Health, Medicine and Agency: Recent Episodes
Cambridge University
In what ways do individuals influence the kinds of medical treatment options widely available? The “Health, medicine and agency” research network posits that patient agency has been a central factor in shaping processes of medicalisation and biomedicalisation across a broad range of geographical and cultural contexts. In recent history, patient 'expertise' has been the driving force behind a wide range of social movements in the health sphere, from natural childbirth and euthanasia request to the rejection of compulsory vaccinations and unregulated use of antibiotics. The associated risks to health, fiercely polarized public opinion, and emergent subjectivities that have accompanied such social movements invite critical exploration. “Heath, medicine and agency” brings into focus the growing importance of, and controversies surrounding, individual and patient agency by adopting an interdisciplinary perspective, thereby engaging work in the humanities, social and medical sciences, and creative arts.
Themes
Michaelmas Term 2018: Patient Needs Lent Term 2019: Patient experience
Maud Bracke Whose choice? Family planning, reproductive agency, demography and race in 1950s-70s France
The paper analyses debates on family planning, demography, and gender roles to explore the emergence of new notions of the reproductive subject in 1950s-70s France. Drawing on archives of French and international family planning organisations, it is argued that while the dissemination of family planning ideas in France allowed for the discursive construction of an autonomous reproductive subject, such a subject was framed by a hierarchisation according to 'race', culture, and social class. Focusing on family planning interventions in immigrant groups, the paper argues that the 'responsibilisation' of specifically immigrant women in this context involved constructing the 'modern' reproductive subject in a normative way. In a wider perspective, the paper aims to contribute to an understanding of family planning as an impactful transnational movement, embedded in the global Cold War and the globalisation of demographic debate, and shaping sexual change in post-war Europe.
Fernando Valenzuela
'Telemedicine Is a Struggle Every Week': Invisible Practices of Machine Work in a Telemedicine Unit in Chile
In processes of implementation of telemedicine, as new medical equipment and technological artifacts are produced, tended, and incorporated in health care routines, some aspects of machine work (Strauss et al. 1985) become highly visible and controversial. However, while their impact on the practices and experiences of patients, nurses, and physicians tend to be foregrounded, the different kinds of work done by engineers and other professionals commonly clustered under the umbrella of 'IT support' may be more easily black-boxed. In this presentation, I provide an account of the experiences of members of telemedical IT support units in Chile. Building on the concept of machine work proposed by Strauss and colleagues, I am interested in the different types of backstage work that converge in the development, maintenance, and implementation of medical equipment and software, that make telemedicine possible in this case.
Fernando A. Valenzuela is an Associate Professor in the School of Social Sciences, Universidad Andrés Bello, Chile. Based on a multiple case study in Chile, his current research explores the trajectory and socio-material practices of telehealth. His previous work has focused on the performativity of the social sciences and art history.
Richard Milne and Alessia Costa (Wellcome Genome Campus)
Covid, Cognition and the Spaces of Digital Health
In this paper we present the findings from a study of ethics in practice in the development of digital health technologies, particularly for older adults. We focus on two cases. The first is an analysis of Covid-19 contact tracing tools, drawing on the empirical study of apps and repeated interviews with older adults in the UK and Italy between April and October 2020. The second is the example of digital tools that aim at the early detection of cognitive decline, based on interviews with older adults and a review of developing technology and interviews with academic and corporate technology researchers. We draw on these two cases to examine first, how technology developers and users relate to notions of consent and agency in the use of digital health tools, how these are situated in relation to the material affordances of technology and finally, consider how expectations and practices of digital health inhabit and reshape spaces of health surveillance, healthcare and everyday life.
Dr Alessia Costa is a medical anthropologist and post-doctoral fellow in society and ethics research at the Wellcome Sanger Institute. She received her PhD in 2015 from the School of Oriental and African Studies (SOAS) and has previously worked at King’s College London. Her current research explores the social and ethical implications of data-intensive approaches to the early detection of disease, with a particular focus on Alzheimer’s disease and dementia.
Dr Richard Milne is senior social scientist in the Society and Ethics Research Group at the Wellcome Genome Campus and a senior visiting research fellow in the Department of Public Health and Primary Care at the University of Cambridge, where he is co-lead of the Ethical, Legal and Social Implications theme of the Cambridge Public Health initiative. His research focusses on social and ethical questions associated with the development of new medical technologies, particularly related to Alzheimer’s disease and genomic medicine. He is currently PI on a Wellcome Trust-funded study of how experts and members of the public address ethical questions associated with the development of data-driven tools for the detection of cognitive decline.
crassh #universityofcambridge #health
Dr Jessica Borge’s presentation: 'It should have been a Bonanza': AIDS, Photo Processing, and the Fall of the British-Made Condom. Given at Heath, Medicine and Agency’s Roundtable discussing Birth Control and Sex Education in Cultural and Historical Perspectives on 17/11/2020.
The concept of agency in health and medicine often speaks to the patient experience of medical procedures, products and services. But behind these lie other agents, such as local communities of factory workers, who are also affected by the success or failure of medical products and, further, the solvency of companies that bankroll them. Drawing from her new book on the London Rubber Company, and using the specific case study of condom manufacturing during the AIDS crisis, Jessica Borge describes the final days of the Chingford (North London) factory that made market-leading Durex, and the perplexity of helpless shop floor staff who watched their jobs evaporate despite unprecedented demand for condoms, following a string of bad corporate investments.
