UK national newspapers' representation of cancer patients and their care during the early part of the COVID-19 pandemic: Invoking and undermining solidarity?

During the COVID-19 pandemic media narratives of solidarity often cast nations like the UK as if at war, while acclaiming health-care workers as heroic and beloved. However, this solidarity was often fragile and fleeting, as concerns and criticism about workers, citizens and services also circulated. In this article we explore these dynamics of solidarity in more depth, analysing framings of cancer patient suffering, private and public provision of health care in news media during the early part of the COVID-19 pandemic. We explore how cancer patients were positioned as victims of failure and abandonment by the state and its health-care providers, and how the private health-care system was presented in a saviour role. We conclude by reflecting on the implications of new media's alignment of appeals to solidarity with highly individualised forms of care and the consequences for state-based services founded on principles of solidarity.

Conversation for change: engaging older adults as partners in research on gerotechnology.

There is increasing research and public policy investment in the development of technologies to support healthy aging and age-friendly services in Canada. Yet adoption and use of technologies by older adults is limited and rates of abandonment remain high. In response to this, there is growing interest within the field of gerotechnology in fostering greater participation of older adults in research and design. The nature of participation ranges from passive information gathering to more active involvement in research activities, such as those informed by participatory design or participatory action research (PAR). However, participatory approaches are rare with identified barriers including ageism and ableism. This stigma contributes to the limited involvement of older adults in gerotechnology research and design, which in turn reinforces negative stereotypes, such as lack of ability and interest in technology. While the full involvement of older adults in gerotechnology remains rare, the Older Adults' Active Involvement in Ageing & Technology Research and Development (OA-INVOLVE) project aims to develop models of best practice for engaging older adults in these research projects. In this comment paper, we employ an unconventional, conversational-style format between academic researchers and older adult research contributors to provide new perspectives, understandings, and insights into: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers.

More investments are being made to develop technologies that support healthy aging and age-friendly services in Canada. However, not many older adults use these technologies and those who do tend to stop using them after some time. Gerotechnology is a field of study that combines an interest in gerontology and technology. Within gerotechnology, researchers are learning more about how to encourage older adults to participate in research and the design of new technologies. There are different ways that older adults participate in gerotechnology research, with some approaches being more passive than others. In participatory design and participatory action research projects older adults are encouraged to engage more actively as co-researchers. However, researchers have found that there are some limitations to engaging older adults actively in research, including ageism and ableism, meaning that older adults are perceived to be capable of contributing based on their age and cognitive or physical abilities. These stereotypes have limited how often and how much older adults actually contribute to technology research and design. The Older Adults' Active Involvement in Aging & Technology Research and Development (OA-INVOLVE) project aims to address these gaps. In this comment paper, we present a conversation between academic and older adult researchers who have contributed to OA-INVOLVE. The goal of this conversation is to explore together: (i) motivations to engage in participatory research; (ii) understandings of roles and expectations as research contributors; (iii) challenges encountered in contributing to gerotechnology research; (iv) perceived benefits of participation; and (v) advice for academic researchers.

Unsettling the treatment imperative? Chemotherapy decision-making in the wake of genomic techniques.

Social scientists have argued that a treatment imperative shapes experiences of biomedicine. This is evident within oncology, where discourses of hope are tempered by persistent fears surrounding cancer. It is within this context that genomic decision-making tools are entering routine care. These may indicate that a treatment is not appropriate for a particular disease profile. We draw on qualitative interviews and observations centred on gene expression profiling to consider the implications of this technique for the treatment imperative in early breast cancer. Influenced by sociological perspectives on medical technologies, we discuss how fallibilities of established tools have forged a space for the introduction of genomic testing into chemotherapy decision-making. We demonstrate how high expectations shaped patients' interpretations of this tool as facilitating the 'right' treatment choice. We then unpick these accounts, highlighting the complex relationship between gene expression profiling and treatment decision-making. We argue that anticipations for genomic testing to provide certainty in treatment choice must account for the sociocultural and organisational contexts in which it is used, including the powerful entwinement of chemotherapy and cancer. Our research has implications for sociological perspectives on treatment decision-making and clinical expectations for genomic medicine to resolve the 'problem' of overtreatment.

