There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient’s rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. healthcare (...) professionals, regulators and policy makers. We used a qualitative design to examine Swiss healthcare stakeholders’ experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries’ patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients’ rights and citizens’ involvement on the other. The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data. (shrink)

BACKGROUND: There is a growing interest in aggregating more biomedical and patient data into large health data sets for research and public benefits. However, collecting and processing patient data raises new ethical issues regarding patient's rights, social justice and trust in public institutions. The aim of this empirical study is to gain an in-depth understanding of the awareness of possible ethical risks and corresponding obligations among those who are involved in projects using patient data, i.e. (...) healthcare professionals, regulators and policy makers. METHODS: We used a qualitative design to examine Swiss healthcare stakeholders' experiences and perceptions of ethical challenges with regard to patient data in real-life settings where clinical registries are sponsored, created and/or used. A semi-structured interview was carried out with 22 participants (11 physicians, 7 policy-makers, 4 ethical committee members) between July 2014 and January 2015. The interviews were audio-recorded, transcribed, coded and analysed using a thematic method derived from Grounded Theory. RESULTS: All interviewees were concerned as a matter of priority with the needs of legal and operating norms for the collection and use of data, whereas less interest was shown in issues regarding patient agency, the need for reciprocity, and shared governance in the management and use of clinical registries' patient data. This observed asymmetry highlights a possible tension between public and research interests on the one hand, and the recognition of patients' rights and citizens' involvement on the other. CONCLUSIONS: The advocation of further health-related data sharing on the grounds of research and public interest, without due regard for the perspective of patients and donors, could run the risk of fostering distrust towards healthcare data collections. Ultimately, this could diminish the expected social benefits. However, rather than setting patient rights against public interest, new ethical approaches could strengthen both concurrently. On a normative level, this study thus provides material from which to develop further ethical reflection towards a more cooperative approach involving patients and citizens in the governance of their health-related big data. (shrink)

Pain management has improved in the past few decades. Opioid analgesics have become the mainstay in the treatment of cancer pain whilst inter-disciplinary pain management programmes are the generally accepted approach to chronic pain of non-malignant origin. Recently some pain specialists have advocated the use of opioids in the long-term management of non-cancer pain. This has raised some fundamental questions about the purpose of pain management. Is it best to opt for maximum pain relief and comfort, or should one emphasise (...) function and activity as higher priorities? Will the use of opioids create more autonomy for pain sufferers or will this add handicaps to lives which are already limited? Until more clinical outcome data are available we advocate caution in the use of opioid analgesia. Such caution can, and does, raise questions about the rights of the patient and the rights of the prescriber in a context where the facts do not point to a clear course of action. (shrink)

BackgroundThe advent of learning healthcare systems (LHSs) raises an important implementation challenge concerning how to request and manage consent to support secondary use of data in learning cycles, particularly research activities. Current consent models in Quebec were not established with the context of LHSs in mind and do not support the agility and transparency required to obtain consent from all involved, especially the citizens. Therefore, a new approach to consent is needed. Previous work identified the meta-consent model as a (...) promising alternative to fulfill the requirements of LHSs, particularly large-scale deployments. We elicited the public’s attitude toward the meta-consent model to evaluate if the model could be understood by the citizens and would be deemed acceptable to prepare for its possible implementation in Quebec.MethodsEight focus groups, with a total of 63 members of the general public from various backgrounds were conducted in Quebec, Canada, in 2019. Explicit attention was given to literacy levels, language spoken at home and rural vs urban settings. We assessed attitudes, concerns and facilitators regarding key components of the meta-consent model: predefined categories to personalized consent requests, a dynamic web-based infrastructure to record meta-consent, and default settings. To analyse the discussions, a thematic content analysis was performed using a qualitative software.ResultsOur findings showed that participants were supportive of this new approach of consent as it promotes transparency and offers autonomy for the management of their health data. Key facilitators were identified to be considered in the implementation of a meta-consent model in the Quebec LHSs: information and transparency, awareness campaigns, development of educational tools, collaboration of front-line healthcare professionals, default settings deemed acceptable by the society as well as close partnerships with recognized and trusted institutions.ConclusionsThis qualitative study reveals the openness of a sample of the Quebec population regarding the meta-consent model for secondary use of health data for research. This first exploratory study conducted with the public is an important step in guiding decision-makers in the next phases of implementing the various strategies to support access and use of health data in Quebec. (shrink)

We propose a new approach for tracing value change. Value change may lead to a mismatch between current value priorities in society and the values for which technologies were designed in the past, such as energy technologies based on fossil fuels, which were developed when sustainability was not considered a very important value. Better anticipating value change is essential to avoid a lack of social acceptance and moral acceptability of technologies. While value change can be studied historically and qualitatively, we (...) propose a more quantitative approach that uses large text corpora. It uses probabilistic topic models, which allow us to trace values that are latent. We demonstrate the approach for five types of value change in technology. Our approach is useful for testing hypotheses about value change, such as verifying whether value change has occurred and identifying patterns of value change. The approach can be used to trace value change for various technologies and text corpora, including scientific articles, newspaper articles, and policy documents. (shrink)

Knowledge about aspects that influence recovery and adaptation in the postacute phase of disabling health events is key to understanding how best to provide appropriate rehabilitation and health services. Qualitative longitudinal research makes it possible to look for patterns, key time points and critical moments that could be vital for interventions and supports. However, strategies that support robust data management and analysis for longitudinal qualitative research in health‐care are not well documented in the literature. This article reviews (...) three challenges encountered in a large longitudinal qualitative descriptive study about experiences of recovery and adaptation after traumatic brain injury in New Zealand, and the strategies and technologies used to address them. These were (i) tracking coding and analysis decisions during an extended analysis period; (ii) navigating interpretations over time and in response to new data; and (iii) exploiting data volume and complexity. Concept mapping during coding review, a considered combination of information technologies, employing both cross‐sectional and narrative analysis, and an expectation that subanalyses would be required for key topics helped us manage the study in a way that facilitated useful and novel insights. These strategies could be applied in other qualitative longitudinal studies in healthcare inquiry to optimise data analysis and stimulate important insights. (shrink)

