network: promoting responsible reporting of health research studiesIveta Simera, Shona Kirtley, Eleana Villanueva, Caroline Struthers, Angela MacCarthy, Douglas Altman30. The research environment and its implications for integrityCS30.1 Ranking of scientists: the Russian experienceElena GrebenshchikovaCS30.4 From cradle to grave: research integrity, research misconduct and cultural shiftsBronwyn Greene, Ted RohrPARTNER SYMPOSIAPartner Symposium AOrganized by EQUATOR Network, Enhancing the Quality and Transparency of Health ResearchP1 Can we trust the medical research literature?: Poor reporting and its consequencesIveta SimeraP2 What can BioMed Central do to improve published research?Daniel Shanahan, Stephanie HarrimanP3 What can a "traditional" journal do to improve published research?Trish GrovesP4 Promoting good reporting practice for reliable and usable research papers: EQUATOR Network, reporting guidelines and other initiativesCaroline StruthersPartner Symposium COrganized by ENRIO, the European Network of Research Integrity OfficersP5 Transparency and independence in research integrity investigations in EuropeKrista Varantola, Helga Nolte, Ursa Opara, Torkild Vinther, Elizabeth Wager, Thomas NørgaardPartner Symposium DOrganized by IEEE, the Institute of Electrical and Electronics EngineersRe-educating our author community: IEEE's approach to bibliometric manipulation, plagiarism, and other inappropriate practicesP6 Dealing with plagiarism in the connected world: An Institute of Electrical and Electronics Engineers perspectiveJon RokneP7 Should evaluation of raises, promotion, and research proposals be tied to bibliometric indictors? What the Institute of Electrical and Electronics Engineers is doing to answer this questionGianluca SettiP8 Recommended practices to ensure conference content qualityGordon MacPhersonPartner Symposium EOrganized by the Committee on Freedom and Responsibility in the Conduct of Science of ICSU, the International Council for ScienceResearch assessment and quality in science: perspectives from international science and policy organisationsP9 Challenges for science and the problems of assessing researchEllen HazelkornP10 Research assessment and science policy developmentCarthage SmithP11 Research integrity in South Africa: the value of procedures and processes to global positioningRobert H. McLaughlinP12 Rewards, careers and integrity: perspectives of young scientists from around the worldTatiana Duque MartinsPartner Symposium FOrganized by the Online Resource Center for Ethics Education in Engineering and Science / Center for Engineering, Ethics, and Society of the National Academy of EngineeringP13 Research misconduct: conceptions and policy solutionsTetsuya Tanimoto, Nicholas Steneck, Daniele Fanelli, Ragnvald Kalleberg, Tajammul HusseinPartner Symposium HOrganized by ORI, the Office of Research Integrity; Universitas 21; and the Asia Pacific Research Integrity NetworkP14 International integrity networks: working together to ensure research integrityPing Sun, Ovid Tzeng, Krista Varantola, Susan ZimmermanPartner Symposium IOrganized by COPE, the Committee on Publication EthicsPublication without borders: Ethical challenges in a globalized worldP15 Authorship: credit and responsibility, including issues in large and interdisciplinary studiesRosemary ShinkaiPartner Symposium JOrganized by CITI, the Cooperative Institutional Training InitiativeExperiences on research integrity educational programs in Colombia, Costa Rica and PeruP16 Experiences in PeruRoxana LescanoP17 Experiences in Costa RicaElizabeth HeitmanP18 Experiences in ColumbiaMaria Andrea Rocio del Pilar Contreras NietoPoster Session B: Education, training, promotion and policyPT.01 The missing role of journal editors in promoting responsible researchIbrahim Alorainy, Khalid Al-WazzanPT.02 Honorary authorship in Taiwan: why and who should be in charge?Chien Chou, Sophia Jui-An PanPT.03 Authorship and citation manipulation in academic researchEric Fong, Al WilhitePT.04 Open peer review of research submission at medical journals: experience at BMJ Open and The BMJTrish GrovesPT.05 Exercising authorship: claiming rewards, practicing integrityDésirée Motta-RothPT.07 Medical scientists' views on publication culture: a focus group studyJoeri Tijdink, Yvo SmuldersPoster Session B: Education, training, promotion and policyPT.09 Ethical challenges in post-graduate supervisionLaetus OK LateganPT.10 The effects of viable ethics instruction on international studentsMichael Mumford, Logan Steele, Logan Watts, James Johnson, Shane Connelly, Lee WilliamsPT.11 Does language reflect the quality of research?Gerben ter Riet, Sufia Amini, Lotty Hooft, Halil KilicogluPT.12 Integrity complaints as a strategic tool in policy decision conflictsJanneke van Seters, Herman Eijsackers, Fons Voragen, Akke van der Zijpp and Frans BromPoster Session C: Ethics and integrity intersectionsPT.14 Regulations of informed consent: university-supported research processes and pitfalls in implementationBadaruddin Abbasi, Naif Nasser AlmasoudPT.15 A review of equipoise as a requirement in clinical trialsAdri LabuschagnePT.16 The Research Ethics Library: online resource for research ethics educationJohanne Severinsen, Espen EnghPT.17 Research integrity: the view from King Abdulaziz City for Science and TechnologyDaham Ismail AlaniPT. 