Muddling through with non-compliant biology: An ethnographic investigation the meaning and practice of evidence in an NHS thyroid disease out-patients clinic.

Thyroid diseases number amongst the most widespread and chronic conditions in the population. They are symptomatically vague, difficult to diagnose, and are more prevalent in women than men. Since the hormones produced by the gland control cell metabolism in the body, symptoms of glandular failure are elusively diverse and non-specific and are easily attributable to other diseases or no disease at all. Consequently, a definitive diagnosis conventionally relies on a blood test to measure the function of the gland. However, as observed in the clinic, such a diagnosis is often partial and is not compatible with the clinical symptoms some patients present. Predictably, many patients feel such tests are inaccurate measures of the extent of their disease and do not match their own interpretations of clinical symptoms or experiences of suffering. In response, many clinicians express concern that patients are incorrectly attributing their symptoms to thyroid disease and as a consequence are demanding treatments which are not necessary This qualitative study investigates the indeterminate aspects of thyroid dysfunction by exploring how a contest over meaning is manifest in the clinic, particularly with regards to how embodied clinical symptoms and disembodied biochemical measures are used as evidence for and against decisions over diagnosis and treatment. The thesis identifies that, due to the vague nature of both symptomatic and biochemical evidence, thyroid disease is a location where medicalisation is impossible. Subsequently, using the available discourses of the clinic, specifically EBM and patient centred medicine, clinicians and patients construct various orders of thyroid biology and pathology, in an attempt to satisfy diagnostic strategies and treatment needs. As a consequence the thesis can add to the analytical purchase of the anthropologist Paul Rabinow's concept of biosociality and theories of governmentality more generally. That is, it demonstrates how practices of re-making thyroid biology are possible, not because of a new found molecular control over thyroid biology, but due to the non-compliant nature of thyroid biology and the technical deficiency of current diagnostic and treatment strategies deployed to attend to it within the clinic

Investigating Collaborative Data Practices: a Case Study on Artificial Intelligence for Healthcare Research

Developing artificial intelligence (AI) tools for healthcare is a collaborative effort, bringing data scientists, clinicians, patients and other disciplines together. In this paper, we explore the collaborative data practices of research consortia tasked with applying AI tools to understand and manage multiple long-term conditions in the UK. Through an inductive thematic analysis of 13 semi-structured interviews with participants of these consortia, we aimed to understand how collaboration happens based on the tools used, communication processes and settings, as well as the conditions and obstacles for collaborative work. Our findings reveal the adaptation of tools that are used for sharing knowledge and the tailoring of information based on the audience, particularly those from a clinical or patient perspective. Limitations on the ability to do this were also found to be imposed by the use of electronic healthcare records and access to datasets. We identified meetings as the key setting for facilitating exchanges between disciplines and allowing for the blending and creation of knowledge. Finally, we bring to light the conditions needed to facilitate collaboration and discuss how some of the challenges may be navigated in future work.Comment: 17 page

Indigenous-led precision public health: a new starting point

Precision public healthcare has been applied to bring about positive change, narrowing the gap in healthcare inequity for Aboriginal peoples. Three such examples include the Mappa, Lyfe Languages, and Pilbra Faces projects, which were all developed through engagement and codesign with Indigenous Australians and each meet a distinct critical need. The Mappa project offers patients and healthcare providers with the necessary geographical information to navigate and maximally utilize available healthcare services. Lyfe Languages is a community driven translational tool that empowers indigenous languages in healthcare. The Pilbara Faces project aims to create a database of clinical measurements enabling better disease diagnosis and monitoring. These three projects have been integrated into a multi-faceted precision public health program, the Healthy Pilbara Project Initiative, acting synergistically to improve the lives of Aboriginal peoples living in Western Australia

Series: Public engagement with research. Part 1: The fundamentals of public engagement with research

BACKGROUND: In the first of a four-part series, we describe the fundamentals of public engagement in primary care research. OBJECTIVES: The article's purpose is to encourage, inform and improve the researcher's awareness about public engagement in research. For a growing number of researchers, funders and patient organisations in Europe, public engagement is a moral and ethical imperative for conducting high-quality research. DISCUSSION: Starting with an explanation of the role of public engagement in research, we highlight its diversity and benefits to research, researchers and the public members involved. We summarise principles of good practice and provide valuable resources for researchers to use in their public engagement activities. Finally, we discuss some of the issues encountered when researchers collaborate with members of the public and provide practical steps to address them. Case studies of real-life situations are used to illustrate and aid understanding. CONCLUSION: We hope this article and the other papers in this series will encourage researchers to better consider the role and practice of public engagement and the potential added value to research that collaborating with the public could provide

