1,720,970 research outputs found
Interventional STS: A framework for developing workable technologies
No full textTechnological innovation is often positioned as a solution to the challenges of healthcare provision, yet the experience of bringing new technologies into practice has proven uneven and unpredictable. To realise the potential benefits of innovation, we need to understand the complex relations between contingencies and contexts that seem to be ubiquitous as new technologies are brought into play in healthcare settings. This article explores what the field of Science and Technology Studies (STS) can contribute to the understanding of implementation processes, arguing that combining Actor–Network Theory and Normalisation Process Theory provides a framework for prospective research. Drawing on examples from a prospective study of a new point-of-care test illustrates how the framework enabled an understanding of the processes likely to be involved in its implementation within three healthcare settings, with implications for the continued technical development. In combination, the theories enable different levels of analysis, but it is by keeping them in tension that this approach becomes practically applicable. If we are to rely on innovation to achieve improvements in healthcare provision, we need to find a way to intervene in the implementation process, and STS offer the resources to achieve this
Genomic data: building blocks for life or abstract art?
Get PDFThe genes found in the genetic code (genome) are sometimes called the “building blocks for life” but knowing how they impact human health can be more complicated than it sounds. This article aims to show how difficult it can be to understand how our genes can affect our health, and why it is not always easy to work out a patient’s result from genetic tests. We follow the story of Ben, whose muscles have been getting weaker for a few years. To find out why, Ben has had his genetic code sequenced, and we will walk you through a process by which his results can be analyzed. Through this activity, we will show you that analyzing patients’ genome tests is a bit like interpreting abstract art, in which different people might see and value different things
Using focus group discussions to explore the use of routinely collected health data: lessons learned
No full textBackground: The NHS aspires to the highest standards of excellence regarding the quality of healthcare. However, improvements often stall when viewed as research, separating them from healthcare. Ways to inhabit the hybrid space between healthcare and research, for example, technological developments in healthcare data collection, generate concerns about privacy, consent and data protection. Whilst such concerns are understandable, too much emphasis on these values comes at the cost of healthcare progress. Health psychology researchers can shine a light on this important area. Aim: Explore stakeholder views regarding their health data being routinely available for research and learning purposes.Methods: A rapid qualitative research design was used to conduct online focus group discussions (FGD). Twenty-nine participants (21 women) between 19-77 years-of-age (mean 33 years-of-age) took part in six FGDs; transcripts were analysed thematically.What went wrong: Despite our team’s experience, deliberating extensively regarding the content of the topic guide and several iterations after each FGD, the data were unable to meet our research aim. Participants often had strong, polarised views regarding privacy and security that prevented nuanced discussion and data saturation was quickly reached.Possible solutions/conclusions: Focus groups are not an effective method to explore complicated topics with which participants may have limited previous experience. Therefore, we have developed an innovative new approach, which includes: non-digital methods to engage with a broader sample; public consultation; space for science communication and for participants to form opinions; as well as creative methods of collecting views and opinions i.e. story/comic strip completion.<br/
Re-imagining ‘the patient’: linked lives and lessons from genomic medicine
Get PDFHow ‘the patient’ is imagined has implications for ethical decision-making in clinical practice. Patients are predominantly conceived in an individualised manner as autonomous and independent decision-makers. Fields such as genomic medicine highlight the inadequacies of this conceptualisation as patients are likely to have family members who may be directly affected by the outcome of tests in others. Indeed, professional guidance has increasingly taken a view that genetic information should, at times, be regarded as of relevance to families, rather than individuals. What remains absent from discussions is an understanding of how those living through/with genomic testing articulate, construct, and represent patienthood, and what such understandings might mean for practice, particularly ethical decision-making.
Employing the notion of ‘linked lives’ from lifecourse theory, this article presents findings from a UK-based qualitative longitudinal study following the experiences of those affected by the process and outcomes of genomic testing. The article argues that there is a discord between lived experiences and individualised notions of ‘the patient’ common in conventional bioethics, with participants predominantly locating their own decision-making within the matrix of linked lives in which they are embedded. In the quest to gain ‘answers’, many took an intra or intergenerational view, connecting their own experiences to those of past generations through familial narratives around probable explanations, and/or hopes and expectations for the health of imagined future generations. The article argues that a re-imagining of ‘the patient’, that reflects the complex and shifting nature of patienthood, will be imperative as genomic medicine is mainstreamed
The secret life of immortal data
No full textWe are moving towards a world in which data have a life beyond the individual; where the value and potential of data are ever-changing as technological developments bring new possibilities. This immortality of data raises new ethical and societal issues that have not yet been fully articulated, and consequently we are unprepared to deal with. The challenges of dealing with large volumes of personal data are increasingly apparent in many fields of practice, although they may manifest in different ways. This workshop brings together participants from diverse domains to provide an opportunity to articulate across disciplines and stakeholders the commonalities in the issues that arise. We aim to stimulate debates about how we might work collaboratively to anticipate, manage and prevent future issues. The presentations and discussions will be used to prepare a summary white paper/symposium briefing document to be disseminated more widely.</p
Innovating for a cause: the work and learning required to create a new approach to healthcare for homeless people
No full textInnovation occupies a pivotal place in our understanding of knowledge-based economies, and this is raising questions about sources of innovation, how it originates, and the role played by employees, work practices and learning. This paper explores these issues through case study research into a new approach to providing healthcare for homeless people in England, and by bringing together conceptual insights from the employee-driven innovation literature, and more broadly from social and practice-based learning theory and organisational theory. Applying these perspectives to our case enables illumination of the innovation as a process – not an event – and as an ongoing set of organisational practices that transcend their origins. Through our analysis we argue that the notion of ‘a cause’ is helpful in elucidating the impetus and the commitment to making the innovation happen (and go on happening). Our findings are presented under three themes: ‘establishing a cause’, ‘organising for innovation’, and ‘innovative capability in practice’. Building on these, we have identified five key inter-related dimensions which help conceptualise the work and learning that it took to create and (re-)enact the innovation and that we suggest may have relevance for understanding and characterising other employee-led innovations in and perhaps beyond healthcare
Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research
Get PDFCentralised, compliance-focused approaches to research ethics have been normalised in practice. In this paper, we argue that the dominance of such systems has been driven by neoliberal approaches to governance, where the focus on controlling and individualising risk has led to an overemphasis of decontextualised ethical principles and the conflation of ethical requirements with the documentation of ‘informed consent’. Using a UK-based case study, involving a point-of-care-genetic test as an illustration, we argue that rather than ensuring ethical practice such compliance-focused approaches may obstruct valuable research. We call for an approach that encourages researchers and research communities—including regulators, ethics committees, funders and publishers of academic research—to acquire skills to make morally appropriate decisions, and not base decision-making solely on compliance with prescriptive regulations. We call this ‘ethical preparedness’ and outline how a research ethics system might make space for this approach
Going Beyond Counting First Authors in Author Co-citation Analysis
Get PDFThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Variations on the Author
Get PDF“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
- …
