In the Journals

In the Journals, July 2019

This month’s articles would be of specific interest for anyone looking to read up on topics of risk and health, the politics of standardized evidence, the boundaries of science and “pseudoscience”, the politics of health and place, the expansion of online platforms in healthcare, and self-tracking technologies.

Critical Public Health

Misdirection in the Margins of Malaria Elimination Methods (open access)

Koen Peeters Grietens, Charlotte Gryseels, Gert Verschraegan

This paper proposes the term misdirection as a process by which attention is diverted from certain scientific approaches in the malaria elimination paradigm to justify specific methodological, scientific and political decisions. Misdirection, as it applies in magic, creates a sort of tunnel vision in which attention is diverted away from any action occurring outside the frame of the current paradigm. A crucial component of this misdirection process is the global standardization of intervention methodologies operating independent of local social contexts and the perceived impossibility to ‘localize’ such interventions. This conviction requires – and is simultaneously supported by- the production of decontextualized evidence through the application of methodologies aiming at generalizability, in detriment of social context and variability. This process produces pseudo measurements and conclusions that are at the same time real in their adherence to paradigmatically valid methodologies and fake as they either remain empty of empirical significance or whose validity cannot be assessed as we have lost sight of the (local, social, cultural) variation it has decided to ignore. Using the example of research on the effectiveness of bed nets and topical repellents as malaria prevention tools and their expected use within the current paradigm of malaria elimination, we show how the inherent ambiguity of the pseudo allows consequent misdirection processes.

Who Is the Fake One Now? Questions of Quackery, Worldliness and Legitimacy (open access)

Julia Hornberger

This paper shows how in the past quackery was seen as a problem of remoteness and isolation while today it is global connects which provide the nourishing grounds for it. It looks at ‘Dr Elsie’ from rural Bushbuckridge, South Africa who uses a Quantum Resonance Magnetic Analysis Machine as a diagnostic tool to prescribe Chinese supplements. The paper describes how the practicing ‘doctor’ draws approval and a sense of legitimate professionalism from the economic success of her newly established business. Here, pseudo medical business becomes a conduit for social aspirations while she places the ‘burden of proof’ about the legitimacy of what she does with the very same people who the technology she uses deceives. The paper is framed by how the author’s own sense of faithfulness as researcher is challenged by the difficulty to draw a clear line between authentic and pseudo health care.

The Masking and Making of Fieldworkers and Data in Postcolonial Global Health Research Contexts (open access)

Patricia Kingori, Rene Gerrets

This paper centres on the roles and contributions of fieldworkers-local data-collectors in Global Health research in postcolonial contexts. It is informed by two separate ethnographies, conducted in two different East African biomedical research institutions. It discusses how common characterisations of fieldworkers as ‘low-skilled’ and ‘local’ make them attractive to research institutions in two important ways – as community-embedded data-collectors thus facilitating community participation and as being unlikely to fabricate data because they lack the skills to avoid detection. This paper questions these assumptions. It draws on Daston’s idea of the ‘scientific persona’ and Fanon’s concepts of mask-making to explore how fieldworkers construct identities and data within their liminal roles. Fieldworkers create particular pseudo-personae or masks for getting and staying employed. They dumb-down CVs and emphasise their similarities with community members in ways which are partially ‘real’ but also ‘fake’. These constructed identities provide fieldworkers with a persona that allows them to fabricate or modify data without raising suspicions. They frequently engage in practices known as ‘genuine fake’ data fabrication which is data perceived as factually correct and verifiable yet methodologically incorrect, hence it is real and fake in varying degrees. We understand the ‘pseudo’ as the blurry space between real and fake where fieldworkers construct their identities and data. Given the seemingly laudable aims of Global Health, we argue that fieldworkers’ masking and making up data signal the need for greater attention by those designing its research, to better understand and address why and how these practices unfold.