Accessing targeted therapies for cancer: self and collective advocacy alongside and beyond mainstream cancer charities.

As precision oncology has evolved, patients and their families have become more involved in efforts to access these treatments via fundraising and campaigning that take place outside of the larger cancer charities. In this paper, we explore the solidarities, networks, and emotional work of the UK-based access advocates, drawing on the stories of nine advocates, which included interviews and content analyses of their social media posts and coverage of their case in news, commentary, and fundraising websites. We consider the emotional and knowledge work of building networks that spanned consumerist and activist agendas, forged individual and collective goals, and orientations toward the public, private, and third sectors as part of securing support and access. Through these various practices, the actors we have studied cultivated personal advantage and solidarities with other patients and advocates, and in so doing engaged in self and collective advocacy alongside and beyond mainstream cancer charities.

Diagnostic layering: Patient accounts of breast cancer classification in the molecular era.

Social scientific work has considered the promise of genomic medicine to transform healthcare by personalising treatment. However, little qualitative research attends to already well-established molecular techniques in routine care. In this article we consider women's experiences of routine breast cancer diagnosis in the UK NHS. We attend to patient accounts of the techniques used to subtype breast cancer and guide individual treatment. We introduce the concept of 'diagnostic layering' to make sense of how the range of clinical techniques used to classify breast cancer shape patient experiences of diagnosis. The process of diagnostic layering, whereby various levels of diagnostic information are received by patients over time, can render diagnosis as incomplete and subject to change. In the example of early breast cancer, progressive layers of diagnostic information are closely tied to chemotherapy recommendations. In recent years a genomic test, gene expression profiling, has become introduced into routine care. Because gene expression profiling could indicate a treatment recommendation where standard tools had failed, the technique could represent a 'final layer' of diagnosis for some patients. However, the test could also invalidate previous understandings of the cancer, require additional interpretation and further prolong the diagnostic process. This research contributes to the sociology of diagnosis by outlining how practices of cancer subtyping shape patient experiences of breast cancer. We add to social scientific work attending to the complexities of molecular and genomic techniques by considering the blurring of diagnostic and therapeutic activities from a patient perspective.

Accuracy of a Modified qSOFA Score for Predicting Critical Care Admission in Febrile Children.

BACKGROUND AND OBJECTIVES: The identification of life-threatening infection in febrile children presenting to the emergency department (ED) remains difficult. The quick Sequential Organ Failure Assessment (qSOFA) was only derived for adult populations, implying an urgent need for pediatric scores. We developed and validated a novel, adapted qSOFA score (Liverpool quick Sequential Organ Failure Assessment [LqSOFA]) and compared its performance with qSOFA, Pediatric Early Warning Score (PEWS), and National Institute for Health and Care Excellence (NICE) high-risk criteria in predicting critical care (CC) admission in febrile children presenting to the ED. METHODS: The LqSOFA (range, 0-4) incorporates age-adjusted heart rate, respiratory rate, capillary refill, and consciousness level on the Alert, Voice, Pain, Unresponsive scale. The primary outcome was CC admission within 48 hours of ED presentation, and the secondary outcome was sepsis-related mortality. LqSOFA, qSOFA, PEWS, and NICE high-risk criteria scores were calculated, and performance characteristics, including area under the receiver operating characteristic curve, were calculated for each score. RESULTS: In the initial (n = 1121) cohort, 47 CC admissions (4.2%) occurred, and in the validation (n = 12 241) cohort, 135 CC admissions (1.1%) occurred, and there were 5 sepsis-related deaths. In the validation cohort, LqSOFA predicted CC admission with an area under the receiver operating characteristic curve of 0.81 (95% confidence interval [CI], 0.76 to 0.86), versus qSOFA (0.66; 95% CI, 0.60 to 0.71), PEWS (0.93; 95% CI, 0.90 to 0.95), and NICE high-risk criteria (0.81; 95% CI, 0.78 to 0.85). For predicting CC admission, the LqSOFA outperformed the qSOFA, with a net reclassification index of 10.4% (95% CI, 1.0% to 19.9%). CONCLUSIONS: In this large study, we demonstrate improved performance of the LqSOFA over qSOFA in identifying febrile children at risk for CC admission and sepsis-related mortality. Further validation is required in other settings.

