In this article, interviewing from a descriptive, phenomenological, human scientific perspective is examined. Methodological issues are raised in relation to evaluative criteria as well as reflective matters that concern the phenomenological researcher. The data collection issues covered are 1) the selection of participants, 2) the number of participants in a study, 3) the interviewer and the questions, and 4) data collection procedures. Certain conclusions were drawn indicating that phenomenological research methods cannot be evaluated on the basis of an (...) empiricist theory of science, but must be critiqued from within a phenomenological theory of science. Some reflective matters, experienced by the phenomenological researcher, are also elaborated upon. (shrink)

This article explicates, in a concrete, step-by-step manner, some procedures that can be followed in phenomenologically analyzing interview data. It also addresses a number of issues that are raised in relation to phenomenological research.

This article explores the possibilities of considering how ‘matter and meaning are mutually constituted’ in the production of knowledge (Barad, 2007: 152) through presenting a diffractive analysis of a piece of interview data with a six-year-old boy in a preschool class. Inspired by Donna Haraway’s (1997) and Karen Barad’s (2007) theorising, I understand diffractive analysis as an embodied engagement with the materiality of research data: a becoming-with the data as researcher. Understanding the body as a space (...) of transit, a series of open-ended systems in interaction with the material-discursive ‘environment’, diffractive analyses constitute transcorporeal engagements with data. Stacy Alaimo’s (2010) theorisation of the transcorporeal is put to work diffractively with Gilles Deleuze and Felix Guattari’s (1987) thinking on the process of becoming minor or minoritarian. This implies a reconceptualisation of the very act of thinking as a transcorporeal process of engagement, going beyond the idea of reflexivity and interpretation as inner mental activities taking place in the mind of the researcher understood as separated from the data. Through my example, I argue that diffractive analysis can make visible new kinds of material-discursive realities that can have transformative and political consequences. (shrink)

PurposeWe explored two complex phenomena associated with effective education. First, teachers’ professional agency, the volitional actions they take in response to perceived opportunities, was examined to consider individual differences in its enactment. Second, “strong” emotions have been proposed as important in teaching and learning, and we wished to clarify which basic emotions might be involved, besides curiosity, which is a known emotional factor in engagement in teaching. We also explored how agency and basic emotions might be related.ApproachThirteen teachers working in (...) Scottish secondary schools were interviewed at the start of the covid pandemic in 2020 to discuss relevant feelings, thoughts and actions arising from unprecedented changes in their lives and professional practices. Thematic analysis was used to identify aspects of agentic behavior and basic emotions expressed.FindingsTeacher agency was expressed through adaptability, collective agency, constrained agency, and non-action. Four basic emotion percepts were identified, which we label as “CARE”, “CURIOSITY”, “COOPERATION”, and “CHALLENGE”.OriginalityWe extend the definition of agency to include volitional non-action as a response to opportunity. In contrast to prior research emphasizing emotions as an outcome of volitional behavior, we explore emotions preceding agency. We develop four theoretical propositions related to teacher emotions. Four emotion percepts substantially influence teachers’ voluntary motivated behavior. The amount and proportion of emotions experienced varies between individual teachers. The four percepts are experienced concurrently or in rapid succession in engaged teaching contexts. Professional experience and specific situational factors also influence teachers’ behavioral choices. For future consideration, we suggest that awareness of emotion percepts may encourage both teachers’ engagement and their professional agency for the benefit of their pedagogical practice and outcomes for their students. (shrink)

Participant rights and voices are protected through institutional ethical considerations in the social sciences and applied linguistics. Yet, several ethical concerns remain. In addition to adhering to institutional macroethics, researchers should develop microethics to address contextual issues within their research. The need for the development of microethics is particularly important in the qualitative research process where researchers engage in studies with participants rather than treating them merely as data sources. Drawing on key concepts in philosophical hermeneutics, the current study (...) discusses an ethical framework for data collection and analysis that embraces participants’ rights and voices through reflexive questioning, reciprocal dialogues, unbiased listening, and rightful analysis of participants’ data with and from two multilingual families in Norway. Participatory diagramming was employed in a collaborative participatory approach to present the collected data and initial data analysis to the participants, allowing them to review and validate the data analysis conducted by the researchers. Using thematic analysis to analyze participants’ experiences and reflections, our findings indicate that the ethical framework of interview and analysis enhanced researchers’ understanding, empowered participants in the research process, facilitated member-checking, created beneficial collaboration opportunities for the participants, and facilitated reaffirmation of informed consent. (shrink)

Despite the popularity of the employment interview in the employee selection literature and organizational talent selection process, few have examined the comments interviewers give after each interview. This study investigated the predictability of the match between interviewer post-interview notes and radar charts from job analysis on the candidate’s later career performance using text mining techniques and data from one of the largest internet-based technology companies in China. A large sample of 7,650 interview candidates who passed (...) the interviews and joined the company was obtained to show that the number of job-related capabilities interviewers mentioned in their notes was positively related to candidate’s job performance, the number of promotions, and negatively related to turnover. Moreover, the dimensions of the radar chart from job analysis covered in the interview moderated the predictability of interview post-interview notes. Our results indicated that a smaller number of radar chart dimensions by which interviewers assessed the candidates in the interview positively moderated candidates’ promotion for product development jobs, and negatively moderated turnover for technical jobs. The implications of these results for structured interview research in both theory and practice are discussed. (shrink)

Research in psychopathology is booming in an unprecedented way, at least, in terms of increasing number of publications. Yet, a few questions arise: Does quantity also give us quality? Are the collected data generally of sound quality? How are data typically collected in psychopathology? Are the applied methods of data collection appropriate for this particular field of study? This article explores three different methods of data collection in psychopathology, namely self-rating scales, structured interviews, and semi-structured, phenomenological (...) interviews. To identify the most adequate methodological approach, we first establish the nature of the object of psychopathology and then we critically assess each method’s appropriateness to this field of study. We emphasize fundamental issues that make self-rating scales and structured interviews unfit for the task of adequately examining psychopathology. By contrast, we propose that a semi-structured, phenomenological interview presents a more appropriate method. Finally, we describe two types of semi-structured, phenomenological interviews that can be applied to assess and explore psychopathology, respectively. (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)

Research in psychopathology is booming in an unprecedented way, at least, in terms of increasing number of publications. Yet, a few questions arise: Does quantity also give us quality? Are the collected data generally of sound quality? How are data typically collected in psychopathology? Are the applied methods of data collection appropriate for this particular field of study? This article explores three different methods of data collection in psychopathology, namely self-rating scales, structured interviews, and semi-structured, phenomenological (...) interviews. To identify the most adequate methodological approach, we first establish the nature of the object of psychopathology and then we critically assess each method’s appropriateness to this field of study. We emphasize fundamental issues that make self-rating scales and structured interviews unfit for the task of adequately examining psychopathology. By contrast, we propose that a semi-structured, phenomenological interview presents a more appropriate method. Finally, we describe two types of semi-structured, phenomenological interviews that can be applied to assess and explore psychopathology, respectively. (shrink)

In this article we explore the role of data custodians in establishing and maintaining social licence for the use of personal information in health research. Personal information from population‐level data collections can be used to make significant contributions to health and medical research, but this use is dependent on community acceptance or a social licence. We conducted semi‐structured interviews with data custodians across Australia to better understand data custodians’ views on their roles and responsibilities. This inductive, (...) thematic analysis of the interview data focuses on three factors that contribute to social licence – reciprocity, non‐exploitation and the public good. While the data custodians interviewed did not explicitly frame their role in the context of social licence, their descriptions of their roles and responsibilities clearly indicated that they did have some role to play in building and maintaining social licence. (shrink)

An exploration of the risks and benefits of AI, particular regarding privacy.