18 Meeting global challenges in high-impact publications and research integrity: the case of the Malaysian Palm Oil BoardHJ. Kamaruzaman JusoffPT.19 University faculty perceptions of research practices and misconductAnita Gordon, Helen C. HartonPoster Session D: International perspectivesPT.21 The Commission for Scientific Integrity as a response to research fraudDieter De Bruyn, Stefanie Van der BurghtPT. 22 Are notions of the responsible conduct of research associated with compliance with requirements for research on humans in different disciplinary traditions in Brazil?Karina de Albuquerque Rocha, Sonia Maria Ramos de VasconcelosPT.23 Creating an environment that promotes research integrity: an institutional model of Malawi Liverpool Welcome TrustLimbanazo MatandikaPT.24 How do science policies in Brazil influence user-engaged ecological research?Aline Carolina de Oliveira Machado Prata, Mark William NeffPoster Session E: Perspectives on misconductPT.26 What “causes” scientific misconduct?: Testing major hypotheses by comparing corrected and retracted papersDaniele Fanelli, Rodrigo Costas, Vincent LarivièrePT.27 Perception of academic plagiarism among dentistry studentsDouglas Leonardo Gomes Filho, Diego Oliveira GuedesPT. 28 a few bad apples?: Prevalence, patterns and attitudes towards scientific misconduct among doctoral students at a German university hospitalVolker Bähr, Niklas Keller, Markus Feufel, Nikolas OffenhauserPT. 29 Analysis of retraction notices published by BioMed CentralMaria K. Kowalczuk, Elizabeth C. MoylanPT.31 "He did it" doesn't work: data security, incidents and partnersKatie SpeanburgPoster Session F: Views from the disciplinesPT.32 Robust procedures: a key to generating quality results in drug discoveryMalini Dasgupta, Mariusz Lubomirski, Tom Lavrijssen, David Malwitz, David Gallacher, Anja GillisPT.33 Health promotion: criteria for the design and the integrity of a research projectMaria Betânia de Freitas Marques, Laressa Lima Amâncio, Raphaela Dias Fernandes, Oliveira Patrocínio, and Cláudia Maria Correia Borges RechPT.34 Integrity of academic work from the perspective of students graduating in pharmacy: a brief research studyMaria Betânia de Freitas Marques, Cláudia Maria Correia Borges Rech, Adriana Nascimento SousaPT.35 Research integrity promotion in the Epidemiology and Health Services, the journal of the Brazilian Unified Health SystemLeila Posenato GarciaPT.36 When are clinical trials registered? An analysis of prospective versus retrospective registration of clinical trials published in the BioMed Central series, UKStephanie Harriman, Jigisha PatelPT.37 Maximizing welfare while promoting innovation in drug developmentFarida LadaOther posters that will be displayed but not presented orally:PT.38 Geoethics and the debate on research integrity in geosciencesGiuseppe Di Capua, Silvia PeppoloniPT.39 Introducing the Professionalism and Integrity in Research Program James M. DuBois, John Chibnall, Jillon Van der WallPT.40 Validation of the professional decision-making in research measureJames M. DuBois, John Chibnall, Jillon Van der Wall, Raymond TaitPT.41 General guidelines for research ethicsJacob HolenPT. 42 A national forum for research ethicsAdele Flakke Johannessen, Torunn EllefsenPT.43 Evaluation of integrity in coursework: an approach from the perspective of the higher education professorClaudia Rech, Adriana Sousa, Maria Betânia de Freitas MarquesPT.44 Principles of geoethics and research integrity applied to the European Multidisciplinary Seafloor and Water Column Observatory, a large-scale European environmental research infrastructureSilvia Peppoloni, Giuseppe Di Capua, Laura BeranzoliF1 Focus track on improving research systems: the role of fundersPaulo S.L. Beirão, Susan ZimmermanF2 Focus track on improving research systems: the role of countriesSabine Kleinert, Ana MarusicF3 Focus track on improving research systems: the role of institutionsMelissa S. Anderson, Lex Bouter. (shrink)

