Author:
Grew, Julie Christina
Svendsen, Mette Nordahl
Abstract:
Remote monitoring of implantable cardioverter defibrillator (ICD) patients links patients wirelessly to the clinic via a box in their bedroom. The box transmits data from the ICD to a remote database accessible to clinicians without patient involvement. Data travel across time and space; clinicians can monitor patients from a distance and instantly know about cardiac events. Based on ethnographic fieldwork in two Danish hospitals, this article explores the configuration of the wireless ICD patient by following a number of patients through hospitalisation, implantation, in-clinic follow-up, and remote monitoring. Wireless therapy, we argue, scripts the patient as data. In high-tech clinical encounters, data are enacted as extensions and copies of the patient, and even proxies that, in patients’ experiences, may turn into identity thieves. In illuminating the multiple positions that data take in such clinical encounters and in patients’ experiences we discuss the ambiguities that arise when patients go wireless.
Document:
https://doi.org/10.1177/1357034X16663005
References:
| Agic, H (2012) Hope Rites – An Ethnographic Study of Mechanical Help-Heart Implantation Treatment. Linköping Studies in Arts and Science 550. Linköping: Linköping University Press. Google Scholar |
| Akrich, M (1992) The de-scription of technical objects. In: Bijker, W, Law, J (eds) Shaping Technology/Building Society. Cambridge, MA: MIT Press. Google Scholar |
| Amoore, L (2011) Data derivatives: On the emergence of a security risk calculus for our times. Theory, Culture & Society 28(6): 24–43. Google Scholar | SAGE Journals | ISI |
| Bennett, CJ (2011) In defence of privacy: The concept and the regime. Surveillance & Society 8(4): 485–496. Google Scholar | Crossref |
| Berson, J (2015) Computable Bodies: Instrumented Life and the Human Somatic Niche. London: Bloomsbury. Google Scholar |
| Bjørn, P, Markussen, R (2013) Cyborg heart: The affective apparatus of bodily production of ICD patients. Science & Technology Studies 26(2): 14–28. Google Scholar |
| Black, D (2014) Where bodies end and artefacts begin: Tools, machines and interfaces. Body & Society 20(1): 31–60. Google Scholar | SAGE Journals | ISI |
| Blaxter, M (2009) The case of the vanishing patient? Image and experience. Sociology of Health & Illness 31(5): 762–778. Google Scholar | Crossref | Medline | ISI |
| Clark, JA, Mishler, EG (1992) Attending to patients’ stories: Reframing the clinical task. Sociology of Health & Illness 14(3): 344–372. Google Scholar | Crossref | ISI |
| Clarke, A (2005) Situational Analysis: Grounded Theory after the Postmodern Turn. Thousand Oaks, CA: Sage. Google Scholar | Crossref |
| Crawford, CS (2015) Body image, prostheses, phantom limbs. Body & Society 21(2): 221–244. Google Scholar | SAGE Journals | ISI |
| Dalli, J (2011) E-health. Government Gazette, EU Health Special – Telehealth Innovations for Europe, October, p. 121. Google Scholar |
| Danish Health and Medicines Authority (2014) Pacemakere, ICD’er og andre avancerede pacemakersystemer. Copenhagen: Danish Health and Medicines Authority. Google Scholar |
| Danish Society of Cardiology (2012) National Cardiologisk Behandlingsvejledning. Available at: http://nbv.cardio.dk. Google Scholar |
| Elmer, G (2003) A diagram of panoptic surveillance. New Media & Society 5(2): 231–247. Google Scholar | SAGE Journals | ISI |
| Fleck, L (1979) Genesis and Development of a Scientific Fact. Chicago, IL: University of Chicago Press. Google Scholar |
| Foucault, M (1977) Discipline and Punish: The Birth of the Prison. London: Penguin. Google Scholar |
| Frank, AW (1992) Twin nightmares of the medical simulacrum. In: Stearns, W, Chaloupka, W (eds) Jean Baudrillard: The Disappearance of Art and Politics. London: Macmillan. Google Scholar | Crossref |
| Franklin, S (2007) Dolly Mixtures: The Remaking of Genealogy. Durham, NC: Duke University Press. Google Scholar | Crossref |
| Gross, S (2012) Biomedicine inside out: An ethnography of brain surgery. Sociology of Health & Illness 34(8): 1170–1183. Google Scholar | Crossref | Medline | ISI |
| Haggerty, KD, Ericson, RV (2000) The surveillant assemblage. British Journal of Sociology 51(4): 605–622. Google Scholar | Crossref | Medline | ISI |
| Haraway, DJ (1991) Simians, Cyborgs, and Women: The Reinvention of Nature. London: Free Association Books. Google Scholar |
| Latour, B (1987) Science in Action: How to Follow Scientists and Engineers Through Society. Cambridge, MA: Harvard University Press. Google Scholar |
| Lee, S (2013) American DNA: The politics of potentiality in a genomic age. Current Anthropology 54(7): 77–86. Google Scholar | Crossref | ISI |
| Lehoux, P (2008) The duality of health technology in chronic illness: How designers envision our future. Chronic Illness 4: 85–97. Google Scholar | SAGE Journals |