Accomplishing an adaptive clinical trial for cancer: Valuation practices and care work across the laboratory and the clinic.

A new generation of adaptive, multi-arm clinical trials has been developed in cancer research including those offering experimental treatments to patients based on the genomic analysis of their cancer. Depending on the molecular changes found in patients' cancer cells, it is anticipated that targeted and personalised therapies will be made available for those who have reached the end of standard treatment options, potentially extending survival time. Results from these trials are also expected to advance genomic knowledge for patients in the future. Drawing on data from a qualitative study of one such trial in the UK, comprising observations of out-patient clinic appointments, out-patient biopsy procedures, laboratory work, and interviews with practitioners, this paper explores how the clinical and research value of one such trial was accomplished in everyday practice by focussing on the work of clinical trials and laboratory staff across recruitment, laboratory analysis, and results management. In the face of numerous potential set-backs, disappointments and failure, we explore how practitioners worked to balance the need to meet established measures of value such as numbers of patients recruited into the trial, alongside cultivating the value of positive affects for patients by managing their expectations and emotions. This care work was performed primarily by practitioners whose roles have historically been devalued in healthcare practice and yet, as we show, were critical to this process. We conclude by arguing that as complex multi-arm adaptive trials become more commonplace, we need to attend to, and render visible, the dynamic and care-full valuation practices of backstage practitioners through which experimental biomedicine is accomplished, and in doing so show that care both achieves clinical and research value, and is also a series of practices and processes that tends to tissue, patients and staff in the context of ever-present possibility of failure.

Genomic research and the cancer clinic: uncertainty and expectations in professional accounts.

This paper explores clinicians' and scientists' accounts of genomic research in cancer care and the complexities and challenges involved with delivering this work. Contributing to the sociology of (low) expectations, we draw on sociological studies of uncertainty in medicine to explore their accounts of working with uncertainty as part of the management of patient and institutional expectations. We consider their appeals to the importance of modest inquiry and framing of the uncertainties of genomic medicine as normal and at times welcome as they sought to configure professional autonomy and jurisdictions and cultivate an experimental ethos amongst their patients. We argue that these types of uncertainty work [Star, S. L. 1985. "Scientific Work and Uncertainty." Social Studies of Science 15 (3): 391-427] are a key feature of managing expectations at the intersections of genomic research and clinical care.

Polygenic risk-stratified screening for cancer: Responsibilization in public health genomics.

In this article, we examine professional discourse around the development of polygenic risk-stratified screening (PRSS) for cancer. Analyzing a range of contemporary professional literatures from Europe, North America and Australia, we explore how the drive to screen for molecular markers of cancer risk makes professionals, screening recipients and publics responsible, in different ways, for acquiring, curating and analyzing molecular data. Investigating how these responsibilities are invoked in discussions of new data practices, technologies, organizational arrangements, engagement, education and protocols for participation, we argue that agendas for PRSS for cancer are both expanding and stratifying responsibilities. Data collection is to be achieved by intensified responsibilities for including, reassuring and recruiting populations, as well as by opening and enriching the datasets on which models and preventative screening arrangements are based. Enhanced responsibilities for screening recipients and publics are also invoked, not just in relation to personal health but for population health more generally, via research participation and consenting to data re-use in the public interest. Professionals, screening recipients and publics are also to become responsible for moderating expectations of screening according to genomic designations. Together these discourses go beyond individual risk management to extend and diversify the responsibilities of practitioners, screening recipients and publics as public health genomics develops.

Online accounts of gene expression profiling in early-stage breast cancer: Interpreting genomic testing for chemotherapy decision making.