When ‘Substandard’ Is the Standard, Who Decides What Is Appropriate? Exploring Healthcare Provision in Cambodia (open access)

Charlotte Gryseels, Laura Maria Francisca Kuijpers, Jan Jacobs, Koen Peeters Grietens

Cambodia has experienced an impressive economic growth in the last two decades that has not been matched by equal investments in public health care. In combination with other historical and sociocultural fac- tors, this has led to a set of private and public health care practices that divert from standards of clinical good practice. Based on qualitative data collected in malaria and (para)typhoid fever projects, we will describe falsified laboratory test results, dubious diagnostic practices of both unlicensed and licensed doctors, the sales of substandard preparations and combinations of medicines, and even surgeries for commercial interest instead of patient well-being. Patients navigate this complex medical landscape by circumventing costly clinical care – by self- diagnosing and self-medicating, using medicines bought from drug sell- ers – and by actively seeking out clinical interventions when the requiredfinancial investment is perceived to match the illness severity. We will explore what practices constitute healthcare in urban and rural Cambodian settings; what differentiates these practices from clinical‘good practice’ guidelines in conventional medicine; and which mechan- isms patients, drug sellers and medical doctors have developed to navigate a health care system that at the same time enables, encourages, and sanctions such unregulated practices.

Law and Biomedicine and the Making of ‘Genuine’ Traditional Medicines in Global Health (open access)

Emilie Cloatre

This paper explores the joint roles of law and biomedicine in constituting the boundary between legitimate and illegitimate (and genuine and ‘pseudo’) traditional healing. It argues that, as law and biomedicine have grown to share common understandings of the nature of knowledge, they have come to act as converging colonizing forces that displace and alter ‘other’ forms of knowing and ordering. Even as regulatory systems set out to recognize some forms of traditional medicine, they continue to operate on assumptions that disqualify knowledge, products, and actors, that do not resemble their biomedical counterparts. This leaves traditional healing systems potentially having to either operate outside the law or adapt to it by transforming themselves, potentially beyond the point of recognition, to fit better into the systems provided by law and biomedicine. The paper explores the series of dilemma this creates for those seeking to ‘regulate better’ traditional medicine.

Mesmer, the Placebo Effect, and the Efficacy Paradox: Lessons for Evidence Based Medicine and Complementary and Alternative Medicine (open access)

Phoebe Friesen

Drawing on Isabelle Stengers’ discussion of the investigation of Mesmer and the starring role that experimentation plays in the rationality of modern medicine, this paper examines longstanding tensions between the realms of evidence based medicine and complementary and alternative medicine. While evidence based medicine often claims the ability to demarcate between pseudoscience and science, and complementary and alternative medicine often claims that evidence based medicine involves a kind of pseudo-logic that is unable to capture all forms of efficacy, I argue that both of these claims are unfounded. Unpacking the similarities between the commission that evaluated Mesmer’s magnetism and the structure of evidence based medicine, a significant gap is revealed in today’s system of knowledge production within medicine. In order to demonstrate the efficacy of a novel treatment within a randomized controlled trial, the treatment must be shown to improve clinical outcomes significantly more than a placebo control. However, some treatments improve clinical outcomes, but operate primarily through placebo responses, leading to effective medicines being labelled ‘ineffective’ within randomized controlled trials. This phenomenon is known as the efficacy paradox and appears most frequently in chronic conditions and in relation to complementary and alternative medicine, in which placebo responses are common. It is argued that the realms of evidence based medicine and complementary and alternative medicine have much to learn from each other, in that one has neglected the vast potential of producing clinical benefit through placebo responses, while the other has neglected the understanding that can be gained through experimentation.

Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine

Creating ‘Automatic Subjects’: Corporate Wellness and self-Tracking

Christoper Till

The use of self-tracking devices has increased dramatically in recent years with enthusiasm from the public as well as public health officers, healthcare providers and workplaces seeking to instigate behaviour change in populations. Analysis of the ontological principles informing the design and implementation of the Apple Watch and corporate wellness programmes using self-tracking technologies shows that their primary focus is on the capture and control of attention rather than material health outcomes. Health, wellness and happiness have been conflated with productivity, which is now deemed to be dependent on the harnessing of libidinal as well as physical energy. In this context, self-tracking technologies and related corporate wellness interventions have been informed by ‘emotional design’, neuroscientific and behavioural principles which target the ‘pre subjective’ consciousness of individuals through manipulating their habits and neurological functioning. This article draws on the work of Bernard Stiegler to suggest framing self-tracking as ‘industrial temporal objects’, which capture and ‘short circuit’ attention. It is proposed that a central aim is to ‘accumulate the consciousnesses’ of subjects consistent with the methods of a contemporary ‘attention economy’. This new logic of accumulation informs the behavior change strategies of designers of self-tracking devices, and corporate wellness initiatives, taking the form of ‘psychotechnologies’ which attempt to reconstruct active subjects as automatic and reactive ‘nodes’ as part of managed networks.