Book: Protective Practices: A History of the London Rubber Company and the Condom Business, is published by McGill-Queens University Press. For more information, see www.londonrubbercompany.com.
historyofmedicine #contraception #agency
This is an online event hosted via Zoom. To attend please register on Eventbrite or click the button REGISTER ONLINE. If you have any questions, please email Isabelle Le Gallez The presentations will be recorded.
Speakers Sahanika Ratnayake (PhD candidate, Philosophy, University of Cambridge)
Riana Betzler (McDonnell Postdoctoral Fellow, Department of Philosophy/PNP Program, Washington University in St. Louis)
Abstracts Sahanika Ratnayake Evaluating thoughts, violating agency? Cognitive Behavioural Therapy and Client Agency
Cognitive Behavioural Therapy (CBT) is one of the, if not the, most widespread school of contemporary psychotherapy. CBT claims that the various maladaptive behaviours and negative affect diagnostic of mental illness, stems from certain patterns of distorted thoughts, referred to interchangeably as 'cognitive distortions', 'thought distortions' or 'negative automatic thoughts'. These thought distortions are a key area of intervention for CBT, whose therapeutic approach consists of teaching clients to identify, evaluate and replace distortions with alternate (non-distorted) thoughts. I will argue that the evaluation and replacement of distorted thoughts presents particular ethical challenges for clinicians, particularly with regard to client agency. The talk is based on my work from a chapter on the Ethics of CBT, for the forthcoming OUP Handbook of Psychotherapy Ethics. A preprint is available on the Academia website.
Dr Riana Betzler Empathy and Agency in the Clinical Encounter
Empathy is widely assumed to be an important part of clinical practice. The Association of American Medical Colleges, in its report on learning objectives for medical schools, states: ‘Physicians must be compassionate and empathetic in caring for their patients’ (AAMC, 1998, 4). The Cambridge-Calgary guide to the medical interview, which is widely used in UK medical training, likewise lists empathy as an objective. But recently, the value of empathy has come under significant scrutiny. One of the dark sides of empathy is that it can lead to burnout and empathic distress, where people feel too consumed and overwhelmed by others’ emotions to help them effectively. Avoiding burnout and empathic distress is crucially important, as it is associated with high suicide rates in physicians. The concept of agency has been curiously absent from this debate about burnout, emotional distress, and empathy—although many physicians who experience burnout report feelings of ‘inefficacy’. In this talk, I examine the relationship between empathy and agency in the clinical encounter. Might a sense of agency—a feeling of being able to intervene effectively in the situation—be protective against empathic distress? And what constitutes an effective intervention? Are some forms of empathy—especially those that involve careful attuned listening—conducive to creating senses of agency?
crassh #universityofcambridge #mentalhealth
An introduction to the Health Medicine Agency Research Network at CRASSH, 2018 – 2021 http://www.crassh.cam.ac.uk/programmes/health-medicine-and-agency
Dr Brigit McWade (Lancaster University) Stop ‘Sucking off the Stigma’: Refusing Mental Health Anti-Stigma Campaigns
This paper examines the cultural and political economy of stigma and anti-stigma in mental health. Mental health anti-stigma campaigns present stigma as something produced by myths circulated within media-cultures; myths which can be dissipated through the dissemination of “the facts” of mental illness and personal testimonies of those with lived experience. Rather than focus on the individual stories of “the stigmatized” as Goffman’s work has inspired many to do, I will instead explore how this anti-stigma industry determine the limits of what might be said about mental health and by whom, in effect depoliticizing distress and capitalizing on the further disenfranchisement of Mad-identified people.
Roundtable
Dr Tracey Loughran (Reader in History, University of Essex)
Dr Kate Mahoney (Research Associate in History, University of Essex)
Dr Robert Pralat (Research Associate in Sociology, University of Cambridge)
Professor Diana Rose (Professor of User-Led Research, King’s College London)
This roundtable will focus on the role of collective action and patients’ experiences and involvement in the development of health interventions and care provision. We will consider the following questions: how do patients mobilise and what motivates them to do so, how are they able to instigate change – whether through interacting within dominant/mainstream networks or creating new spaces to challenge them, and how they understand their identity as a 'patient' in the context of their many other identities? To address these questions, we will start with the post-war women's experiences of health and how and why they adopted (or had foisted upon them) the identity of 'patient' at specific times in their lives and the extent to which they perceived this role as entailing particular rights and responsibilities. We will then move to the role of participatory research and patients’ involvement in mental health services today. Finally, we will discuss how different kinds of desire, such as sexual desire and desire to have a child, may affect the demand for medical interventions in the healthcare.
Round table
Dr Cathy Herbrand (Reader in Medical Sociology,Centre for Reproduction Research, Faculty of Health and Life Sciences, De Montfort University) Dr Manuela Perrotta (Lecturer in Technology and Organisation at the School of Business and Management, Queen Mary University of London) Dr Andrea Stockl (Lecturer in the Norwich Medical School, University of East Anglia) Dr Elizabeth Toon (Lecturer in Science Communication in the Centre for the History of Science, Technology and Medicine, University of Manchester)
The concluding round table of the term will be a discussion with four experts reflecting on the role of patient needs in shaping health-related (in)equalities and how these have triggered, or not, the (un)making of medical technologies over time and how they might do so in the future. The discussions will focus on a range of patient needs and technological development in the 20th and 21st century, from the introduction of breast cancer screening post-World War II to time-lapse embryo imaging in assisted reproduction procedures, as well as personal medical devices. This historical lens will provide insights into how contemporary patient needs are met or unmet, and what kind of a dialogue is formed between (in)equalities and needs.