Court judgments contain valuable information on how statutory laws and past court precedents are interpreted and how the interdependence structure among them evolves in the courtroom. Data-mining the evolving structure of such customs and norms that reflect myriad social values from a large-scale court judgment corpus is an essential task from both the academic and industrial perspectives. In this paper, using data from approximately 110,000 court judgments from Japan spanning the period 1998–2018 from the district to the (...) supreme court level, we propose two tasks that grasp such a structure from court judgments and highlight the strengths and weaknesses of major machine learning models. One is a prediction task based on masked language modeling that connects textual information to legal codes and past court precedents. Another is a dynamic link prediction task where we predict the hidden interdependence structure in the law. We make quantitative and qualitative comparisons among major machine learning models to obtain insights for future developments. (shrink)

Abduction, deduction and induction describe forms of reasoning. Deduction and induction are discussed in the nursing literature. However, abduction has been largely neglected by nurse scholars. In this paper it is proposed that abduction may play a part in qualitative data analysis – specifically, in the identification of themes, codes, and categories. Abduction is not, in research, restricted to or associated with any particular methodology. Nevertheless, situating abduction in qualitative research facilitates the identification of three interlinked issues. (...) First, it is suggested that abductively derived claims require support from deductive and inductively sourced evidence if they are to ‘hold’ and, yet, in qualitative research this is clearly problematic. Second, difficulties in choosing between alternative plausible hypotheses are explored through an examination of the ‘generality problem’. Third, the role of background and auxiliary theories in adjudicating between hypothesis options is discussed. It is argued that if qualitative researchers utilize abductive inference in the manner suggested, then the peculiarly fallible nature of abduction must be acknowledged and, in consequence, the action guiding potential of qualitative research findings is compromised. (shrink)

BackgroundA growing number of studies show the potential of loyalty card data for use in health research. However, research into public perceptions of using this data is limited. This study aimed to investigate public attitudes towards donating loyalty card data for academic health research, and the safeguards the public would want to see implemented. The way in which participant attitudes varied according to whether loyalty card data would be used for either cancer or COVID-19 research was (...) also examined.MethodsParticipants were recruited via Prolific Academic to take part in semi-structured telephone interviews, with questions focused on data sharing related to either COVID-19 or ovarian/bowel cancer as the proposed health condition to be researched. Content analysis was used to identify sub-themes corresponding to the two a priori themes, attitudes and safeguards.ResultsParticipant attitudes were found to fall into two categories, either rational or emotional. Under rational, most participants were in favour of sharing loyalty card data. Support of health research was seen as an important reason to donate such data, with loyalty card logs being considered as already within the public domain. With increased understanding of research purpose, participants expressed higher willingness to donate data. Within the emotional category, participants shared fears about revealing location information and of third parties obtaining their data. With regards to safeguards, participants described the importance of anonymisation and the level of data detail; the control, convenience and choice they desired in sharing data; and the need for transparency and data security. The change in hypothetical purpose of the data sharing, from Covid-19 to cancer research, had no impact on participants’ decision to donate, although did affect their understanding of how loyalty card data could be used.ConclusionsBased on interviews with the public, this study contributes recommendations for those researchers and the wider policy community seeking to obtain loyalty card data for health research. Whilst participants were largely in favour of donating loyalty card data for academic health research, information, choice and appropriate safeguards are all exposed as prerequisites upon which decisions are made. (shrink)

In this qualitative study, we aimed to identify and compare the ethical problems perceived by physicians and nurses in intensive care units at Baskent University hospitals in Turkey. A total of 21 physicians and 22 nurses were asked to describe ethical problems that they frequently encounter in their practice. The data were analyzed using an interactive model. The core problem for both physicians and nurses was end-of-life decisions (first level). In this category, physicians were most frequently concerned with (...) euthanasia while nurses were more concerned with do-not-resuscitate orders (second level). At the third level, we saw that almost all of the participants’ responses related to negative perceptions about euthanasia. Communication and hierarchical problems were the second most reported main category. Nurses were more likely to cite problems with hierarchy than physicians. At the third level, a large percentage of nurses described communication problems with authority and hierarchical problems with physicians. In the same category, physicians were most often concerned with communication problems with patients’ relatives. The ethical problems were reported at different frequencies by physicians and nurses. We asked the participants about ethical decision-making styles. The results show that nurses and physicians do not follow a systematic pattern of ethical decision making. (shrink)

Both the theory that traumatic childhood memories can be repressed, and the reliability of the techniques used to retrieve these memories are challenged in this paper. Questions are raised about the robustness of the theory and the literature that purports to provide scientific evidence for it. Evidence to this end is provided by the demographic and qualitative results of a research study conducted by the authors which surveyed New Zealand families in which one member had accused another (or others) (...) of sexual abuse on the basis of recovered memories. It is shown that a number of these allegations involve very low probability events. Since memory repression theory is not currently scientifically substantiated it is argued that care needs to be taken in the mental health, legal and insurance compensation arenas. Memories recalled during therapy may be treated as metaphorical but, in the absence of corroborative evidence, should not be considered factually true. Clinicians who wish to use memory recovery techniques should inform patients of their experimental and controversial nature, point out potential adverse effects, and obtain consent before proceeding. (shrink)