Online Risk Numbers – Helpful, Meaningless or Simply Wrong? Reflections on Online Risk Calculators

John-Arne Skolbekken

Among the instruments offered to citizens via digital media are risk calculators, aiming at identifying individuals at high risk of various diseases. These calculators present us with both epistemological and socioethical challenges. Tracking the history of individual risk models, this article provides an analysis looking into their content, construction, use and functions. Epistemologically, the notion of risk factor epidemiology frames an approach to public health that goes through the identification of high-risk individuals, providing a way of making public health doable without involving social, cultural and economical factors in the risk assessments. Instead, ethnicity is included in many calculators, serving as boundary objects that enable epidemiologists to avoid addressing its inherent epistemological challenges. Through this notion of individual risk, a discourse is created that provides us with the narrative of the empowered vulnerable global citizen, which is given room to look after her or his risky self, while ignoring the structural and political factors influencing it. In doing so, flawed calculator construction provides ample risk of getting the wrong number.

The Shifting Politics of Patient Activism: From Bio-Sociality to Bio-Digital Citizenship

Alan Petersen, Allegra Clare Schermuly, Alison Anderson

Digital media provide novel tools for patient activists from disease- and condition-specific communities. While those with debilitating conditions or disabilities have long recognised the value of collective action for advancing their interests, digital media offer activists unparalleled opportunities to fulfil their goals. This article explores the shifting politics of ‘activism’ in the increasingly digitally mediated, commercialised context of healthcare, asking: what role have digital media played in the repertoire of activists’ strategies? And, to what extent and how has the use of such media impacted the very concept of activism? Building on sociological ideas on emergent forms of ‘biological citizenship’ and drawing on findings from an analysis of available media, including television and print news reportage, online communications, published histories and campaign material and other information produced by activists in HIV/AIDS and breast cancer communities, we argue that digital media have profoundly shaped how ‘activism’ is enacted, both the goals pursued and the strategies adopted, which serve to broadly align contemporary patient communities’ interests with those of science and business. This alignment, which we characterise as ‘bio-digital citizenship’, has involved a fundamental reorientation of ‘activism’ from less of a struggle for rights to more of a striving to achieve a public profile and attract funding. We conclude by calling for a reconceptualisation of ‘activism’ to more adequately reflect the workings of power in the digital age, whereby the agency and hopes of citizens are central to the workings of political rule.

Health & Place

Growing Old in New Towns: A call for Research on Health and Aging in Planned Urban Environments

Sarah Milton, Alex Mold, Anthea Tinker, Clare Herrick

This paper focuses on the planning of New Towns in the UK in order to explore what the design and planning of urban spaces can tell us about which populations and their health matter and are prioritized, at different points in time. We concentrate on how ageing was conceptualized, and what this tells us about how ageing societies and bodies are accounted for and understood. Through the dynamic evolution of people and place, we can also come to see that what was once viewed as health promoting can become entangled with the causes of ill health. We recommend further multidisciplinary research into the planning of future cities and urban environments.

“Leaning In” and “leaning Back”: Exploring the Spatiality of Telephone Counseling

Danielle Davidson, Gai Harrison

This paper explores telephone counsellors’ experiences of the spatial dimensions of their work. Henri Lefebvre’s spatial triad is applied to explore how counsellors conceive, perceive, and experience the spaces and places of this work. Three key findings are outlined: 1) the purpose built telephone counselling space is experienced as noisy and distracting; 2) counsellors engage in spatial practices to manage their depth of caller interaction; and 3) counsellors construct a mental place to foster intimacy with callers. These findings contribute to a novel conceptualization of telephone counseling, raising implications for how it is performed and understood.