BACKGROUND: Genomic techniques are being developed within oncology and beginning to be experienced within routine cancer care. Little is known about how these tools feature in patients' experiences of treatment decision making. OBJECTIVE: This research explores the ways in which women interpret and discuss gene expression profiling for breast cancer treatment decision making, as articulated within online accounts. DESIGN: This study used a qualitative approach to analyse written exchanges focusing on gene expression profiling in the UK (Oncotype DX test). Accounts are taken from online forums hosted by two UK cancer charity websites, comprising 132 discussion threads from a total of seven forums. Authors qualitatively analysed the data and developed key themes drawing on existing literature from medical sociology. FINDINGS: Women used online spaces to share and discuss results of gene expression profiling. Women interpreted results in the context of indirect experience of cancer treatment, and sociocultural depictions of cancer and chemotherapy. Users largely represented the test positively, emphasizing its ability to "personalize" treatment pathways, though many also pointed to inherent uncertainties with regards the possibility of cancer recurrence. DISCUSSION AND CONCLUSIONS: We highlight the complex contexts in which genomic techniques are experienced, with these shaped by personal biographies, online environments and pervasive cultural narratives of cancer and its treatment. We highlight tensions between the claims of genomic testing to aid treatment decision making and patient reflections on the capability of these techniques to resolve uncertainties surrounding treatment decisions.

Identity, community and care in online accounts of hereditary colorectal cancer syndrome.

Sociological literature has explored how shifts in the point at which individuals may be designated as diseased impact upon experiences of ill health. Research has shown that experiences of being genetically "at risk" are shaped by and shape familial relations, coping strategies, and new forms of biosociality. Less is known about how living with genetic risk is negotiated in the everyday and over time, and the wider forms of identity, communities and care this involves. This article explores these arrangements drawing on online bloggers' accounts of Familial Adenomatous Polyposis (FAP). We show how accounts of genetic risk co-exist with more palpable experiences of FAP in everyday life, notably the consequences of prophylactic surgeries. We consider how the act of blogging represents but also constitutes everyday experiences of hereditary cancer syndrome as simultaneously ordinary and exceptional, and reflect on the implications of our analysis for understanding experiences of genetic cancer risk.

The sociology of cancer: a decade of research.

Biomedicine is often presented as the driving force behind improvements in cancer care, with genomics the latest innovation poised to change the meaning, diagnosis, treatment, prevention and lived experience of cancer. Reviewing sociological analyses of a diversity of patient and practitioner experiences and accounts of cancer during the last decade (2007-17), we explore the experiences of, approaches to and understandings of cancer in this period. We identify three key areas of focus: (i) cancer patient experiences and identities; (ii) cancer risk and responsibilities and (iii) bioclinical collectives. We explore these sociological studies of societal and biomedical developments and how sociologists have sought to influence developments in cancer identities, care and research. We end by suggesting that we extend our understanding of innovations in the fields of cancer research to take better account of these wider social and cultural innovations, together with patients, activists' and sociologists' contributions therein.

Embodied innovation and regulation of medical technoscience: transformations in cancer patienthood.

Biomedical advances are transforming the diagnosis and treatment of disease. Patienthood is also transforming, as patients actively participate in research, innovation and regulation of novel technologies and therapies. In this paper we explore the new kinds of practices that patients are performing in their roles as research subject, co-researchers, donors, campaigners, representatives and consumers of novel stratified therapies. We outline their embodied contributions to clinical trials, biobanks and stratified therapies prior to, during and after having cancer. Exploring how patienthood involves donating more than tissue or data to these developments, we consider their emotional and identity work which informs and shapes the novel diagnostics and therapies being developed. We also consider how this kind of work is stratified according to the social and biological location of participants, and end by reflecting on the implications of our analysis for the organisation and regulation of biomedicine.

Body work in assisted conception: exploring public and private settings.

Body work has been foregrounded in recent sociological writings on health and social care, particularly the emotional labour of patient care. In this article I explore the social and emotional dimensions of body work in assisted conception in private and public National Health Service (NHS) clinics. Drawing on an ethnographic study, I explore how tensions around bodily attributes, treatment costs, clinic performance and the extent of consumer sovereignty were managed in decisions about who to treat and in what manner. In NHS settings, body work involved efforts to standardise and constrain bodies in line with an ethics of justice that included the co-construction of protocols and performance measurement and a strong emphasis upon teamwork and influencing the behaviour of the sector as a whole. In contrast, body work in private settings was more overtly organised around an ethos of individual consumption that emphasised bespoke treatment together with an active critique of the regulator, based on a strong entrepreneurial ethos. Emotional labour in private settings was also more overt. I conclude by exploring the implications of my analysis for the study of assisted conception, the sociology of body work and the further marketisation and deregulation of medicine.

Interdisciplinarity and the social sciences: capital, institutions and autonomy.