Background Improving the ways in which routinely-collected mental health data are shared could facilitate substantial advances in research and treatment. However, this process should only be undertaken in partnership with those who provide such data. Despite relatively widespread investigation of public perspectives on health data sharing more generally, there is a lack of research on the views of people with mental illness. Methods Twelve people with lived experience of mental illness took part in semi-structured interviews via online (...) video software. Participants had experience of a broad range of mental health conditions including anxiety, depression, schizophrenia, eating disorders and addiction. Interview questions sought to establish how participants felt about the use of routinely-collected health data for research purposes, covering different types of health data, what health data should be used for, and any concerns around its use. Results Thematic analysis identified four overarching themes: benefits of sharing mental health data, concerns about sharing mental health data, safeguards, and data types. Participants were clear that health data sharing should facilitate improved scientific knowledge and better treatments for mental illness. There were concerns that data misuse could become another way in which individuals and society discriminate against people with mental illness, for example through insurance premiums or employment decisions. Despite this there was a generally positive attitude to sharing mental health data as long as appropriate safeguards were in place. Conclusions There was notable strength of feeling across participants that more should be done to reduce the suffering caused by mental illness, and that this could be partly facilitated by well-managed sharing of health data. The mental health research community could build on this generally positive attitude to mental health data sharing by following rigorous best practice tailored to the specific concerns of people with mental illness. (shrink)

Qualitative research in psychology has tended to draw on a relatively narrow range of research methods, and the recent shift towards the analysis of material involving `naturally occurring talk' in some areas of psychology has reinforced this trend. This article discusses the implications of a preference for the analysis of `naturally occurring talk' or `naturalistic records' across the full range of qualitative psychology research. In particular, I focus on how researchers are positioned in debates over the advantages and limitations of (...) analysing `naturally occurring data' and research interviews. Drawing on examples from a current project concerned with the meanings of consumption for young people, I interrogate the assumptions associated with a preference for analysing `naturalistic records' and consider some of the benefits as well as the problems involved in using research practices that involve a degree of direct engagement between the researcher and other participants. This article is therefore discussing the origins as well as the implications of the preference for analysing `naturally occurring data'. (shrink)

Personal data protection is an ethical issue. In this study we analyzed how research ethics committees (RECs) and data protection officers (DPOs) handle personal data protection issues in research protocols. We conducted a mixed-methods study. We included heads (or delegated representatives) of RECs and DPOs from universities and public research institutes in Croatia. The participants provided information about data protection issues in research and their mutual collaboration on those issues through structured interviews that contained closed and (...) open-ended questions. Qualitative description was used to analyze open-ended questions. The results showed that 55% of the REC representatives were not aware who was DPO in their institution. Among RECs, 65% never contacted the DPO. There were 61% of RECs who reported that they received no training from the organization on personal data protection. When asked about barriers to personal data protection in their institutions, 26% of REC members highlighted the lack of a clear protocol for assessing personal data protection issues, while 30% of DPOs mentioned lack of knowledge among researchers about personal data. In conclusion, we found that when it came to protecting personal data in research protocols, RECs and DPOs hardly ever worked together. When developing future personal data protection policies for academic and scientific research institutions, it is essential that RECs and DPOs should collaborate and both continue to expand/update their knowledge on personal data protection procedures. (shrink)

BackgroundHealth data-driven activities have become central in diverse fields (research, AI development, wearables, etc.), and new ethical challenges have arisen with regards to privacy, integrity, and appropriateness of use. To ensure the protection of individuals’ fundamental rights and freedoms in a changing environment, including their right to the protection of personal data, we aim to identify the ethical approaches adopted by scientists during intensive data exploitation when collecting, using, or sharing peoples’ health data.MethodsTwelve scientists who were (...) collecting, using, or sharing health data in different contexts in Sweden, were interviewed. We used systematic expert interviews to access these scientists’ specialist knowledge, and analysed the interviews with thematic analysis. Phrases, sentences, or paragraphs through which ethical values and norms were expressed, were identified and coded. Codes that reflected similar concepts were grouped, subcategories were formulated, and categories were connected to traditional ethical approaches.ResultsThrough several examples, the respondents expressed four different ethical approaches, which formed the main conceptual categories: consideration of consequences, respect for rights, procedural compliance, and being professional.ConclusionsTo a large extent, the scientists’ ethical approaches were consistent with ethical and legal principles. Data sharing was considered important and worth pursuing, even though it is difficult. An awareness of the complex issues involved in data sharing was reflected from different perspectives, and the respondents commonly perceived a general lack of practical procedures that would by default ensure ethical and legally compliant data collection and sharing. We suggest that it is an opportune time to move on from policy discussions to practical technological ethics-by-design solutions that integrate these principles into practice. (shrink)

The article focuses on a method for collecting qualitative data. The method is the asynchronous email interview. The authors assess the advantages, challenges and best practices of the asynchronous email interview method. They base their assessment on the academic literature and their own experiences using this data collection method in qualitative research on women who had experienced perinatal loss. The asynchronous email interview will never fully replace traditional face-to-face interviews, but it could gain a solid (...) position as a qualitative research method thanks to its unique benefits. (shrink)

BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use (...) of genetic and health-related data for observational research.MethodsWe conducted qualitative interviews (n = 19) with Dutch sudden cardiac arrest survivors who donated clinical and socio-economic data and genetic samples to research. We also interviewed their next-of-kin. Topics were informed by ethics literature and we used scenario-sketches to aid discussion of complex issues.ResultsSudden cardiac arrest survivors displayed limited awareness of their involvement in health data research and of the content of their given consent. We found that preferences regarding disclosure of clinically actionable genetic findings could change over time. When data collection and use were limited to the medical realm, patients trusted researchers to handle data responsibly without concern for privacy or other risks. There was no consensus as to whether deferred consent should be explicitly asked from survivors. If consent is asked, this would ideally be done a few months after the event when cognitive capacities have been regained. Views were divided about the need to obtain proxy consent for research with deceased patients’ data. However, there was general support for the disclosure of potentially relevant post-mortem genetic findings to relatives.ConclusionsSudden cardiac arrest patients’ donation of data for research was grounded in trust in medicine overall, blurring the boundary between research and care. Our findings also highlight questions about the acceptability of a one-time consent and about responsibilities of patients, researchers and ethics committees. Finally, further normative investigation is needed regarding the (continued) use of participants’ data after death, which is of particular importance in this setting. Our findings are thought to be of relevance for other acute and life-threatening illnesses as well. (shrink)