Both the theory that traumatic childhood memories can be repressed, and the reliability of the techniques used to retrieve these memories are challenged in this paper. Questions are raised about the robustness of the theory and the literature that purports to provide scientific evidence for it. Evidence to this end is provided by the demographic and qualitative results of a research study conducted by the authors which surveyed New Zealand families in which one member had accused another (or others) (...) of sexual abuse on the basis of recovered memories. It is shown that a number of these allegations involve very low probability events. Since memory repression theory is not currently scientifically substantiated it is argued that care needs to be taken in the mental health, legal and insurance compensation arenas. Memories recalled during therapy may be treated as metaphorical but, in the absence of corroborative evidence, should not be considered factually true. Clinicians who wish to use memory recovery techniques should inform patients of their experimental and controversial nature, point out potential adverse effects, and obtain consent before proceeding. (shrink)

Qualitative researchers, particularly those researching business and society topics, should embrace artificial intelligence (AI) to conduct efficient, explicatory, and equitable research but also exercise caution to avoid its pitfalls.

Biomedical research increasingly relies on long-term studies involving use and re-use of biological samples and data stored in large repositories or “biobanks” over lengthy periods, often raising questions about whether and when a re-consenting process should be activated. We sought to investigate the views on re-consent of participants in a longitudinal biobank. We conducted a qualitative study involving interviews with 24 people who were participating in a longitudinal biobank. Their views were elicited using a semi-structured interview schedule (...) and scenarios based on a hypothetical biobank. Data analysis was based on the constant comparative method. What participants identified as requiring new consent was not a straightforward matter predictable by algorithms about the scope of the consent, but instead was contingent. They assessed whether proposed new research implied a fundamental alteration in the underlying character of the biobank and whether specific projects were within the scope of the original consent. What mattered most to them was that the cooperative bargain into which they had entered was maintained in good faith. They saw re-consent as one important safeguard in this bargain. In determining what required re-consent, they deployed two logics. First, they used a logic of boundaries, where they sought to detect any possible rupture with their existing framework of cooperation. Second, they used a logic of risk, where they assessed proposed research for any potential threats for them personally or the research endeavour. When they judged that a need for re-consent had been activated, participants saw the process as way of re-actualising and renewing the cooperative bargain. Participants’ perceptions of research as a process of mutual co-operation between volunteer and researcher were fundamental to their views on consent. Consenting arrangements for biobanks should respect the cooperative values that are important to participants, recognise the two logics used by research volunteers, and avoid rigidity. Agility may be favoured by tiered consent combined with strong oversight mechanisms; this approach requires evaluation. (shrink)

Qualitative description of the movement of objects can be very important when there are large quantity of data or incomplete information, such as in positioning technologies and movement of robots. We present a first step in the combination of fuzzy qualitative reasoning and quantitative data obtained by human interaction and external devices as GPS, in order to update and correct the qualitative information. We consider a Propositional Dynamic Logic which deals with qualitative velocity (...) and enables us to represent some reasoning tasks about qualitative properties. The use of logic provides a general framework which improves the capacity of reasoning. In this way, we can infer additional information by using axioms and the logic apparatus. In this paper we present sound and complete relational dual tableau that can be used for verification of validity of formulas of the logic in question. (shrink)

Both the theory that traumatic childhood memories can be repressed, and the reliability of the techniques used to retrieve these memories are challenged in this paper. Questions are raised about the robustness of the theory and the literature that purports to provide scientific evidence for it. Evidence to this end is provided by the demographic and qualitative results of a research study conducted by the authors which surveyed New Zealand families in which one member had accused another of sexual (...) abuse on the basis of recovered memories. It is shown that a number of these allegations involve very low probability events. Since memory repression theory is not currently scientifically substantiated it is argued that care needs to be taken in the mental health, legal and insurance compensation arenas. Memories recalled during therapy may be treated as metaphorical but, in the absence of corroborative evidence, should not be considered factually true. Clinicians who wish to use memory recovery techniques should inform patients of their experimental and controversial nature, point out potential adverse effects, and obtain consent before proceeding. (shrink)

Summary Background Self-binding directives instruct clinicians to overrule treatment refusal during future severe episodes of illness. These directives are promoted as having potential to increase autonomy for individuals with severe episodic mental illness. Although lived experience is central to their creation, service users’ views on self-binding directives have not been investigated substantially. This study aimed to explore whether reasons for endorsement, ambivalence, or rejection given by service users with bipolar disorder can address concerns regarding self-binding directives, decision-making capacity, and human (...) rights. Methods This study used qualitative data from an internet-based survey distributed to the mailing list of the UK charity Bipolar UK, which contained multiple closed and open questions on advance decision-making in bipolar disorder. Quantitative analysis of a closed question about self-binding directives had already demonstrated endorsement amongst a very high proportion of participants with bipolar disorder who completed the survey. We conducted thematic analysis of responses from those participants who answered a subsequent open question about reasons for their view. Research was co-produced within a multi-disciplinary team, with clinical, legal, and ethical expertise, and lived experience of bipolar disorder. Ideas and methodologies associated with all these areas of expertise were used in the analysis of these reasons and to gain insight into the thoughts of individuals with bipolar disorder about self-binding directives and associated issues. Findings Between Oct 23 and Dec 5, 2017, 932 individuals with a self-reported clinical diagnosis of bipolar disorder completed the internet survey, with 565 (154 men; 400 women; 11 transgender or other) providing free text answers to the open question. A large majority of respondents endorsed self-binding directives, nearly all describing a determinate shift to types of distorted thinking and decision-making when unwell as their key justification. Responses indicating ambivalence were dominated by logistical concerns about the drafting and implementation of self-binding directives, while those who rejected self-binding directives also cited logistical concerns, validity of their thinking when unwell, and potential contravention of human rights. Interpretation This study is, to our knowledge, the first large study of reasons why mental health service users might endorse or reject the use of self-binding directives. The findings provide empirical support for introducing self-binding directives into mental health advance decision-making practice and policy and may help to address enduring ethical concerns surrounding possible implementation of the directive while a person retains decision-making capacity. The opinions expressed here in responses given by multiple service users with bipolar disorder challenge a prominent view within international disability rights debates that involuntary treatment and recognition of impaired mental capacity constitute inherent human rights violations. Funding The Wellcome Trust . (shrink)