The UK NHS National Programme for IT has been criticized for a lack of clinical engagement. This paper uses a soft systems methodology analysis of a case study from the use of electronic systems within a National Health Service Mental Health Trust in the United Kingdom to explore the legal and ethical implications of the failure to develop clinical systems which are fit for purpose.Soft systems methodology was used as a theoretical model both to derive deeper insights (...) into the survey data and suggest how communication between those producing information and those using it, could be improved. Multiple methods were employed which included a postal survey and participant interviews to triangulate the data.The use of SSM reinforced the concept that the national IT programme is based on a ‘hard' systems view and does not take local factors into account. The study found administrative staff to be a crucial link between clinicians and information departments and highlighted the need for a joint-up information strategy and integrated systems.The article concludes with a discussion of the legal and ethical implications of the findings and the lessons for the broader UK national programme. It argues that the failure to deliver systems that are fit for purpose is not value neutral but an ethical issue. (shrink)

Background Moral distress is a complex and challenging issue in the nursing profession that can negatively affect the nurses’ job satisfaction and retention and the quality of patient care. This study focused on describing the resources and constraints, consequences, and interventions of moral distress in nurses. Methods In a literature review, an extensive electronic search was conducted in databases including PubMed, ISI, Scopus as well as Google Scholar search engine using the keywords including “moral distress” and “nurses” to identify (...) resources, constraints, consequences, and interventions about moral distress in nurses, from the earliest records up to 26 December 2020. The required data were extracted from 61 relevant studies by two independent reviewers. Results Resources and constraints in the occurrence of moral distress among nurses can be divided into three general categories including internal factors, clinical factors, and external factors. The consequences of moral distress on nurses and the medical system reduced moral sensitivity, development of psychological and physical health problems, and the intention to leave the profession. The potential effective interventions were the implementation of integrated communication programs, strengthening physician–nurse collaboration, nursing involvement in clinical decision-making and end-of-life issues, social support, using a resiliency bundle, interdisciplinary discussion, and promoting nurses’ ethical and communication skills. Conclusion There are a wide range of resources and constraints impacting moral distress in nurses that could lead to negative consequences. Further studies are necessary to identify, evaluate, and implement a range of potential effective interventions for the management of moral distress in nurses. (shrink)