In the Australian state of Victoria, legislation allowing voluntary assisted dying (VAD) passed through parliament in November 2017. There was then an eighteen-month period before the start date for patient access to VAD, referred to as the “implementation period.” The implementation period was intended to allow time for the relevant government department and affected organizations to develop processes before the Act came into effect in June 2019. This qualitative interview study investigates the perspectives of a multidisciplinary sample of twelve (...) clinicians from a single metropolitan hospital during this implementation period. Maximum variation sampling was utilized to ensure breadth across discipline (medical, nursing, allied health), speciality, and stated level of support for the VAD legislation. Four key themes were identified from the interview data: preparing for the unknown, ethical diversity within the organization, building a respectful culture, and concerns about the inability of the legislated approach to capture clinical nuances. Overall, these clinicians’ workplace experiences during the implementation period were shaped by the ethical diversity within their organization and a sense of uncertainty about how the VAD legislation would integrate with the practical realities of their clinical setting. The concept of “ethical diversity” could be a useful one for supporting staff in an organization during a VAD implementation period. (shrink)

Ethical research practice requires inclusionary approaches that enable people to contribute as fully as possible. Not enough is yet known about the impacts of dementia on daily life, however, people with dementia may find inclusion in research challenging, as the ‘cognitive load’ required may be overwhelming. When responding is difficult, others may contribute and the voice of people with dementia may be diminished. In this paper, the method of walking interviews is reflected on following a study that examined the acceptability (...) and usefulness of Global Positions Systems (GPS). Attention is drawn to an observation of the contributions people with dementia made whilst out walking with the researchers. When out walking, people with dementia used the environment as sensory prompts to start conversations, and these discussions shaped research data, and enabled people with dementia to raise concerns about the impacts of dementia, their futures and what they feared for themselves and their families. The challenges that people with dementia faced in negotiating everyday practices were visible. The person with dementia showed the researcher around their neighbourhood, and this significantly changed the interview dynamic and positioned people with dementia as leading the interaction. (shrink)

The Snowden leaks, first published in June 2013, provided unprecedented insights into the operations of state-corporate surveillance, highlighting the extent to which everyday communication is integrated into an extensive regime of control that relies on the ‘datafication’ of social life. Whilst such data-driven forms of governance have significant implications for citizenship and society, resistance to surveillance in the wake of the Snowden leaks has predominantly centred on techno-legal responses relating to the development and use of encryption and policy advocacy (...) around privacy and data protection. Based on in-depth interviews with a range of social justice activists, we argue that there is a significant level of ambiguity around this kind of anti-surveillance resistance in relation to broader activist practices, and critical responses to the Snowden leaks have been confined within particular expert communities. Introducing the notion of ‘data justice’, we therefore go on to make the case that resistance to surveillance needs to be conceptualized on terms that can address the implications of this data-driven form of governance in relation to broader social justice agendas. Such an approach is needed, we suggest, in light of a shift to surveillance capitalism in which the collection, use and analysis of our data increasingly comes to shape the opportunities and possibilities available to us and the kind of society we live in. (shrink)

In light of recent technological innovations and discourses around data and algorithmic analytics, scholars of many stripes are attempting to develop critical agendas and responses to these developments. In this mutual interview, three scholars discuss the stakes, ideas, responsibilities, and possibilities of critical data studies. The resulting dialog seeks to explore what kinds of critical approaches to these topics, in theory and practice, could open and make available such approaches to a broader audience.

This open access book explains how leading business organizations attempt to achieve the responsible and ethical use of artificial intelligence (AI) and other advanced information technologies. These technologies can produce tremendous insights and benefits. But they can also invade privacy, perpetuate bias, and otherwise injure people and society. To use these technologies successfully, organizations need to implement them responsibly and ethically. The question is: how to do this? Data ethics management, and this book, provide some answers. -/- The authors (...) interviewed and surveyed data ethics managers at leading companies. They asked why these experts see data ethics as important and how they seek to achieve it. This book conveys the results of that research on a concise, accessible way. -/- Much of the existing writing on data and AI ethics focuses either on macro-level ethical principles, or on micro-level product design and tooling. The interviews showed that companies need a third component: data ethics management. This third element consists of the management structures, processes, training and substantive benchmarks that companies use to operationalize their high-level ethical principles and to guide and hold accountable their developers. Data ethics management is the connective tissue makes ethical principles real. It is the focus of this book. -/- This book should be of use to organizations that wish to improve their own data ethics management efforts, legislators and policymakers who hope to build on existing management practices, scholars who study beyond compliance business behavior, and members of the public who want to understand better the threats that AI poses and how to reduce them. (shrink)

BackgroundIn gender-affirming medical care (GAMC), ethical challenges in decision-making are ubiquitous. These challenges are becoming more pressing due to exponentially increasing referrals, politico-legal contestation, and divergent normative views regarding decisional roles and models. Little is known, however, about what ethical challenges related to decision-making healthcare professionals (HCPs) themselves face in their daily work in GAMC and how these relate to, for example, the subjective nature of Gender Incongruence (GI), the multidisciplinary character of GAMC and the role HCPs play in assessing (...) GI and eligibility for interventions. Given the relevance and urgency of these questions, we conducted a qualitative study among HCPs providing GAMC to transgender adults in the Netherlands.MethodsIn this qualitative research, we conducted 11 semi-structured interviews between May 2020 and February 2021 with HCPs (six mental health professionals, two HCPs in endocrinology, two in plastic surgery, and one in nursing) working in two distinct GAMC settings. We purposively sampled for professional background and years of experience in GAMC. We analyzed our interview data using thematic analysis. As some respondents were more inclined to speak about what should or ought to be done to arrive at good or right decision-making, we identified both ethical challenges and norms. Furthermore, in our analysis, we differentiated between respondents’ explicit and implicit ethical challenges and norms and ascertained the specific context in which these challenges emerged.ResultsRespondents’ ethical challenges and norms centered on (1) dividing and defining decisional roles and bounds, (2) negotiating decision-making in a (multidisciplinary) team, and (3) navigating various decision-making temporalities. These themes arose in the context of uncertainties regarding (1) GAMC’s guidelines, evidence, and outcomes, as well as (2) the boundaries and assessment of GI.ConclusionsThis interview study provides detailed empirical insight into both the explicit and implicit ethical challenges that HCPs experience and their ethical norms regarding decision-making. It also describes how uncertainties and (implicit) normativities concerning GAMC and GI pre-structure the moral environment in which these challenges and norms manifest. We provide normative reflections and recommendations on handling these ethical challenges in a way that is sensitive to the context in which they arise. (shrink)