Health, Risk, and Society

Navigating HIV Citizenship: Identities, Risks and Biological Citizenship in the Treatment as Prevention Era (open access)

Ingrid Young, Mark Davis, Paul Flowers, Lisa M. McDaid

The use of HIV Treatment as Prevention (TasP) has radically changed our understandings of HIV risk and revolutionized global HIV prevention policy to focus on the use of pharmaceuticals. Yet, there has been little engagement with the very people expected to comply with a daily pharmaceutical regime. We employ the concept of HIV citizenship to explore responses by people living with HIV in the UK to TasP. We consider how a treatment-based public health strategy has the potential to reshape identities, self-governance and forms of citizenship, domains which play a critical role not only in compliance with new TasP policies, but in how HIV prevention, serodiscordant relationships and (sexual) health are negotiated and enacted. Our findings disrupt the biomedical narrative which claims an end to HIV through scaling up access to treatment. Responses to TasP were framed through shifting negotiations of identity, linked to biomarkers, cure and managing treatment. Toxicity of drugs – and bodies – were seen as something to manage and linked to the shifting possibilities in serodiscordant environments. Finally, a sense of being healthy and responsible, including appropriate use of resources, meant conflicting relationships with if and when to start treatment. Our research highlights how HIV citizenship in the TasP era is negotiated and influenced by intersectional experiences of community, health systems, illness and treatment. Our findings show that the complexities of HIV citizenship and ongoing inequalities, and their biopolitical implications, will intimately shape the implementation and sustainability of TasP.

Lifestyles are Risky, too: The Social Construction of Risk and Empowerment in Prescription Drug Direct-to-Consumer Advertisements

Crystal Adams, Brittany M. Harder

In this article, we examine the portrayal of non-drug related health risks and patient empowerment messages in prescription drug advertising. Little is known about the social construction of non-drug related risks in direct-to-consumer advertisements. In addition, research has failed to investigate to what extent, and how, prescription drug ads use risk messages to construct understandings of empowered medicated patients. To fill these gaps in research, we conducted a content analysis of 136 US prescription drug advertisements that aired on television from 2014–2015. Drawing on the reflexive modernisation framework, we find that ads go beyond disclosing the risks associated with taking the promoted drug by emphasising the risks associated with not taking the prescribed drug. Ads empower patients in two distinct ways, through ‘health empowerment’ and ‘lifestyle empowerment’. These forms of empowerment are portrayed as natural responses to health and lifestyle risks. We also describe two types of ads: medical need and lifestyle ads. The former emphasises health empowerment, and the latter exhibits strong themes of lifestyle empowerment. We extend the findings of previous research by pinpointing how drug companies use risk messages as a strategy to motivate, rather than deter, audiences to learn more about a promoted treatment and by identifying the different marketing strategies used in prescription drug ads based on the lifestyle status of a drug. Our research provides a clearer understanding of the relationship between the presentation of health risks and reflexive modernisation, patient empowerment, and health lifestyles in the risk society.

Journal of the History of Medicine and Allied Sciences

Michael Alberti and the Medical Therapy of the Internal Senses

Andreas Rydberg

In the first half of the eighteenth century, the German physician Michael Alberti was responsible for hundreds of dissertations and other works in medicine. While the bulk of the production reflected the dominating medical topics of his time, he also developed an original focus on the internal senses and their effects on bodily health and disease. Depending on whether internal senses, such as imagination and memory, were cultivated in the right way or not, they could work as powerful remedies or as equally powerful triggers of disease and even death. This article explores this little known strand of early modern medicine in three steps. First, it shows that Alberti’s medicine took form in intimate connection to the Stahlian brand of Pietist medicine. As such, it further elaborated an existing strand of medicine that was intimately connected to German Pietism. Second, it analyses in some detail the role of the internal senses from a pathological and therapeutic perspective as well as examining what kind of persona the physician ought to embody. Lastly, it raises larger questions regarding how to understand this strand of early modern medicine. Rather than approaching it from the perspective of disciplinary history, the article seeks to reconstruct it as a part of what has sometimes been referred to as the early modern cultura animi tradition.

Treatment on Trial: Tanzania’s National Tuberculosis Program, the International Union against Tuberculosis and Lung Disease, and the Road to DOTS, 1977-1991

Christoph Gradmann

Tanzania’s national tuberculosis control program, created in 1977, is credited with having been the main inspiration for the World Health Organization’s Directly Observed Treatment, Short-Course (DOTS) strategy for the control of tuberculosis, which was implemented from 1994. The text focuses on what previously took place in Tanzanian tuberculosis control between 1977 and the early 1990s. What was it that the International Union against Tuberculosis and Lung Disease, which was central in the effort, assisted in creating? In what sense was the program innovative? How could a country whose health system was destroyed by a deepening economic crisis in the 1980s become a lighthouse of tuberculosis control? How much consideration was given to the rise of HIV/AIDS that occurred in parallel? The paper proposes answers to these questions, and suggests that we should see the creation of the Tanzanian program as a laboratory of nascent global health.