We respond to several important and valid concerns about our study (“The Prevalence of Folk Dualism in Early China,”Cognitive Science 35: 997–1007) by Klein and Klein, defending our interpretation of our data. We also argue that, despite the undeniable challenges involved in qualitatively coding texts from ancient cultures, the standard tools used throughout the cognitive sciences—large quantities of data, coders as blind to the hypothesis as possible, intercoder reliability measures, and statistical analysis—allow the noise of randomly distributed (...) interpretative differences to be distinguished from the signal of genuine historical patterns. (shrink)

Large data-intensive health research programmes benefit from collaboration amongst researchers who may be located in different institutions and international contexts. However, complexities in navigating privacy frameworks and data protection laws across various jurisdictions pose significant challenges to researchers seeking to share or transfer data outside of institutional boundaries. Research on the awareness of data protection and privacy laws amongst stakeholders is limited. Our qualitative study, drawn from a larger project in Singapore, revealed insights into (...) stakeholders’ perceptions of the role of law in cross-national health data research. Stakeholders in our study demonstrated a range of perceptions regarding the role of data protection law in governing the collection and transfer of health data for research. The main criticisms included inadequate legal protection to data and lack of uniformed data protection standards. Despite these criticisms, participants recognised the importance of data protection law in supporting cross-border data transfers and proposed measures to improve perceived limitations of existing laws. These measures include strengthening existing legal framework, establishing contractual agreements and imposing severe punishments for data misuse. (shrink)

The article examines the construction of “Big Data” in media discourse. Rather than asking what Big Data really is or is not, it deals with the discursive work that goes into making Big Data a socially relevant phenomenon and problem in the first place. It starts from the idea that in modern societies the public understanding of technology is largely driven by a media-based discourse, which is a key arena for circulating collectively shared meanings. This largely ignored (...) dimension invites us to appreciate what matters to journalists and the wider public when discussing the collection and use of data. To this end, our study looks at how Big Data is framed in terms of the governmental use of large datasets as a contentious area of data application. It reconstructs the perspectives surrounding the so-called “Handygate” affair in Germany based on broadcast news and social media conversations. In this incident, state authorities collected and analyzed mobile phone data through a radio cell query during events to commemorate the Dresden bombing in February 2011. We employ a qualitative discourse analysis that allows us to reconstruct the conceptualizations of Big Data as a proper instrument for criminal prosecution or an unjustified infringement of constitutional rights. (shrink)

Data analytics and data-driven approaches in Machine Learning are now among the most hailed computing technologies in many industrial domains. One major application is predictive analytics, which is used to predict sensitive attributes, future behavior, or cost, risk and utility functions associated with target groups or individuals based on large sets of behavioral and usage data. This paper stresses the severe ethical and data protection implications of predictive analytics if it is used to predict sensitive (...) information about single individuals or treat individuals differently based on the data many unrelated individuals provided. To tackle these concerns in an applied ethics, first, the paper introduces the concept of “predictive privacy” to formulate an ethical principle protecting individuals and groups against differential treatment based on Machine Learning and Big Data analytics. Secondly, it analyses the typical data processing cycle of predictive systems to provide a step-by-step discussion of ethical implications, locating occurrences of predictive privacy violations. Thirdly, the paper sheds light on what is qualitatively new in the way predictive analytics challenges ethical principles such as human dignity and the (liberal) notion of individual privacy. These new challenges arise when predictive systems transform statistical inferences, which provide knowledge about the cohort of training data donors, into individual predictions, thereby crossing what I call the “prediction gap”. Finally, the paper summarizes that data protection in the age of predictive analytics is a collective matter as we face situations where an individual’s (or group’s) privacy is violated using dataotherindividuals provide about themselves, possibly even anonymously. (shrink)

The comparison of growth, whether it is between different strains or under different growth conditions, is a classic microbiological technique that can provide genetic, epigenetic, cell biological, and chemical biological information depending on how the assay is used. When employing solid growth media, this technique is limited by being largely qualitative and low throughput. Collecting data in the form of growth curves, especially automated data collection in multi‐well plates, circumvents these issues. However, the growth curves themselves are (...) subject to stochastic variation in several variables, most notably the length of the lag phase, the doubling rate, and the maximum expansion of the culture. Thus, growth curves are indicative of trends but cannot always be conveniently averaged and statistically compared. Here, we summarize a simple method to compile growth curve data into a quantitative format that is amenable to statistical comparisons and easy to graph and display. (shrink)

Background: Islam and Muslims are underrepresented in the medical literature and the influence of physician’s cultural beliefs and religious values upon the clinical encounter has been understudied. Objective: To elicit the perceived influence of Islam upon the practice patterns of immigrant Muslim physicians in the USA. Design: Ten face-to-face, in-depth, semistructured interviews with Muslim physicians from various backgrounds and specialties trained outside the USA and practising within the the country. Data were analysed according to the conventions of qualitative (...) research using a modified grounded-theory approach. Results: There were a variety of views on the role of Islam in medical practice. Several themes emerged from our interviews: (1) a trend to view Islam as enhancing virtuous professional behaviour; (2) the perception of Islam as influencing the scope of medical practice through setting boundaries on career choices, defining acceptable medical procedures and shaping social interactions with physician peers; (3) a perceived need for Islamic religious experts within Islamic medical ethical deliberation. Limitations: This is a pilot study intended to yield themes and hypotheses for further investigation and is not meant to fully characterise Muslim physicians at large. Conclusions: Immigrant Muslim physicians practising within the USA perceive Islam to play a variable role within their clinical practice, from influencing interpersonal relations and character development to affecting specialty choice and procedures performed. Areas of ethical challenges identified include catering to populations with lifestyles at odds with Islamic teachings, end-of-life care and maintaining a faith identity within the culture of medicine. Further study of the interplay between Islam and Muslim medical practice and the manner and degree to which Islamic values and law inform ethical decision-making is needed. (shrink)