Experience with electronic communication in ethics committees at two hospitals is reviewed and discussed. A listserver of ethics committee members transmitted a synopsis of the ethics consultation shortly after the consultation was initiated. Committee comments were sometimes incorporated into the recommendations. This input proved to be most useful in unusual cases where additional, diverse inputs were informative. Efforts to ensure confidentiality are vital to this approach. They include not naming the patient in the e-mail, requiring a password for (...) access to the listserver, and possibly encryption. How this electronic communication process alters group interactions in ethics committees is a fruitful area for future investigation. (shrink)

The considerable attention to financial interests in clinical research has focused mostly on academic medical centers, even though the majority of clinical research is conducted in community practice settings. To fill this gap, this article maps the practices and policies in 73 community hospitals and several hundred specialized facilities around the country for reviewing clinical investigators’ financial relationships with research sponsors. Community hospitals face a substantially different mix of issues than academic medical centers do because their physician (...) researchers are usually not employees, and more of their studies are later-phase, multicenter trials. Accordingly, community physicians stand to benefit personally from per capita payments, but they tend to have less direct influence over research findings when compared with their academic peers. These and other contrasts require separate guidance for community-based organizations that takes into account their particular needs, circumstances, and institutional capacities. (shrink)

Evolving practice requires peer review of clinical ethics (CE) consultation for quality assessment and improvement. Many institutions have identified the chart note as the basis for this process, but to our knowledge, electronic health record (EHR) systems are not necessarily designed to easily include CE consultation notes. This article provides a framework for the inclusion of CE consultation notes into the formal EHR, describing a developed system in the Epic EHR that allows for the elaborated electronic notation (...) of the CE chart note. The implementation of the “meaningful use” criteria for EHR, mandated by the Health Information Technology for Economic and Clinical Health (HITECH) Act of 2009, requires that health professionals meet certain standards for quality, efficiency, and safety, all of which overlap with the goals of standardization, peer review, and quality improvement within CE consultation. (shrink)

Although a large number of literatures have explored the relationship between electronic communication during nonwork time and individual perception and behavior under the Western culture background, we still have some limitations on this topic under the cultural background of collectivism, dedication and “Guanxi” in China. Different from Western organizations, Chinese employees tend to put work first and are more inclusive of handling work tasks during nonwork time. This type of communication during nonwork time can significantly affect employees’ (...) cognition, emotion and behavior. From the perspective of Job Demands-Resources theory, this study constructs a double-edged model between electronic communication during nonwork time and employee withdrawal behavior. Sample data were collected from 516 employees with clear working time boundaries in China. The results indicate that electronic communication during nonwork time has a U-shaped effect on employee withdrawal behavior and an inverted U-shaped effect on employee’s cognition, namely job engagement. Job engagement plays a mediating role between them. Moreover, regulatory emotional self-efficacy has a moderating effect on the relationship between electronic communication during nonwork time and job engagement. These findings not only provide theoretical and practical implications for managers and employees on how to reduce withdrawal behaviors, but also advance our understanding of electronic communication during nonwork time in Chinese cultural context. (shrink)

The practice and development of modern medicine requires large amounts of data, particularly in the domain of cancer. The future of personalized medicine lies neither with “genomic medicine” nor with “precision medicine”, but with “data medicine”. The establishment of this DM has required far-reaching changes, to establish four essential elements connecting patients and doctors: biobanks, databases, bioinformatic platforms and genomic platforms. The “transformation” of scientific research areas, such as genetics, bioinformatics and biostatistics, into clinical specialties has generated a new (...) vision of care. Molecular tumor boards are one response to these changes and are now providing better access to next-generation sequencing and new cancer treatments to patients with inoperable or metastatic cancers, and those for whom the usual treatment has failed. However, MTB face a crucial ethical challenge: maintaining and improving the trust of patients, clinicians, researchers and industry in academic medical centers supported by private or public funding rather than providing genetic data directly to private companies. We believe that, in this era of DM, appropriate modern digital communication networks will be required to maintain this trust and to improve the organization and effectiveness of the system. There is, therefore, a need to reconsider the form and content of informed consent documents at all academic medical centers and to introduce dynamic and electronic informed consent. (shrink)