In this study caring is shown to be a membershipbound activity to kin and gender categories with strong moral connotations. Being a daughter or being a son are good enough reasons for becoming a caregiver, more so for women than for men. Caregivers were interviewed within the research project The role of women in family care of disabled elderly conducted by the Social and Economic Research Department of INRCA, Ancona, Italy. Transcripts of the interviews were analyzed through a detailed discourse (...) analysis within an ethnomethodological framework. Interview data are treated as interactional encounters that occasion members to display relevant aspects of their identities and morally adequate images of being a caregiver. In the interview interaction, interlocutors display an orientation towards the production of a moral order in which duty and responsibilities are allocated on the basis of gender distinction. Males are generally described as not being responsible for caring tasks, except for situations in which females are absent or sick, that is, for serious reasons. Caregivers'' perception of time dedicated to caring is pervasive. Most caregivers said it occupied all their time, but gender differences were noticeable. Caring tasks are recognized as gender specific practices, thus failing to carry out these tasks is morally sanctionable when women are involved, but not so for men. Many caregivers described caring for older relatives as an intense source of stress, involving serious physical and psychological problems. The study on moral and identity issues related to caregiving highlights endangering constructions of caring. (shrink)

Under the banner of “data for good,” companies in the technology, finance, and retail sectors supply their proprietary datasets to development agencies, NGOs, and intergovernmental organizations to help solve an array of social problems. We focus on the activities and implications of the Data for Climate Action campaign, a set of public–private collaborations that wield user data to design innovative responses to the global climate crisis. Drawing on in-depth interviews, first-hand observations at “data for good” events, (...) intergovernmental and international organizational reports, and media publicity, we evaluate the logic driving Data for Climate Action initiatives, examining the implications of applying commercial datasets and expertise to environmental problems. Despite the increasing adoption of Data for Climate Action paradigms in government and public sector efforts to address climate change, we argue Data for Climate Action is better seen as a strategy to legitimate extractive, profit-oriented data practices by companies than a means to achieve global goals for environmental sustainability. (shrink)

This article explores the process by which intelligent transport system technologies have further advanced a data-driven culture in public transport and traffic control. Based on 12 interviews with transport engineers and fieldwork visits to three control rooms, it follows the implementation of Real-Time Passenger Information in Dublin and the various technologies on which it is dependent. It uses the concept of ‘data ratcheting’ to describe how a new data-driven rational order supplants a gradualist, conservative ethos, creating technological (...) dependencies that pressure organisations to take control of their own data and curate accessibility to outside organisations. It is argued that the implementation of Real-Time Passenger Information forms part of a changing landscape of urban technologies as cities move from a phase of opening data silos and expanded communication across departments and with citizens towards one in which new streams of digital data are recognised for their value in stabilising novel forms of city administration. (shrink)

BackgroundLarge-scale, centralized data repositories are playing a critical and unprecedented role in fostering innovative health research, leading to new opportunities as well as dilemmas for the medical sciences. Uncovering the reasons as to why citizens do or do not contribute to such repositories, for example, to population-based biobanks, is therefore crucial. We investigated and compared the views of existing participants and non-participants on contributing to large-scale, centralized health research data repositories with those of ex-participants regarding the decision to (...) end their participation. This comparison could yield new insights into motives of participation and non-participation, in particular the behavioural change of withdrawal.MethodsWe conducted 36 in-depth interviews with ex-participants, participants, and non-participants of a three-generation, population-based biobank in the Netherlands. The interviews focused on the respondents’ decision-making processes relating to their participation in a large-scale, centralized repository for health research data.ResultsThe decision of participants and non-participants to contribute to the biobank was motivated by a desire to help others. Whereas participants perceived only benefits relating to their participation and were unconcerned about potential risks, non-participants and ex-participants raised concerns about the threat of large-scale, centralized public data repositories and public institutes, such as social exclusion or commercialization. Our analysis of ex-participants’ perceptions suggests that intrapersonal characteristics, such as levels of trust in society, participation conceived as a social norm, and basic societal values account for differences between participants and non-participants.ConclusionsOur findings indicate the fluidity of motives centring on helping others in decisions to participate in large-scale, centralized health research data repositories. Efforts to improve participation should focus on enhancing the trustworthiness of such data repositories and developing layered strategies for communication with participants and with the public. Accordingly, personalized approaches for recruiting participants and transmitting information along with appropriate regulatory frameworks are required, which have important implications for current data management and informed consent procedures. (shrink)

Marketing research interviewers often feel that they must compromise their own moral principles while executing work-related activities. This finding is based on analysis of data obtained from three focus group interviews and a mail survey of 173 telephone survey interviewers. Data from the mail survey were used to construct scales measuring interviewers' perceived necessity of moral compromise, moral character, and job satisfaction. The three scales then were used in a hierarchical regression analysis to predict incidences of interviewers' self-reported (...) proscribed behaviors on the job, the latter being an index of behaviors known by interviewers to be wrong. Results support all hypothesized relationships. (shrink)

Future mobility planning to cope with ongoing environmental challenges such as air pollution has to be anchored in the work of every public authority worldwide. One recent trend that could support public authorities to meet the European Union’s sustainability targets is the creation and sharing of transport and mobility “big” data between public authorities via tools such as crowdsourcing. While the benefits of the use of big data to increase public authorities’ efficiency and effectivity and their citizens’ lives (...) is well understood, examples from the public sector that highlight public authorities’ engagement in such sharing activities is still missing. To date relevant literature has highlighted issues around the capacity of public authorities that hinder shared activities. In this paper we want to raise distrust as a key reason for lack of engagement. Based on comprehensive data collected over the period of 4 years via several workshops and semi-structured interviews with seven public authorities in Europe, we are able to demonstrate that a major obstacle for not providing and sharing data via crowdsourcing for mutual benefit lies primarily in the hands of the public authority’s servants of the middle and high-level management. Our results show firstly, that distrust may emerge toward different referents such as the community, particular individuals, or the technology itself and thus, managerial implications have to be very specific to overcome distrust. Secondly, we show how distrust may spread from one referent to another through negative reciprocity and which, if unchecked may lead to an all-encompassing state that affects the whole sharing economy framework and inhibits potential benefits. (shrink)