‘Close confinement tells very much upon a man’: Prison Memoirs, Insanity and the Late Nineteenth- and Early Twentieth-Century Prison (open access)

Hilary Marland

This article explores prisoners’ observations of mental illness in late nineteenth- and early twentieth-century British prisons, recorded in memoirs published following their release. The discipline of separate confinement was lauded for its potential to improve prisoners’ minds, inducing reflection and reform, when it was introduced in the 1840s, but in practice led to high levels of mental breakdown. In order to maintain the integrity of the prison system, the prison authorities played down incidences of insanity, while prison chaplains lauded the beneficent influence of cellular isolation. In contrast, as this article demonstrates, prisoners’ memoirs offer insights into the prevalence of mental illness in prison, and its poor management, as well as inmates’ efforts to manage mental distress. As the prison system became more closed, uniform and penal after the 1860s, the volume of such publications increased. Oscar Wilde’s evocative prison writings have attracted considerable attention, but he was only one of many prison authors criticizing the penal system and decrying the damage it inflicted on the mind. Exploration of prison memoirs, it is argued, enhances our understanding of experiences of mental disorder in the underexplored context of the prison, highlighting the prisoners’ voice, agency and advocacy of reform.

Medical Anthropology

Ebola and Public Authority: Saving Loved Ones in Sierra Leone (open access)

Melissa Parker, Tommy Matthew Hanson, Ahmed Vandi, Lawrence Sao Babawo, Tim Allen

It is unclear how public authorities shaped responses to Ebola in Sierra Leone. Focusing on one village, we analyze what happened when “staff, stuff, space, and systems” were absent. Mutuality between neighbors, linked to secret societies, necessitated collective care for infected loved ones, irrespective of the risks. Practical learning was quick. Numbers recovering were reported to be higher among people treated in hidden locations, compared to those taken to Ebola Treatment Centres. Our findings challenge positive post-Ebola narratives about international aid and military deployment. A morally appropriate people’s science emerged under the radar of external scrutiny, including that of a paramount chief.

Social Science and Medicine

Scaling Up: The Politics of Health and Place (open access)

Clara Bambra, Katherine E. Smith, Jamie Pearce

Research into the role of place in shaping inequalities in health has focused largely on examining individual and/or localised drivers, often using a context-composition framing. Whilst this body of work has advanced considerably our understanding of the effects of local environments on health, and re-established an awareness of the importance of place for health, it has done so at the expense of marginalising and minimising the influences of macro political and economic structures on both place and health. In this paper, we argue that: (i) we need to scale up our analysis, moving beyond merely analysing local horizontal drivers to take wider, vertical structural factors into account; and (ii) if we are serious about reducing place-based health inequalities, such analysis needs be overtly linked to appropriate policy levers. Drawing on three case studies (the US mortality disadvantage, Scotland’s excess mortality, and regional health divides in England and Germany) we outline the theoretical and empirical value of taking a more political economy approach to understanding geographical inequalities in health. We conclude by outlining the implications for future research and for efforts to influence policy from ‘scaling up’ geographical research into health inequalities.

The Commensuration of Pain: How Nurses Transform Subjective Experience into Objective Numbers (open access)

Lars E.F. Johannessen

Commensuration—the transformation of different qualities into a common metric—has recently received increased scholarly attention. While mostly studied at the meso- or macroscale, this article extends the focus to microscale commensuration. Based on fieldwork in a Norwegian emergency medical service, the article analyses how nurses rated patients’ pain intensity on a scale from zero to ten. While nurses were instructed to score pain by combining patients’ self-report with their own ‘objective’ assessment, the article finds that their actual assessments relied almost solely on the latter. After exploring nurses’ objections against the use of self-report, the article reconstructs the principles, methods and beliefs underlying nurses’ ‘objective’ approach to pain scoring. In so doing, the article demonstrates how a fundamental aspect of human experience was filtered through nurses’ professional gaze—to the advantage of some patients and the disadvantage of others. The article also advances theorising on microscale commensuration, thus providing guidance for future studies of how the world is transformed through the everyday production of numbers.