BackgroundOrgan donation following brain death has become an important way of supplying organs for transplantation in many countries. This practice is less common in Iran for different reasons. Therefore, this study aims to explore the obstacles to organ donation following brain death in Iran.MethodsThis qualitative research was conducted following the conventional content analysis method. The study population consisted of individuals with a history of brain death among their blood relatives who refused to donate the organs. Snowball sampling was employed (...) to select the participants. In-depth semi-structured interviews were conducted for data gathering. Theoretical saturation was achieved through 20 interviews. Data analysis was done following the steps proposed by Graneheim and Lundman. Lincoln and Guba’s criteria were used to ensure data rigor and transferability of the study.ResultsData analyses revealed 185 codes, 23 categories, and seven themes including, poor knowledge about brain death and organ transplantation from a dead body, cultural beliefs, religious beliefs, deficiencies of requesting process, fear and concerns, inability to make a decision, and social learning.ConclusionThere were several factors in families’ reluctance to donate organs of a brain-dead patient. Through improving knowledge and changing cultural beliefs in society, it is possible to take large steps towards promoting organ donation from brain-dead patients. (shrink)

Australia, along with other countries, has introduced New Public Management (NPM) into public sector hospitals in an effort to contain healthcare costs. NPM is associated with outsourcing of service provision, the meeting of government performance indicators, workforce flexibility and rationing of resources. This study explores the impact of rationing of staffing and other resources upon delivery of care outside of business hours. Data was collected through semistructured interviews conducted with 21 nurses working in 2 large Australian metropolitan hospitals. (...) Participants identified four strategies associated with NPM which add to workload after‐hours and impacted on the capacity to deliver nursing care. These were functional flexibility, vertical substitution of staff, meeting externally established performance indicators and outsourcing. We conclude that cost containment alongside of the meeting of performance indicators has extended work traditionally performed during business hours beyond those hours when less staffing and material resources are available. This adds to nursing workload and potentially contributes to incomplete nursing care. (shrink)

Predictive uses of data are becoming widespread in institutional settings as actors seek to anticipate people and their activities. Predictive modeling is increasingly the subject of scholarly and public criticism. Less common, however, is scrutiny directed at the data that inform predictive models beyond concerns about homogenous training data or general epistemological critiques of data. In this paper, I draw from a qualitative case study set in higher education in the United States to investigate the (...) making of data. Data analytics projects at universities have become more pervasive and intensive to better understand and anticipate undergraduate student bodies. Drawing from 12 months of ethnographic research at a large public university, I analyze the ways data personnel at the institution—data scientists, administrators, and programmers—sort student data into “attributes” and “behaviors,” where “attributes” are demographic data that students “can’t change.” “Behaviors,” in contrast, are data defined as reflective of what students can choose: attending and paying attention in class, studying on campus, among other data which personnel categorize as what students have control over. This discursive split enables the institution nudge students to make responsible choices according to behavior data that correlate with success in the predictive model. In discussing how personnel type, sort, stabilize, and nudge on behavior data, this paper examines the contingencies of data making processes and implications for the application of student data. (shrink)

A general conceptual framework for large-scale neocortical dynamics based on data from many laboratories is applied to a variety of experimental designs, spatial scales, and brain states. Partly distinct, but interacting local processes (e.g., neural networks) arise from functional segregation. Global processes arise from functional integration and can facilitate (top down) synchronous activity in remote cell groups that function simultaneously at several different spatial scales. Simultaneous local processes may help drive (bottom up) macroscopic global dynamics observed with electroencephalography (...) (EEG) or magnetoencephalography (MEG). A local/global dynamic theory that is consistent with EEG data and the proposed conceptual framework is outlined. This theory is neutral about properties of neural networks embedded in macroscopic fields, but its global component makes several qualitative and semiquantitative predictions about EEG measures of traveling and standing wave phenomena. A more general “metatheory” suggests what large-scale quantitative theories of neocortical dynamics may be like when more accurate treatment of local and nonlinear effects is achieved. The theory describes the dynamics of excitatory and inhibitory synaptic action fields. EEG and MEG provide large-scale estimates of modulation of these synaptic fields around background levels. Brain states are determined by neuromodulatory control parameters. Purely local states are dominated by local feedback gains and rise and decay times of postsynaptic potentials. Dominant local frequencies vary with brain region. Other states are purely global, with moderate to high coherence over large distances. Multiple global mode frequencies arise from a combination of delays in corticocortical axons and neocortical boundary conditions. Global frequencies are identical in all cortical regions, but most states involve dynamic interactions between local networks and the global system. EEG frequencies may involve a “matching” of local resonant frequencies with one or more of the many, closely spaced global frequencies. Key Words: binding problem; cell assemblies; coherence; EEG; limit cycles; neocortical dynamics; pacemakers; phase locking; spatial scale; standing waves; synchronization. Footnotes1 The relationship between the synaptic action fields proposed in the target article and cell assemblies is clarified with Figure R1 (p. 416) of the Response. (This figure was not available to Commentators. (shrink)