This paper reports key processes in interviewing children in a highly constrained setting in which many features of effective interviewing children were either absent or were contradicted, and in which many aspects of the interview situation rendered them potentially uncomfortable for the children. The children left feeling positive about themselves and the interviews, having given frank and useful research data. The paper reports the strategies used by the interviewers to bring about these positive outcomes. It reports 10 steps, (...) which the interviewers took whilst working within the constraints, to make the interviews effective and positive by rendering the strange familiar and by attending to the all-round quality of the qualitative interviews. The paper makes recommendations for interviewing children and how researchers can operate within children?s frame of reference and their expectations of adult behaviour and the interview situation. (shrink)

continent. 2.1 (2012): 40–43. Lance Olsen is a professor of Writing and Literature at the University of Utah, Chair of the FC2 Board of directors, and, most importantly, author or editor of over twenty books of and about innovative literature. He is one of the true champions of prose as a viable contemporary art form. He has just published Architectures of Possibility (written with Trevor Dodge), a book that—as Olsen's works often do—exceeds the usual boundaries of its genre as it (...) explores his interests in narrative theory and pedagogy. The book is a kind of “anti-textbook;” a performative polemic against the stale, conservative and monolithic conception of the literary that so often dominates institutional discourse around creative writing. The following interview takes the occasion of AoP's publication as a chance to speak with Olsen about the book itself as well as to engage with larger, unanswerable, questions about the futures and intersections of literature and education. —Ben Segal INTERVIEW: 1) First, I want to start before the beginning, with the title. I’m really fascinated by the concept it conjures. Can you say something about innovative/experimental/(choose your adjective) literature in relation to both ideas around architecture and possibility? Innovative or experimental are tremendously fraught adjectives, needless to say. But for the purposes of my book, they modify a fiction concerned with the questions: What is fiction? What can it do, and how, and why? Now, of course, what looks “innovative” or “experimental” to one at 17 may not be what looks “innovative” or “experimental” to one at 27 or 57, and what looks “innovative” or “experimental” in 1812 may not be what looks “innovative” or “experimental” in 2012. A certain existential and historical perspectivism is always at work. But I think it’s fair to say that innovative and experimental usually refer to a narrativity that includes a self-reflective awareness of and engagement with theoretical inquiry, concerns, and obsessions, as well as a sense of being in conversation with fiction across space and time. One can't create challenging writing in a vacuum; it has to challenge in relation to something. So contemporary writers interested in the subject are not only in pursuit of the innovative, but are also always-already writing subsequent to it—writing, that is, in its long wake. Architectures of Possibility conceives of creativity as a possibility space, a locale just outside our comfort zones where we can and should take multiple chances in order to imagine in new ways, explore fresh strategies for finding and cultivating ideas, re-view what it is we’re doing and why, better understand what Samuel Beckett meant when he wrote: “Try again. Fail again. Fail better.” It reminds us that there are other ways of narrating our worlds and ourselves than those we have inherited from the entertainment industry, the government, academia, previous writing, and so on. 2) AoP seems to be directed at several audiences (and purposes) simultaneously. What I mean is that it seems at times a polemic in favor of innovative literature, at other times a creative writing textbook, and still other times a guide to the network of publishers, journals, and programs that make up the current world of non-mainstream literary art in the U.S. In my mind, Architectures is a theorized anti-textbook about writing. Most textbooks on the subject (think of Janet Burroway’s Writing Fiction: A Guide to Narrative Craft , taught in most creative-writing classroom across the country) orchestrate how to construct conventional stories. They instruct from a place of power how to generate familiar stories that are repeated so often that many of us begin to take them as the primary model for narrativity, if not unconsciously as a kind of truth. The result, as Brian Kiteley points out in 3 A.M. Epiphany (one of the only other alternative textbooks about innovative writing around, by the way, and a tremendous repository of exercises), is merely competent texts. Architectures problematizes that gesture by outlining what conventional narrativity looks like, urging writers to think about its ideology of form as well as content, and invites them to imagine writing, not as a set of relatively stable conventions, but, rather, as a possibility space where everything can and should be thought, tried, challenged. It thereby rhymes with Roland Barthes’s definition of literature: the question minus the answer—which is to say Architectures poses complications to the act of writing rather than solutions. 3) One of the most notable things about the book is the use of interviews. This is also one of the reasons that I think the book works so well for a variety of audiences—that anyone with even a passing interest in the state and future of literature will have an interest in your conversation with people like Ben Marcus, Samuel Delany, and Lydia Davis. I was hoping you could just talk a little about how you chose these subjects to interview, how you edited the interview material, and which answers you received struck you the most. Experimentalism , like realism , wants to appear in the plural. The idea of gathering more than forty interviews (with the help of my awesome collaborator, Trevor Dodge, himself a fine innovative author) represents an attempt to suggest that: the wide, rich, exciting opportunities inherent in the term. There are interviews with younger writers, elder statesmen in the field, publishers, editors, hypermedia artists, comic book makers, and so on: Joe Wenderoth, Carole Maso, Scott McCloud, Nick Montfort, Kathy Acker, et al. Trevor and I decided to do flash interviews: short, concentrated Q&As, each focusing on a particular troubling of writing. We only lightly edited the results to match the manuscript’s overall style, and every interview arrived as a surprise housing several unexpected insights. Three brief examples: Michael Mejia, when asked about what he dreads when setting about writing: “Dread is an interesting word here. I associate it less with loathing or aversion, I suppose, than with a kind of productive fear. Do I dread a project’s failure? Sure, who doesn’t? Who wants to waste time on something that comes to nothing, or is unreadable? But then, what do these terms mean, and who or what defines a work as a ‘failure,’ as ‘waste,’ as ‘unreadable’? Should a work actually try to interrogate and exceed these conceptual limitations? My tendency is to write into dread in order to reveal to myself, as much as to any reader that may come after, the varied complacencies that make other, mostly more conventional writings, readable. It’s at the frontier between readability (security) and unreadability (terror) that I want to live creatively.” Carole Maso, when asked what she’d like a sentence to accomplish: “I think a sentence can if allowed carry emotional and intellectual states as they flee, as they come and go, an escaping essence difficult to hold in other ways. In this way I think the sentence can work as a phrase of music does, sounding something large and elusive in us. Alternatively it can provide sometimes a stability, an essence, a moment of being. Unlike music the sentence also of course carries language with all its potential for meaning making and memory traces and association with it as well. I probably love the accretion of sentences most—those patterns, that shimmer, that resonance.” Shelley Jackson, when asked what is innovative about the innovative: “The purpose of the innovative is, I think, to wake us up. We are not quite alive, most of the time; we occupy a sort of cartoon version of our lives, its lines made smooth by repetition. Writing can open the seams in that world, reintroduce us to the real lives that we have forgotten. Maybe all good writing is innovative in some sense, in that it shows or tells or makes you feel something you never felt before—something for which you have no cartoon ready.” 