Caring For or Caring With? Production of Different Caring Relationships and the Construction of Time

Yves Habran, Nicolas Battard

In relational ontologies, care is considered as relationally constructed in practices. It is thus important to understand how caring relationships are produced. However, there are different ways of producing these caring relationships. This article contrasts the production of caring relationships in a logic of substitution and in a logic of care in a home-based strengthened educational childcare service. While most studies focus on the implications of different models of care for carers-carees dyadic interpersonal relationships, this study also considers how the design and use of tools, as well as relationships with third parties involved in care practices, differ within these two logics. This study also shows that they imply different temporal conceptions and orientations.

Sociology of Health and Illness

On the body of the Consumer: Performance‐Seeking with Wearables and Health and Fitness Apps

Mariann (Maz) Hardey

Contributing to critical digital health research and the sociology of health consumption, this study investigates the phenomenon of self‐tracking and interpretation of consumer data via wearable technology and mobile fitness software applications (apps). It critically analyses qualitative data collected from members of running communities in the UK who are heavy users of apps and wearables. The study seeks to understand the meaning and practise of long‐term use of apps and wearables targeted at consumers interested in tracking fitness, and the collection of personal health information over time. The paper offers an interpretative perspective on runners as performance‐seeking fitness consumers engaged in long‐term self‐management of health. These consumers are driven by a profound motivation to visualise and embody a long‐term state of fitness. Participants were also hyper‐aware of advertising and promotional methods used to engage consumers. The findings raise concerns about the validity of personal fitness data, and how its collection promises improved personal health while visually promoting sought‐after fit bodies. Further research is required to understand the transformative impact of fitness‐tracking and how individuals negotiate personal classifications of health.

Beyond Health: Medicines, Food Supplements, Energetics and the Commodification of Self‐Performance in Maputo (open access)

Carla F. Rodrigues, Noémia Lopes, Anita Hardon

With an increasing range of products in global and local markets, more options are available for individuals to enhance their image and their (cognitive, social and physical) performance. These ‘performance consumptions’ relate to ideals of well‐being and improvement, and are based on constructed desires, expectations and needs that go beyond the (often blurred) dichotomy of health and illness. Drawing from mixed‐methods research in Maputo, Mozambique, this paper discusses individuals’ use of medicines and other substances – pharmaceuticals, food supplements, traditional herbs, cosmetics and energy drinks – for managing different aspects of their everyday lives. Through an overview of the main consumption practices, we explore the underlying purposes and strategies of users, and the perceived legitimacy and risks involved when using a variety of products accessible through formal and informal exchange channels. From tiredness to sexual and aesthetic management, we show how the body becomes the locus of experimentation and investment to perform in accordance with socially expected roles, individual aspirations and everyday tasks. With insights from individuals’ accounts in Maputo, we aim to add to discussions on pharmaceuticalisation of body management by showing how the emergence of new performance consumptions is articulated with the reconfiguration of more ‘traditional’ consumption practices.

Documenting Diagnosis: Testing, Labelling, and the Production of Medical Records in an Autism Clinic

Jason Turowetz, Douglas W. Maynard

All diagnosis depends on communication between doctors and patients. This is especially so with behavioural disorders such as autism, where structured interactions involving clinicians and children (e.g. standardised tests) play a key role in diagnosing the condition. Although such interactions are collaborative, we find that when reporting test results, clinicians, following administrative protocols, routinely gloss over the embodied interactions constitutive of testing, such that autism is predicated as an inherent feature of the child. In ethnomethodological terms, this is related to the way that “accounts” (Garfinkel 1967), including diagnoses, are reflexively related to the taken‐for‐granted practices that make them objectively reportable in prevailing professional terms. These practices include how the clinicians themselves interact with children they examine, with other professionals, and with the instruments used to test a child. Examining video footage of a multi‐stage autism evaluation, along with the medical report rendering the child’s diagnosis, we show how reporting practices, while addressing the administrative features of standardised testing and diagnosis, can also be examined for their grounding in an environment of tacit matters usually unavailable for inspection. We conclude by asking whether, and how, oral and written reports might re‐situate children in the concreteness of their social environments.