After the COVID-19 outbreak, the health status of the general population has suffered a huge threat, and the health system has also encountered great challenges. As critical members of human capital in the health sector, medical students with specialized knowledge and skills have positively fought against the epidemic by providing volunteer services that boosted the resilience of the health system. Although volunteer behavior is associated with individual internal motivation, there is sparse evidence on this relationship among medical students, especially regarding (...) potential mechanisms. Therefore, this study had two main objectives: to examine the influence of prosocial motivation of medical students on their VB; and to verify the chain-mediating role of calling and vocation as well as social responsibility in the relationship between PM and VB. Study I: a total of 2454 Chinese full-time medical students were invited to complete an online survey. Data analysis was performed using descriptive statistics, Pearson’s correlation coefficient, and multiple linear regression analysis. The results demonstrated that PM significantly affected VB in medical students ; CV as well as SR chain-mediated the relationship between PM and VB. PM promoted the formation of SR by positively evoking CV of medical students, further resulting in increased VB. Study II: A 28 person qualitative interview was conducted. Qualitative data are added to reduce the limitations of online questionnaires. At the same time, we can also critically study the VB of Chinese medical students during COVID-19. The results showed that there were various reasons for medical students to volunteer in the process of fighting against COVID-19, and the experience of volunteer service and the impact on their future life were different. Lastly, the current findings suggest that fostering volunteerism among medical students requires the joint effort of the government, non-profit organizations, and medical colleges. (shrink)

Simple models for the evolution of qualitative multistate traits are considered, in which the traits are permitted to evolve in time-dependent versus speciation-dependent fashion. Of particular interest are the means and variances of distances for these traits in evolutionary phylads characterized by different rates of speciation, when alternative characters are neutral with respect to fitness, and when the total number of observable characters is limited to small values. As attainable character states are increasingly restricted, mean distance (D) in a (...) phylad decreases, regardless of whether evolution is a function of time or of rate of speciation. The ratio of mean distances in species-rich and species-poor phylads of comparable evolutionary age (DR/DP) remains near one when differentiation is proportional to time, even when attainable character states are severely restricted. DR/DP also nears one as a result of restricting character states when differentiation is proportional to rate of speciation, but the effect is not severe unless the number of character states is very small and the probability of change per speciation very large. These and other results are discussed with reference to available data sets on qualitative multistate traits. (shrink)

Background: Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives. Methods: We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour travelling distance by (...) car from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo. Results: This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change. Conclusions: The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is undermined, there are long lasting negative consequences. The social fabric of rural life is frayed. These findings offer one way to re-conceptualize healthcare decision making through consideration of critical values to support ethically good palliative care in rural settings. (shrink)

BackgroundBiobanking biospecimens and consent are common practice in paediatric research. We need to explore children and young people’s (CYP) knowledge and perspectives around the use of and consent to biobanking. This will ensure meaningful informed consent can be obtained and improve current consent procedures.MethodsWe designed a survey, in co-production with CYP, collecting demographic data, views on biobanking, and consent using three scenarios: 1) prospective consent, 2) deferred consent, and 3) reconsent and assent at age of capacity. The survey was (...) disseminated via the Young Person’s Advisory Group North England (YPAGne) and participating CYP’s secondary schools. Data were analysed using a qualitative thematic approach by three independent reviewers (including CYP) to identify common themes. Data triangulation occurred independently by a fourth reviewer.ResultsOne hundred two CYP completed the survey. Most were between 16–18 years (63.7%, N = 65) and female (66.7%, N = 68). 72.3% had no prior knowledge of biobanking (N = 73).Acceptability of prospective consent for biobanking was high (91.2%, N = 93) with common themes: ‘altruism’, ‘potential benefits outweigh individual risk’, 'frugality', and ‘(in)convenience’.Deferred consent was also deemed acceptable in the large majority (84.3%, N = 86), with common themes: ‘altruism’, ‘body integrity’ and ‘sample frugality’. 76.5% preferred to reconsent when cognitively mature enough to give assent (N = 78), even if parental consent was previously in place. 79.2% wanted to be informed if their biobanked biospecimen is reused (N = 80).ConclusionProspective and deferred consent acceptability for biobanking is high among CYP in the UK. Altruism, frugality, body integrity, and privacy are the most important themes. Clear communication and justification are paramount to obtain consent. Any CYP with capacity should be part of the consenting procedure, if possible. (shrink)

The COVID‐19 pandemic has placed extraordinary stress on frontline healthcare providers as they encounter significant challenges and risks while caring for patients at the bedside. This study used qualitative research methods to explore nurses and respiratory therapists' experiences providing direct care to COVID‐19 patients during the first surge of the pandemic at a large academic medical center in the Northeastern United States. The purpose of this study was to explore their experiences as related to changes in staffing models (...) and to consider needs for additional support. Twenty semi‐structured interviews were conducted with sixteen nurses and four respiratory therapists via Zoom or by telephone. Interviews were transcribed verbatim, identifiers were removed, and data was coded and analyzed thematically. Five major themes characterize providers' experiences: a fear of the unknown, concerns about infection, perceived professional unpreparedness, isolation and alienation, and inescapable stress and distress. This manuscript analyzes the relationship between these themes and the concept of moral distress and finds that some, but not all, of the challenges that providers faced during this time align with previous definitions of the concept. This points to the possibility of broadening the conceptual parameters of moral distress to account for providers' experiences of treating patients with novel illnesses while encountering institutional and clinical challenges. (shrink)