4) You talk a little about N. Katherine Hayles’s concept of Media Specific Analysis and propose the supplemental notion of Medium Specific Generation—basically taking Hayles and applying her thought from the perspective of the writer. I’ve been trying to develop somewhat related theoretical frameworks, so I was really excited to come upon this section of the book. I’m wondering if you can talk a little more about this idea and, in general, about the potentials that you see as being opened up by writers engaging with and exploiting different media as literary platforms? “Lulled into somnolence by five hundred years of print,” Hayles urges in her (at least for me) transformative 2004 essay, “Print is Flat, Code is Deep,” “literary analysis should awaken to the importance of media-specific analysis, a mode of critical attention which recognizes that all texts are instantiated and that the nature of the medium in which they are instantiated matters.” She goes on to argue critics should learn to become more attuned to the materiality of the medium under investigation—which is to say a story isn’t a story isn’t a story. Rather, the “same” story remediated through film is intrinsically different from that story remediated through conventionally printed books is intrinsically different from that story remediated through hypermedia. “Materiality,” Hayles goes on, “is reconceptualized as the interplay between a text’s physical characteristics and its signifying strategies, a move that entwines instantiation and signification at the outset.” My point in Architectures is simply to emphasize Media Specific Generation: the idea that when writing you should be cognizant, not only of the thematics of the text you are working on, and, as it were, the internal components of its narrativity (character, language, plot, etc.), but also of the material embodiment those components take, and, perhaps more important, the material embodiment those components can take. The idea that the way texts matter matters isn’t something usually addressed in any significant way in creative-writing classrooms and textbooks. It may almost go without saying such experimentation with typography, layout, and white space has a long tradition—certainly one that tracks back at least as far as Guillaume Apollinaire’s early twentieth-century Calligrammes , Laurence Sterne’s textually ribald eighteenth-century Tristram Shandy , although one could arguably plot a hypothetical trajectory that reaches to ancient Greek romances like Achilles Tatius’ second-century Leucippe and Clitophon . Experiments into atomic materiality and digital immateriality bracket the definition of “book” at the same time they highlight Michael Martone’s prediction of its present future as increasingly viral, collaborative, and ephemeral. Or, as Matthew Battles points out: the future of the “book” has already arrived, and it is “ethereal and networked” rather than “an immutable brick.”While conventional writing and reading practices are conceptualized as private, individual, relatively fixed experiences, many of the new forms indicate that writing and reading—from production through dissemination—are rapidly becoming public, collective, incrementally unfixed experiences. That strikes me as an astonishing set of opportunities for a writer to investigate. 5) Another concept you elaborate in AoP is that of limit texts, basically texts that, once you read them, change what you imagine as the shape/horizon/potential of literature. You provide a fantastic reading list of limit texts at the end of AoP. I was hoping you could talk about a few of them in terms of how they specifically operate as limit texts for you—how they expand your understanding of what literature could be or do. Karl Jaspers coined the word Grenzsituationen (border/limit situations) to describe existential moments accompanied by anxiety in which the human mind is forced to confront the restrictions of its existing forms—moments that make us abandon, fleetingly, the securities of our limitedness and enter new realms of self-consciousness. Death, for example. Limit texts are a variety of disturbance that carries various elements of narrativity to their brink so the reader can never quite imagine them in the same terms again. Once you’ve taken one down from the shelf, you’ll never be able to put it back up again. They won’t leave you alone. They will continue to work on your imagination long after you’ve read them. Simply by being in the world, they ask us to embrace difficulty, freedom, radical skepticism. One of the most important for me is Samuel Beckett’s The Unnamable . Instead of establishing conventional setting and building traditional character, from its first words it unsettles both: “Where now? Who now? When now?” That first trio of question marks broadcasts the thematics of the writing (“novel” may be too strong a word) that will follow: it is all about a voice (or, perhaps, voices, about the grammatical mistake of the first-person pronoun), a consciousness (maybe, again, too strong a word), often genderless, removed from place and chronology and socioeconomic reality, hovering in a state of perpetual aporia. All it knows is what it doesn’t know, and its not-knowing is blackly, sardonically comic. The Unnamable is the embodiment of an unreliable narrator—a subject position that can’t trust itself, let alone be trusted by a reader. It contradicts, takes back, digresses, undoes what it just did, forgets, lies, hallucinates gloriously. The language is abstract, disembodied, devoid of sensory data, grayish rather than painterly in texture. Without knowing this passage is from a novel, a reader might well conclude s/he were reading a patch of (anti-)Cartesian philosophy. It might be helpful to conceive of what Beckett is doing as post-genre writing, then, or perhaps what Raymond Federman referred to as critifiction—a mode that blurs conventional distinctions between theory and narrative. In completely different register, and much more recently, Anne Carson’s Nox blew me away. It takes the form of an elegy for her older brother, whom she didn’t know well and who died unexpectedly while on the run from the law in Europe. The thing itself arrives in a box that simulates a thick book, as well as the brother’s textual coffin. Open it, and inside you discover, not a codex, but an accordioned series of “pages” that folds out into an arrangement that suggests an ancient scroll (Carson is, perhaps illuminatingly, a professor of classics) made up of shards of her brother’s letters, old photographs, tickets, Carson’s observations, Catullus’ poem 101 (the one addressed to the Roman poet’s dead brother, a doubling of Carson’s situation), and extensive dictionary entries on all the words that compose that poem. The aggregate produces a collage about the impossibilities of aggregates, the impossibilities of understanding fully, of capturing absences in language. At times Nox feels less an example of what most readers consider a book than something closer to a three-dimensional work of assemblage art. It’s a beautiful mechanism for contemplating Media Specific Analysis, for urging us all to be more extreme. 6) Finally, I want to talk a little about pedagogy and institutions. I’m less interested in questions like “Are MFA programs good for writers?” than in questions about how your role as teacher informs your understanding of literature and your writing practice. I’m also very curious about your take on how commercially marginal literary art is largely patronized by large state institutions and at the same time often imagines itself as a critical and even possibly revolutionary practice. How have your own positions within universities and university-affiliated organizations shaped your thinking about them and about innovative literature? I can imagine in many ways it might make you even more critical. And (I know, another ‘and’...) how does AoP (especially given its relation to Rebel Yell , your previous text on creative writing) reflect your personal history and experience as a teacher and member of communities that are largely defined by institutions? In the classroom, I try to generate the pedagogical field I would have liked to have inhabited as a student, but didn’t. Roland Barthes has a lovely line about this: “We need to substitute for the magisterial [classroom] space of the past (the word delivered by the master from the pulpit above with the audience below, the flock, the sheep, the herd)—a less upright, less Euclidean space where no one, neither teacher nor students, would ever be in his final place.” Easier said than done, of course, but an important life project for all who think of themselves as educators. My own classroom, my own writing, and Architectures of Possibility itself attempt to create the sort of possibility space where, as I mentioned at the outset of our interview, everything should be thought, tried, challenged; where everything rhymes with Roland Barthes’s definition of literature: the question minus the answer. I’m not sure I could write what I’m writing now without the conversations I have almost daily with my students, the conversations they have with each other, the conversations we all have with the texts we study. Especially in light of the paradigm shift over the last, say, quarter century from academia as intellectual exploration to academia as McDonaldized trade school, the irony isn’t lost on me concerning the discrepancy between the safe harbor innovative authors find there and the cultural critiques those authors launch through their writing and pedagogical work. In 2001, I quit my full professorship at one institution precisely because of my disappointment over what had happened to the learning environment there. I had no intentions of reentering the field. In 2007, however, the University of Utah approached me, and I found myself in an environment much more hospitable to the sort of work I want to do—teaching experimental narrative theory and practice. It isn’t by any means a simple irony. One could easily argue innovative writing and pedagogy represents the trace of the paradigm Barthes suggests, and that trace is tremendously productive in all kinds of ways. Innovative writing has never and will never change the world in any large, macrocosmic way. But we’ve all had our lives changed, one by one, by an encounter with a difficult, rich, resonant piece of prose, poetry, music, art, you name it. We’ve all had our lives changed at the ahistorical, microcosmic moment by a class we’ve taken, a teacher we’ve studied with, to such an extent that we became, quite literally, different people. I just came across a stunning set of sentences from Derrida on the topic: “What is education? The death of the parents.” That’s what we’re all up to in the innovative, be it in written texts or the texts we call our classrooms or the texts we call our politics: trying to disrupt what both can and can’t be disrupted, trying to undo what both can and can’t be undone, continuously. (shrink)