| Lupton, D (2012) M-health and health promotion: The digital cyborg and surveillance society. Social Theory & Health 10(3): 229–244. Google Scholar | Crossref | ISI |
| Lupton, D (2013) Quantifying the body: Monitoring and measuring health in the age of mHealth technologies. Critical Public Health 23(4): 393–403. Google Scholar | Crossref | ISI |
| Lupton, D, Jutel, A (2015) ‘It’s like having a physician in your pocket!’ A critical analysis of self-diagnosis smartphone apps. Social Science & Medicine 133: 128–135. Google Scholar | Crossref | Medline | ISI |
| Lyon, D (2007) Surveillance Studies: An Overview. Cambridge: Polity Press. Google Scholar |
| Lyon, D (2010) Surveillance, power and everyday life. In: Kalantzis-Cope, P, Gherab-Martin, K (eds) Emerging Digital Spaces in Contemporary Society. Basingstoke: Palgrave Macmillan. Google Scholar | Crossref |
| Lyon, D (2014) Surveillance, Snowden, and Big Data: Capacities, consequences, critique. Big Data and Society July–December: 1–13. Google Scholar |
| Mair, M, Greiffenhagen, C, Sharrock, WW (2015) Statistical practice: Putting society on display. Theory, Culture & Society 33(3): 51–77. Google Scholar | SAGE Journals | ISI |
| Matchett, M, Sears, SF, Hazelton, G, Kirian, K, Wilson, E, Nekkanti, R (2009) The implantable cardioverter defibrillator: Its history, current psychological impact and future. Expert Review of Medical Devices 6(1): 43–50. Google Scholar | Crossref | Medline | ISI |
| Mattingly, C (1998) Healing Dramas and Clinical Plots: The Narrative Structure of Experience. Cambridge: Cambridge University Press. Google Scholar | Crossref |
| Mol, A (2002) The Body Multiple: Ontology in Medical Practice. London: Duke University Press. Google Scholar | Crossref |
| Mort, M, Finch, T, May, C (2009) Making and unmaking telepatients: Identity and governance in new health technologies. Science, Technology, & Human Values 34(1): 9–33. Google Scholar | SAGE Journals | ISI |
| Newman, S (2011) Some issues regarding the introduction of telehealth innovations in Europe. Government Gazette, EU Health Special – Telehealth Innovations for Europe, October, p.123. Google Scholar |
| Oudshoorn, N (2008) Diagnosis at a distance: The invisible work of patients and health care professionals in cardiac telemonitoring technology. Sociology of Health & Illness 30(2): 272–288. Google Scholar | Crossref | Medline | ISI |
| Oudshoorn, N (2012) How places matter: Telecare technologies and the changing spatial dimensions of healthcare. Social Studies of Science 42(1): 121–142. Google Scholar | SAGE Journals | ISI |
| Oudshoorn, N (2015) Sustaining cyborgs: Sensing and tuning agencies of pacemakers and implantable cardioverter defibrillators. Social Studies of Science 45(1): 56–76. Google Scholar | SAGE Journals | ISI |
| Oudshoorn, N, Pinch, T (eds) (2003) How Users Matter: The Co-construction of Users and Technologies. Cambridge, MA: MIT Press. Google Scholar | Crossref |
| Parsons, T (1951) The Social System. London: Routledge and Kegan Paul. Google Scholar |
| Pollock, A (2008) The internal cardiac defibrillator. In: Turkle, S (ed.) The Inner History of Devices. Cambridge, MA: MIT Press. Google Scholar |
| Pols, J (2005) Enacting appreciations: Beyond the patient perspective. Health Care Analysis 13(3): 203–221. Google Scholar | Crossref | Medline | ISI |
| Poster, M (1990) The Mode of Information. Chicago, IL: University of Chicago Press. Google Scholar |
| Prainsack, B, Wolinsky, H (2010) Direct-to-consumer genome testing: Opportunities for pharmacogenomics research? Pharmacogenomics 11(5): 651–655. Google Scholar | Crossref | Medline | ISI |
| Ruppert, E (2012) The governmental topologies of database devices. Theory, Culture & Society 29(4/5): 116–136. Google Scholar | SAGE Journals | ISI |
| Simmers, TA (2012) Remote care: Bidding our ICD patients a fond farewell? Netherlands Heart Journal 20: 71–76. Google Scholar | Crossref | Medline | ISI |
| Timmermans, S (1996) Saving lives or saving multiple identities? The double dynamic of resuscitation scripts. Social Studies of Science 26: 767–797. Google Scholar | SAGE Journals | ISI |
| Turner, V (1969) The Ritual Process: Structure and Anti-structure. London: Routledge and Kegan Paul. Google Scholar |
| Turner, V (1977) Variations on a theme of liminality. In: Moore, SF, Myerhoff, BG (eds) Secular Rituals. Assen: Van Gorcum. Google Scholar |
| Wetherell, M (2015) Trends in the turn to affect: A social psychological critique. Body & Society 21(2): 139–166. Google Scholar | SAGE Journals | ISI |
| Zipes, DP. (2006) ACC/AHA/ESC 2006 guidelines for management of patients with ventricular arrhythmias and the prevention of sudden cardiac death – executive summary. European Heart Journal 27(17): 2099–2140. Google Scholar | Medline | ISI |