Background: Although attention to healthcare ethics in rural areas has increased, specific focus on rural palliative care is still largely under-studied and under-theorized. The purpose of this study was to gain a deeper understanding of the values informing good palliative care from rural individuals' perspectives. Methods: We conducted a qualitative ethnographic study in four rural communities in Western Canada. Each community had a population of 10, 000 or less and was located at least a three hour travelling distance by (...) car from a specialist palliative care treatment centre. Data were collected over a 2-year period and included 95 interviews, 51 days of field work and 74 hours of direct participant observation where the researchers accompanied rural healthcare providers. Data were analyzed inductively to identify the most prevalent thematic values, and then coded using NVivo. Results: This study illuminated the core values of knowing and being known, being present and available, and community and mutuality that provide the foundation for ethically good rural palliative care. These values were congruent across the study communities and across the stakeholders involved in rural palliative care. Although these were highly prized values, each came with a corresponding ethical tension. Being known often resulted in a loss of privacy. Being available and present created a high degree of expectation and potential caregiver strain. The values of community and mutuality created entitlement issues, presenting daunting challenges for coordinated change. Conclusions: The values identified in this study offer the opportunity to better understand common ethical tensions that arise in rural healthcare and key differences between rural and urban palliative care. In particular, these values shed light on problematic health system and health policy changes. When initiatives violate deeply held values and hard won rural capacity to address the needs of their dying members is undermined, there are long lasting negative consequences. The social fabric of rural life is frayed. These findings offer one way to re-conceptualize healthcare decision making through consideration of critical values to support ethically good palliative care in rural settings. (shrink)

Insight is an important and repeated component of most qualitative research studies. Yet insight is often a vague concept that is not well articulated in textbooks and research reports. The late James Loder of Princeton University posited a theologically-based process he termed ‘the transforming moment’ that identifies predictable phases in a wide variety of transformations, including those of a psychological, scientific, and spiritual nature. This process corresponds at many levels with the role of insight in qualitative research. As (...) a result, careful examination of Loder's outline of the transformative process can help clarify what is meant by insight and how it informs research activities. (shrink)

The construct of locus of control of reinforcement has generated thousands of studies since its introduction as a psychological concept by Julian Rotter. Although evidence indicates its importance for a wide range of outcomes, comparatively little research has been directed toward identification of potential developmental antecedents of internal/external expectancies. A previous review of antecedent findings called for more research to be completed, particularly using observational and/or longitudinal methodologies. The current paper summarizes and evaluates antecedent research published in the intervening years (...) since Carton and Nowicki’s review. Results largely were consistent with expectations based on Rotter’s social learning theory, although there is still a need for researchers to use observational, rather than self-report methodologies, and to include data from non-western cultures. (shrink)

Sudden, broad-scale shifts in public opinion about social problems are relatively rare. Until recently, social scientists were forced to conduct post-hoc case studies of such unusual events that ignore the broader universe of possible shifts in public opinion that do not materialize. The vast amount of data that has recently become available via social media sites such as Facebook and Twitter—as well as the mass-digitization of qualitative archives provide an unprecedented opportunity for scholars to avoid such selection on (...) the dependent variable. Yet the sheer scale of these new data creates a new set of methodological challenges. Conventional linear models, for example, minimize the influence of rare events as “outliers”—especially within analyses of large samples. While more advanced regression models exist to analyze outliers, they suffer from an even more daunting challenge: equifinality, or the likelihood that rare events may occur via different causal pathways. I discuss a variety of possible solutions to these problems—including recent advances in fuzzy set theory and machine learning—but ultimately advocate an ecumenical approach that combines multiple techniques in iterative fashion. (shrink)

Communities, policy actors and conservationists benefit from understanding what institutions and land management regimes promote ecosystem services like carbon sequestration and biodiversity conservation. However, the definition of success depends on local conditions. Forests’ potential carbon stock, biodiversity, and rate of recovery following disturbance are known to vary with a broad suite of factors including temperature, precipitation, seasonality, species’ traits and land use history. Methods like forest changes over time , and comparison with 'pristine' reference forests have been proposed to compare (...) the structure and biodiversity of forests in the face of underlying differences. However, data from previous visits or reference forests may be unavailable or costly to obtain. Here, we introduce a new metric of locally weighted forest inter-comparison to mitigate the above shortcomings. This method is applied to an international database of nearly 300 community forests, and compared with previously published techniques. It is particularly suited to large databases where forests may be compared among one another. Further, it avoids problematic comparisons with old-growth forests which may not resemble the goal of forest management. In most cases, the different methods produce broadly congruent results, suggesting that researchers have the flexibility to compare forest conditions using whatever type of data is available. Forest structure and biodiversity are shown to be independently measurable axes of forest condition, although users’ and foresters’ estimations of seemingly unrelated attributes are highly correlated, perhaps reflecting an underlying sentiment about forest condition. These findings contribute new tools for large-scale analysis of ecosystem condition and natural resource policy assessment. Although applied here to forestry, these techniques have broader applications to classification and evaluation problems using crowdsourced or repurposed data for which baselines or external validations are not available. (shrink)

In research textbooks, and much of the research practice, they describe, qualitative processes and interpretivist epistemologies tend to dominate visual methodology. This article challenges the assumptions behind this dominance. Using exemplification from three existing visual data sets produced through one large education research project, this article considers the affordances and constraints of the research process focusing particularly on analysis. It examines how and when the visual can be incorporated, gives some critical reflections on the role and use (...) of visual methods to fulfil different research intents, and, in particular, considers combining large, open-ended data sets with acceptable and rigorous analysis techniques. We then explore arguments about the nature of visual data, what is considered epistemologically appropriate and the decision-making which accompanies any appraisal of process in education research. The intention is to challenge ourselves, and fellow visual methods researchers, to develop a more complete understanding of the theory and practice of visual research. (shrink)

The paper explores the potential and limitations of big data for researching racism on social media. Informed by critical data studies and critical race studies, the paper discusses challenges of doing big data research and the problems of the so called ‘white method’. The paper introduces the following three types of approach, each with a different epistemological basis for researching racism in digital context: 1) using big data analytics to point out the dominant power relations and (...) the dynamics of racist discourse, 2) complementing big data with qualitative research and 3) revealing new logics of racism in datafied context. The paper contributes to critical data and critical race studies by enhancing the understanding of the possibilities and limitations of big data research. This study also highlights the importance of contextualisation and mixed methods for achieving a more nuanced comprehension of racism and discrimination on social media and in large datasets. (shrink)