Sociologists who use in-depth interview methods have become sensitized to the ways that race-ethnicity and class can form barriers to rapport with respondents, but the question of gender has been largely unexamined. This article compares data from two independently conducted in-depth interview studies of male nurses: one by a female researcher and one by a male researcher. Observed differences in how the men in the samples framed their responses to questions in the two studies are discussed. It (...) is argued that in-depth interviewers can and should become sensitized to respondents' negotiation of the gendered context of the interaction, but the existing proscriptions against cross-gender research are challenged. (shrink)

Social media commentary, satellite imagery and GPS data are a part of ‘alternative data’, that is, data that originate outside of the standard repertoire of market data but are considered useful for predicting stock prices, detecting different risk exposures and discovering new price movement indicators. With the availability of sophisticated machine-learning analytics tools, alternative data are gaining traction within the investment management and algorithmic trading industries. Drawing on interviews with people working in investment management and (...) algorithmic trading firms utilizing alternative data, as well as firms providing and sourcing such data, we emphasize social media-based sentiment analytics as one manifestation of how alternative data are deployed for stock price prediction purposes. This demonstrates both how sentiment analytics are developed and subsequently utilized by investment management firms. We argue that ‘alternative data’ are an open-ended placeholder for every data source potentially relevant for investment management purposes and harnessing these disparate data sources requires certain standardization efforts by different market participants. Besides showing how market participants understand and use alternative data, we demonstrate that alternative data often undergo processes of prospecting and assetization. We further contend that the widespread embracement of alternative data in investment management and trading encourages a financialization process at the data level which raises new governance issues. (shrink)

The aim of UK-REACH (“The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers”) is to understand if, how, and why healthcare workers (HCWs) in the United Kingdom (UK) from ethnic minority groups are at increased risk of poor outcomes from COVID-19. In this article, we present findings from the ethical and legal stream of the study, which undertook qualitative research seeking to understand and address legal, ethical, and social acceptability issues around data protection, privacy, and (...) information governance associated with the linkage of HCWs’ registration data and healthcare data. We interviewed 22 key opinion leaders in healthcare and health research from across the UK in two-to-one semi-structured interviews. Transcripts were coded using qualitative thematic analysis. Participants told us that a significant aspect of Big Data research in public health is varying drivers of mistrust—of the research itself, research staff and funders, and broader concerns of mistrust within participant communities, particularly in the context of COVID-19 and those situated in more marginalised community settings. However, despite the challenges, participants also identified ways in which legally compliant and ethically informed approaches to research can be crafted to mitigate or overcome mistrust and establish greater confidence in Big Data public health research. Overall, our research indicates that a “Big Data Ethics by Design” approach to research in this area can help assure (1) that meaningful community and participant engagement is taking place and that extant challenges are addressed, and (2) that any new challenges or hitherto unknown unknowns can be rapidly and properly considered to ensure potential (but material) harms are identified and minimised where necessary. Our findings indicate such an approach, in turn, will help drive better scientific breakthroughs that translate into medical innovations and effective public health interventions, which benefit the publics studied, including those who are often marginalised in research. (shrink)

In this interview with Isabelle Moeller questions surrounding the responsible use and development of biometric apps are explored. The use of biometrics - originally to digitally represent and authenticate an identifiable characteristic of a product or a person - have become so wide spread that they are capable of facilitating ever greater continuous surveillance of the what, how, when and where of life. The more biometrical data of a user is collected, the more the integrity of the underlying (...) e-identity is open to fraud and being invisibly compromised. Ethical reflection is long overdue but a prerequisite of minimizing risk to the autonomy of the human person as well as to the integrity of his digital persona. (shrink)

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)

Based on conversation analysis, this study investigates central practices in what is defined as a caring interview, in the context of welfare administration. Caring refers to a helpful interviewing in reformulations of questions, taking interviewees’ difficulties to answer into consideration; a caring attitude in the framing of questions, showing understanding of clients’ circumstances and professional’s enactment of expertise in assessments of clients’ disabilities and care needs. Data include a corpus of 43 recorded interviews in which officials at the (...) Swedish Social Insurance Agency interview clients who have applied for benefits. The study adds to research on interactional sensitivity, polar questions and epistemic stance in institutional interaction. The study shows how the interviewer prioritizes confirming polar questions, takes responsibilities of knowing into account and reduces the epistemic gap to the interviewee in practices of a caring interview. This makes the interviewing markedly different from standardized and bureaucratic interviewing. (shrink)

This paper presents an analysis of interviews, focus groups and workshops with employees in the technical administration in the municipality of Copenhagen in the year after it won a prestigious Smart City award. The administration is interpreted as a ‘most likely’ to succeed in translating the idealised version of the smart city into a workable bureaucratic practice. Drawing on the work of Orlikowski and Gash, the empirical analysis identifies and describes two incongruent ‘technological frames’ that illustrates different ways of making (...) sense of data and the smart city within this single organisational unit. One is called the experimentalist’s credo and it is characterised by inspiration from the development of an Internet of Things as well as a readiness to learn from the open source community in software development. The other is called the data-owners vocation and it is characterised by a more situated approach that interprets data as strategic and political. It is argued that the existence of these frames provides two insights relevant for the literature on smart cities. First, they illustrate that one should be careful not to reify the smart city as a phenomenon that can be criticised in generic terms. Second, they suggest that even if there exists a transition toward the implementation of a technocratic smart city paradigm across public administrations, this paradigm is not unique in its focus on markets and evidence in governance. (shrink)