Socio-cultural influences on the behaviour of South Asian women with diabetes in pregnancy: qualitative study using a multi-level theoretical approach

BACKGROUND: Diabetes in pregnancy is common in South Asians, especially those from low-income backgrounds, and leads to short-term morbidity and longer-term metabolic programming in mother and offspring. We sought to understand the multiple influences on behaviour (hence risks to metabolic health) of South Asian mothers and their unborn child, theorise how these influences interact and build over time, and inform the design of culturally congruent, multi-level interventions. METHODS: Our sample for this qualitative study was 45 women of Bangladeshi, Indian, Sri Lankan, or Pakistani origin aged 21-45 years with a history of diabetes in pregnancy, recruited from diabetes and antenatal services in two deprived London boroughs. Overall, 17 women shared their experiences of diabetes, pregnancy, and health services in group discussions and 28 women gave individual narrative interviews, facilitated by multilingual researchers, audiotaped, translated, and transcribed. Data were analysed using the constant comparative method, drawing on sociological and narrative theories. RESULTS: Key storylines (over-arching narratives) recurred across all ethnic groups studied. Short-term storylines depicted the experience of diabetic pregnancy as stressful, difficult to control, and associated with negative symptoms, especially tiredness. Taking exercise and restricting diet often worsened these symptoms and conflicted with advice from relatives and peers. Many women believed that exercise in pregnancy would damage the fetus and drain the mother's strength, and that eating would be strength-giving for mother and fetus. These short-term storylines were nested within medium-term storylines about family life, especially the cultural, practical, and material constraints of the traditional South Asian wife and mother role and past experiences of illness and healthcare, and within longer-term storylines about genetic, cultural, and material heritage - including migration, acculturation, and family memories of food insecurity. While peer advice was familiar, meaningful, and morally resonant, health education advice from clinicians was usually unfamiliar and devoid of cultural meaning. CONCLUSIONS: 'Behaviour change' interventions aimed at preventing and managing diabetes in South Asian women before and during pregnancy are likely to be ineffective if delivered in a socio-cultural vacuum. Individual education should be supplemented with community-level interventions to address the socio-material constraints and cultural frames within which behavioural 'choices' are made

Setting the agenda for social science research on the human microbiome

The human microbiome is an important emergent area of cross, multi and transdisciplinary study. The complexity of this topic leads to conflicting narratives and regulatory challenges. It raises questions about the benefits of its commercialisation and drives debates about alternative models for engaging with its publics, patients and other potential beneficiaries. The social sciences and the humanities have begun to explore the microbiome as an object of empirical study and as an opportunity for theoretical innovation. They can play an important role in facilitating the development of research that is socially relevant, that incorporates cultural norms and expectations around microbes and that investigates how social and biological lives intersect. This is a propitious moment to establish lines of collaboration in the study of the microbiome that incorporate the concerns and capabilities of the social sciences and the humanities together with those of the natural sciences and relevant stakeholders outside academia. This paper presents an agenda for the engagement of the social sciences with microbiome research and its implications for public policy and social change. Our methods were informed by existing multidisciplinary science-policy agenda-setting exercises. We recruited 36 academics and stakeholders and asked them to produce a list of important questions about the microbiome that were in need of further social science research. We refined this initial list into an agenda of 32 questions and organised them into eight themes that both complement and extend existing research trajectories. This agenda was further developed through a structured workshop where 21 of our participants refined the agenda and reflected on the challenges and the limitations of the exercise itself. The agenda identifies the need for research that addresses the implications of the human microbiome for human health, public health, public and private sector research and notions of self and identity. It also suggests new lines of research sensitive to the complexity and heterogeneity of human–microbiome relations, and how these intersect with questions of environmental governance, social and spatial inequality and public engagement with science