In follow-up to a large-scale ethics survey of neuroscientists whose research involves neuroimaging, brain stimulation and imaging genetics, we conducted focus groups and interviews to explore their sense of responsibility about integrating ethics into neuroimaging and readiness to adopt new ethics strategies as part of their research. Safety, trust and virtue were key motivators for incorporating ethics into neuroimaging research. Managing incidental findings emerged as a predominant daily challenge for faculty, while student reports focused on the malleability of neuroimaging (...) data and scientific integrity. The most frequently cited barrier was time and administrative burden associated with the ethics review process. Lack of scholarly training in ethics also emerged as a major barrier. Participants constructively offered remedies to these challenges: development and dissemination of best practices and standardized ethics review for minimally invasive neuroimaging protocols. Students in particular, urged changes to curricula to include early, focused training in ethics. (shrink)

A number of questions are raised concerning the purposes of data coding in qualitative research. It is suggested that in some cases these purposes may usefully be organised into two broad categories, each of which requires a separate coding response. A research project is briefly described in which it was found useful to employ two distinct, though connected, phases of data coding along the lines proposed.

ABSTRACT Thematic analysis is the most widely used method for analysing qualitative data. Recent debates, highlighting the binary distinctions between reflexive TA grounded within the qualitative paradigm and codebook TA with neo-positivist orientations, have emphasized the existence of numerous tensions that researchers must navigate to produce coherent and rigorous research. This article attempts to resolve some of these tensions through developing an approach to TA underpinned by realist philosophy of science. Focusing on interview data, we propose (...) the use of three types of themes and the use of corresponding validity indicators. Using an illustrative example, we outline the conceptual foundations of a realist approach to TA and present recommendations for conducting it in practice. This approach, we claim, reconciles several existing binaries between distinctive types of TA by incorporating the contributions of both for the development of different types of themes. (shrink)

This article explores existential principles through autoethnographic poetry and narrative reflections. The use of poetry and narrative as tools in qualitative research is explored. Poetry and narratives are shown to be valuable tools for presenting people’s lived experiences of complex existential principles and processes. The use of poetry and narrative in this research is positioned within the traditions of expressive arts and postmodern research methods.

Reactivity in qualitative data collection occurs when a researcher generates data about a situation with reactivity, that is, a situation in which the ongoing research affects the research participants such that they, say, diverge from their routines when the researcher is present, or tell the researcher what they think she wants to hear. In qualitative research, there are two basic approaches to reactivity. The traditional position maintains that data should ideally be collected in situations without (...) any reactivity. In other words, good data are reactivity free. By contrast, the more recent view holds that data from situations with reactivity are fine as long as the researcher is aware of the occurring reactivity so that she can take it into account when interpreting her data. In this fashion, good data are reactivity transparent. In this paper, I first spell out and defend the more recent approach to reactivity. I argue that qualitative data are reactivity transparent when conjoined with true reactivity assumptions and that, thus supplemented, data are informative about social life independently of its being studied. Next, I examine various issues raised by the requirement to put forth true reactivity assumptions. Lastly, I use my discussion of reactivity transparency as a basis for providing a framework for thinking about good qualitative data. (shrink)

Hermeneutics and narration: a way to deal with qualitative data This article focuses a hermeneutic approach on the interpretation of narratives. It is based on the French philosopher Paul Ricoeur's theory of interpretation but modified and used within a caring science paradigm. The article begins with a presentation of the theoretical underpinnings of hermeneutic philosophy and narration, as well as Ricoeur's theory of interpretation, before going on to describe the interpretation process as modified by the authors. The interpretation (...) process, which consists of several stages, is exemplified and discussed using a single case from a larger study on suffering. The results of that study indicate that the struggle of suffering is perceived as a struggle formed between shame and dignity, and that nurses must engage in the process of preserving and restoring the dignity of their suffering patients. The authors suggest that Ricoeur's theory of interpretation is useful when trying to understand narrative data if the researcher realises that the process of distanciation, although central in Ricoeur's thinking, is not the goal of the process but rather a means to deal with the researcher's pre‐understandings. According to Ricoeur, distanciation is accomplished by putting the context aside and dealing with the text ‘as text’ and thereby explaining its meaning. Explanation thus becomes the dialectic counterpart to understanding in the interpretation process. The researchers further argue that distanciation must be followed by reflection, where the interpretations are linked back to the empirical context. (shrink)

Data access committees (DAC) gatekeep access to secured genomic and related health datasets yet are challenged to keep pace with the rising volume and complexity of data generation. Automated decision support (ADS) systems have been shown to support consistency, compliance, and coordination of data access review decisions. However, we lack understanding of how DAC members perceive the value add of ADS, if any, on the quality and effectiveness of their reviews. In this qualitative study, we report (...) findings from 13 semi-structured interviews with DAC members from around the world to identify relevant barriers and facilitators to implementing ADS for genomic data access management. Participants generally supported pilot studies that test ADS performance, for example in cataloging data types, verifying user credentials and tagging datasets for use terms. Concerns related to over-automation, lack of human oversight, low prioritization, and misalignment with institutional missions tempered enthusiasm for ADS among the DAC members we engaged. Tensions for change in institutional settings within which DACs operated was a powerful motivator for why DAC members considered the implementation of ADS into their access workflows, as well as perceptions of the relative advantage of ADS over the status quo. Future research is needed to build the evidence base around the comparative effectiveness and decisional outcomes of institutions that do/not use ADS into their workflows. (shrink)