Professional Autonomy and Surveillance: The Case of Public Reporting in Cardiac Surgery (open access)

Mark Exworthy, Jonathan Gabe, Ian R. Jones, Glenn Smith

Professional autonomy has come under greater scrutiny due to managerialism, consumerism, information and communication technologies (ICT), and the changing composition of professions themselves. This scrutiny is often portrayed as a tension between professional and managerial logics. Recently, medical autonomy has increasingly been shaped in terms of transparency, where publication of clinical performance (via ICT) might be a more pervasive form of surveillance. Such transparency may have the potential for a more explicit managerial logic but is contested by clinicians. This paper applies notions of surveillance to public reporting of cardiac surgery, involving the online publication of mortality rates of named surgeons. It draws on qualitative data from a case‐study of cardiac surgeons in one hospital, incorporating interviews with health care managers and national policymakers in England. We examine how managerial logics are mediated by professional autonomy, generating patterns of enrolment, resistance and reactivity to public reporting. The managerial ‘gaze’ of public reporting is becoming widespread but the surgical specialty is accommodating it, leading to a re‐assertion of knowledge, based on professional definitions. The paper assesses whether this form of surveillance is challenging to or being assimilated by the medical profession, thereby recasting the profession itself.

Expanded Definitions of the ‘Good Death’? Race, Ethnicity and Medical Aid in Dying

Cindy L. Cain, Sara McCleskey

The range of end‐of‐life options is expanding across North America. Specifically, medical aid in dying (AID), or the process by which a patient with a terminal illness may request medical assistance with hastening death, has recently become legal in eight jurisdictions in the United States and all of Canada. Debates about AID often rely on cultural constructions that define some deaths as ‘good’ and others as ‘bad’. While research has found commonalities in how patients, family members and health care providers define good and bad deaths, these constructions likely vary across social groups. Because of this, the extent to which AID is seen as a route to the good death also likely varies across social groups. In this article, we analyse qualitative data from six focus groups (n = 39) across three racial and ethnic groups: African American, Latino and white Californians, just after a medical AID law was passed. We find that definitions of the ‘good death’ are nuanced within and between groups, suggesting that different groups evaluate medical AID in part through complex ideas about dying. These findings further conversations about racial and ethnic differences in choices about end‐of‐life options.

A Tale of Two Epidemics: Gay Men’s Mental Health and the Biomedicalisation of HIV Prevention and Care in Toronto

Mark Gaspar, Zack Marshall, Ricky Rodrigues, Barry D. Adam, David J. Brennan, Trevor A. Hart, Daniel Grace

There is mounting urgency regarding the mental health of gay, bisexual and other men who have sex with men (GBM). We examined how GBM are understanding the relationship between HIV and their mental health given the increasing biomedicalisation of HIV prevention and care. Our Grounded Theory analysis derived from qualitative interviews with 24 GBM living in Toronto, Canada, including both HIV‐negative and HIV‐positive men. Participants understood biomedical advances, such as undetectable viral load and pre‐exposure prophylaxis (PrEP), as providing some relief from HIV‐related distress. However, they offered ambivalent perspectives on the biomedicalisation of HIV. Some considered non‐HIV‐specific stressors (e.g. unemployment, racial discrimination) more significant than HIV‐related concerns. These men expressed HIV‐related distress as being under control due to biomedical advances or as always negligible when compared to non‐HIV‐specific stressors. Others emphasised the ongoing mental health implications of HIV (e.g. enduring risk and stigma). We describe a tension between optimistic responses to biomedicine’s ability to ease the psychosocial burdens associated with HIV and the inability for biomedicine to address the social and economic determinants driving the dual epidemics of HIV and mental distress amongst GBM. We argue for more socio‐material analysis over further sexual behavioral analysis of GBM mental health disparities.

Technology and Culture

Engineering Health: Technologies of Immunization in China’s Wartime Hinterland, 1937–4

Mary Augusta Brazelton

During the Second Sino-Japanese War, the technological project of mass immunization united state health administrations and international aid organizations seeking to prevent epidemics in unoccupied China’s wartime hinterland. This article examines a joint wartime effort between the Chinese government’s National Epidemic Prevention Bureau and the League of Nations Health Organization to manufacture and distribute vaccines against smallpox, cholera, and other diseases in northwest China. The hardships of war presented challenges to the development of large-scale immunization, but also led to the establishment of international aid programs that helped Chinese microbiologists acquire standard cultures, animals, and equipment. Vaccination provided a means for the beleaguered Nationalist government to quell epidemics and resist the Japanese; subsequent state involvement in the process of managing transport of vaccines, organizing and training vaccinators, and mandating the shots suggests the significance of mass immunization, as well as its reliance on technological systems in which vaccines embodied emerging biomedical standards that the state sought to institutionalize.

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