Liminality in Practice: A Case study in Life Sciences Research

Contemporary health challenges (e.g. diabetes, climate change, antimicrobial resistance) are underpinned by complex interrelationships between behavioral, cultural, social, environmental and biological processes. Current experimental systems are only partially relevant to the problems they investigate, but aspirations to embed interdisciplinary working and community engagement into life scientists’ work inresponse to this partiality have proven difficult in practice. This paper explores one UK university-based life sciences initiative as it seeks to develop modes of working which respond to this complexity. Drawing on ‘liminal hotspots’ as a sensitizing concept, we explore how participating academics articulate complex problems, knowledge-making, interdisciplinary working and community engagement. Our analysis shows they become recurrently ‘trapped’ (institutionally and epistemologically) between fixed/universalized cosmologies of biology/disease, and more contemporary cosmologies in which biology and disease are conceptualized as situated and evolving. Adopting approaches to community organizing based on ‘process pragmatism’ we propose ways in which life scientists might radically reorganise their practice and move beyond current limiting enactments of interdisciplinary and community engaged working. In doing so we claim that the relevance and ‘humanness’ of life scienceresearch will be increased

What does the literature mean by social prescribing? A critical review using discourse analysis.

Social prescribing (SP) seeks to enhance the role of the voluntary and community sector in addressing patients' complex needs in primary care. Using discourse analysis, this review investigates how SP is framed in the scientific literature and explores its consequences for service delivery. Theory driven searches identified 89 academic articles and grey literature that included both qualitative and quantitative evidence. Across the literature three main discourses were identified. The first one emphasised increasing social inequalities behind escalating health problems and presented SP as a response to the social determinants of health. The second one problematised people's increasing use of health services and depicted SP as a means of enhancing self-care. The third one stressed the dearth of human and relational dimensions in general practice and claimed that SP could restore personalised care. Discourses circulated unevenly in the scientific literature, conditioned by a wider political rationality which emphasised individual responsibility and framed SP as 'solution' to complex and contentious problems. Critically, this contributed to an oversimplification of the realities of the problems being addressed and the delivery of SP. We propose an alternative 'care-based' framing of SP which prioritises (and evaluates) holistic, sustained and accessible practices within strengthened primary care systems

Impact on decisions to start or continue medicines of providing information to patients about possible benefits and/or harms: A systematic review and meta-analysis

Background. The impact of providing information about medicines to patients on decisions about starting or continuing them is unknown. Purpose. To estimate the impact on decisions to start or continue medicines, of providing information to patients about possible benefits and/or harms. Data Sources. Electronic searches from 1980 to October 2010; reference and citation searches of included studies. Study Selection. Two investigators assessed studies' eligibility against inclusion criteria: randomized or pseudorandomized trials; participants older than 16 years and deciding for themselves; one group received information about possible benefits and/or harms of a potentially beneficial medicine, compared with another who did not; d) a measure of decision about starting or continuing a medicine. Data Extraction. One investigator extracted all data, checked by a second. Data Synthesis. Eight studies were included, covering a range of medicines. There was no consistent impact of interventions on decisions about whether to start or continue medicines (pooled odds ratio 1.08; 95% confidence interval [CI], 0.69–1.70; P = 0.74). Among those who received more information, knowledge was increased (pooled mean difference 8.47; 95% CI 2.17–14.77; P = 0.008), and decisional conflict was reduced (pooled mean difference -0.15; 95% CI -0.24 to -0.06; P = .001). Limitations. A small number of studies across different clinical contexts, of uncertain heterogeneity, were included. Conclusions. Providing information to patients about possible benefits and/or harms has no consistent effect on the number who decide to start or continue medicines, although it increases patients' knowledge and reduces their decisional conflict

Managing suspended transition in medicine and law: Liminal hotspots as resources for change

This article explores occasions when professionals in law enforcement and medicine find themselves trapped amidst the paradoxical demands of diagnostic/investigative practice. By juxtaposing research into the experiences of police officers charged with interviewing children who are the alleged victims of sexual abuse, and clinicians tasked with diagnosing and managing contested cases of thyroid disease, the paper develops an understanding of such practice paradoxes as occasions of stalled transition, or liminal hotspots. Drawing on a process theoretical understanding of liminality, the analysis explores the personal, experiential, and affective efficacy of the epistemological framework that both practices share. While liminal hotspots denote paradox stalemates, the paper argues that they are also responsible for recurrent instants of temporary affective unsettledness, and as such can provoke novel thinking and agency towards innovation in practice areas notoriously resistant to change and improvement. Systematizing this property could turn them into resources for change