Recent discussions about disciplinarity and interdisciplinarity in the social sciences have tended to map and critique methods, theories and approaches to knowledge production, but spend less time exploring the ways in which institutional constraints and personal trajectories produce different kinds of disciplinarity and interdisciplinarity. In this paper we present findings on interdisciplinarity from UK research undertaken as part of an EC project on knowledge, gender and institutions. The research involved a small survey (n = 14), in-depth interviews (n = 5), two focus groups (n = 7) and observation of social scientists in one university department between June 2006 and April 2007. We reflect on the unwillingness of social scientists to confront the conditions of our academic labour in an account of our difficulties with gaining access and respondents in this study, before moving on to consider some of the different ways in which interdisciplinarity and disciplinary commitments were related to particular forms of scientific and symbolic capital. We go on to discuss this in relation to the autonomy of academic teaching-and-research staff compared to contract researchers, and consider the implications of our findings for the future of interdisciplinarity and the social sciences.

Food allergy and food intolerance: towards a sociological agenda.

This article asks what sociological insights an analysis of food allergy and food intolerance might afford. We outline the parameters of debates around food allergy and food intolerance in the immunological, clinical and epidemiological literatures in order to identify analytic strands which might illuminate our sociological understanding of the supposed increase in both. Food allergy and food intolerance are contested and contingent terms and it is salient that the term true food allergy is replete throughout medico-scientific, epidemiological and popular discourses in order to rebuff spurious or 'nonallergic' claims of food-related symptoms. Complexity theory is introduced as a means of gaining analytic purchase on the food allergy debate. The article concludes that the use of this perspective provides a contemporary example of the 'double hermeneutic', in that the meanings and interpretations of contemporary explanations of food allergy are both permeated by, and can be made sense of, through recourse to complexity thinking.

A problem shared...? Teamwork, autonomy and error in assisted conception.

This paper explores the benefits and drawbacks of new team-based approaches to error management in medicine through a case study of teamwork, double witnessing and incident reporting in assisted conception clinics in the UK. This is based upon the analysis of a series of semi-structured interviews with people working in assisted conception clinics and two periods of ethnography in clinics, conducted between 2004 and 2007, as part of an ESRC-funded study on the ethics of assisted conception and embryo research. In common with other studies of practitioners' management of error, I identify a series of tensions around individual and collective autonomy in identifying and preventing error, for the assisted conception team as a whole, and for particular groups within it, notably consultants and embryologists. I found that team-based approaches could create the conditions for error to occur when it undermined independent thinking, responsibility or concentration. There was also a danger that teamwork could come to be associated with particular 'technical' practices or occupational groups, diminishing its relevance and value in clinical settings. I, therefore, conclude that team-based approaches and professional autonomy have their 'dark' as well as their 'light' sides (Vaughan, D. (1999). The dark side of organisations: mistake, misconduct, and disaster. Annual Review of Sociology, 25, 271-305). Errors cannot be prevented in their entirety, but they can be well managed when teamwork and autonomy are complementary. Drawing on Reason (Reason, J. (2004). Beyond the organisational accident: the need for "error wisdom" on the frontline. Quality Safety in Health Care, 12, ii28-ii33), I argue that informed vigilance and intelligent wariness in a necessary compliment to systems-based approaches to error management in assisted conception in particular, and medicine in general.

Assisted conception and the audit culture.

This paper explores the benefits and burdens of regulation in assisted conception, drawing on a series of interviews with practitioners and a range of recent writings on the social and political context of audit and bureaucracy. The process of regulation brings accountability and new competencies to assisted conception professionals, increasing their influence locally and nationally. Early career and laboratory staff are able to draw on protocols and standard operating procedures to improve their practice and enhance their authority within the assisted conception team and the wider institution. However, audit intensifies the focus upon paperwork rather than practice. Measures such as double witnessing can undermine trust amongst professionals, and this can have detrimental effects on performance. Systems such as incident reporting can become overloaded with minor problems, and do not necessarily allow sufficient time for reflection and feedback regarding the best ways of preventing errors. Performance data designed to increase patient choice can undermine it when clinics have to limit their treatment options or change practices to try to 'improve' their results. In conclusion, feedback and discussion between the regulator and a range of staff groups enhances the benefits of regulation and reduces its burdens.