BackgroundContradictory evidence exists about the emotional burden of participating in qualitative research for palliative care patients and carers and this raises questions about whether this type of research is ethically justified in a vulnerable population. This study aimed to investigate palliative care patients' and carers' perceptions of the benefits and problems associated with open interviews and to understand what causes distress and what is helpful about participation in a research interview.MethodsA descriptive qualitative study. The data were collected in (...) the context of two studies exploring the experiences of care of palliative care patients and carers. The interviews ended with questions about patients' and carers' thoughts on participating in the studies and whether this had been a distressing or helpful event. We used a qualitative descriptive analysis strategy generated from the interviews and the observational and interactional data obtained in the course of the study.ResultsThe interviews were considered helpful: sharing problems was therapeutic and being able to contribute to research was empowering. However, thinking about the future was reported to be the most challenging. Consent forms were sometimes read with apprehension and being physically unable to sign was experienced as upsetting. Interviewing patients and carers separately was sometimes difficult and not always possible.ConclusionThe open interview enables the perspectives of patients and carers to be heard, unfettered from the structure of closed questions. It also enables those patients or carers to take part who would be unable to participate in other study designs. The context is at least as important as the format of the research interview taking into account the relational circumstances with carers and appropriate ways of obtaining informed consent. Retrospective consent could be a solution to enhancing participants control over the interview. (shrink)

This paper explores the perspectives of women who have agreed that their umbilical cord blood may be collected for a public ‘cord blood bank’, for use in transplant medicine or research. Drawing on interview data from 27 mothers who agreed to the collection and use of their umbilical cord blood, these choices and the informed consent process are explored. It is shown that the needs of sick children requiring transplants are prominent in narrative accounts of cord blood banking, (...) together with high expectations for future applications of stem cells. Given this dynamic, a concern arises that the complex and multiple uses of tissues and related data might be oversimplified in the consent process. In conclusion, the positive finding of a commitment to mutuality in cord blood banking among these women is underlined, and its implications for the wider debate on cord blood banking are discussed. (shrink)

To support my Phd theses and results of my grant research in 1999, I asked 1) prominent chemist Antonín Holý, author of substances to treat hepatitis and HIV, about the indivisibility of the art and science (published in Slovak Narodna Obroda and Czech blisty,cz), 2) the distinguished economist William Baumol about the alternative activities (published in Slovak Nove Slovo, Czech Respekt and blisty.cz), 3) Nobel Laureate Clive Granger about the significance of the economics (published in 2004 in Czech weekly Tyden). (...) The interviews were exhibited in Holland Park, W8 6LU, The Ice House between 18. Oct - 3. Nov. 2013. (shrink)

This paper is a response to scholars who have called for exploring and interrogating new strategies of data collection and new approaches to more traditional methods, such as interviewing in the context of the internet. Drawing on feminist standpoint theory, ‘reflexive email interviewing’ is proposed as a method for feminist research. The method is illustrated using a recent case study of email interviews with self-identified women who are members of World Pulse, an online community that aims to unite and (...) amplify women's voices worldwide. Through this case study, issues of power and resistance in the researcher/researched relationship and of participant reflexivity are interrogated. Lastly, criteria for reflexive email interviewing are proposed, including 1) strategies to interrogate and disrupt power hierarchies within the research process, 2) researcher reflexivity as a continuous part of the research process, and 3) continued invitations for participants to directly reflect on and respond to the research process. Reflexive questions are offered for researchers to use during research design and in each phase of their research process to ensure reflexivity is achieved. (shrink)

The narrative of the digital phenotype as a transformative vector in healthcare is nearly identical to the concept of “data drivenness” in other fields such as law enforcement. We examine the role of a prescription drug monitoring program in California—a computerized law enforcement surveillance program enabled by a landmark Supreme Court case that upheld “broad police powers”—in the interprofessional conflict between physicians and law enforcement over the jurisdiction of drug use. We bring together interview passages, clinical artifacts, and (...) academic and gray literature to investigate the power relations between police, physicians, and patients to show that prescribing data appear to the physician as evidence of problematic patient behavior by the patients, and to law enforcement as evidence of physician misconduct. In turn, physicians have adopted a disciplinary approach to patients, using quasi-legalistic documents to litigate patient behavior. We conclude that police powers have been used to pave data infrastructure through a contested jurisdiction, and law enforcement have used that infrastructure to enroll physicians into the work of disciplining patients. (shrink)

Case Study research is characterized by the employment of multiple data gathering methods. In this paper, I examine the concurrent use of participant observation and qualitative interviews. The question I examine is: what is the rationale behind their combination in case study research? In the literature on case study research, the two most common reasons for using multiple methods appeal to comprehensiveness and convergent confirmation respectively. I argue that there is a third significant, yet overlooked, way to motivate the (...) joint use of participant observation and qualitative interviews: the methods may generate complementary evidence and this puts the researcher in a better position to confirm that her data manifest central epistemic values and so are suitable as basis for providing an adequate answer to her research question. I refer to this as the rationale of blended epistemic value validation. (shrink)

BackgroundIncreasingly, hospitals and research institutes are developing technical solutions for sharing patient data in a privacy preserving manner. Two of these technical solutions are homomorphic encryption and distributed ledger technology. Homomorphic encryption allows computations to be performed on data without this data ever being decrypted. Therefore, homomorphic encryption represents a potential solution for conducting feasibility studies on cohorts of sensitive patient data stored in distributed locations. Distributed ledger technology provides a permanent record on all transfers and (...) processing of patient data, allowing data custodians to audit access. A significant portion of the current literature has examined how these technologies might comply with data protection and research ethics frameworks. In the Swiss context, these instruments include the Federal Act on Data Protection and the Human Research Act. There are also institutional frameworks that govern the processing of health related and genetic data at different universities and hospitals. Given Switzerland’s geographical proximity to European Union (EU) member states, the General Data Protection Regulation (GDPR) may impose additional obligations.MethodsTo conduct this assessment, we carried out a series of qualitative interviews with key stakeholders at Swiss hospitals and research institutions. These included legal and clinical data management staff, as well as clinical and research ethics experts. These interviews were carried out with two series of vignettes that focused on data discovery using homomorphic encryption and data erasure from a distributed ledger platform.ResultsFor our first set of vignettes, interviewees were prepared to allow data discovery requests if patients had provided general consent or ethics committee approval, depending on the types of data made available. Our interviewees highlighted the importance of protecting against the risk of reidentification given different types of data. For our second set, there was disagreement amongst interviewees on whether they would delete patient data locally, or delete data linked to a ledger with cryptographic hashes. Our interviewees were also willing to delete data locally or on the ledger, subject to local legislation.ConclusionOur findings can help guide the deployment of these technologies, as well as determine ethics and legal requirements for such technologies. (shrink)