Paper long abstract:

In the field of metabolism defects often caused by a dysfunctional thyroid gland there seem to be a growing discrepancy between the official and medical science supported normalization practices operated in hospitals and in primary care and the growing skillfulness of patients monitoring their bodily functions and adjusting their medical treatment. These patients are in Denmark typically communicating through web-sites where stories and experiences are exchanged and growing criticism of the available medical treatment products appear. Also the often rather problematic use of normalized, statistical data about metabolism is in hospitals and primary care used to judge treatment schemes and medication without reflecting patients individual dispositions and bodily experiences. This include the grey zones of knowledge about the transformation between different forms of the thyroid hormones. The case study points to a growing field of practice and personal expertise that question the forms of knowledge dominant in medical sciences.

Paper long abstract:

As life increasingly becomes a strategic enterprise, both health and living with a chronic condition seem to be something that has to be individually produced and managed in everyday life. Obviously this sociological diagnosis links to the fact that people make more and more use of technical equipment in order to quantify and monitor their body on a regular basis. Collecting health data as a way of gaining self knowledge is the main concept of "quantified self". Similar practices of constructing bodily realities through numbers also occur in medical contexts. The self-referring everyday activity of a diabetic is generally accompanied by technology-based body monitoring. Illness and health become a task to be performed self-responsibly not only by the "ill" but also by the "healthy" person. This has consequences far beyond the individual level, for example if the "data-body" could display features of employability or collecting self tracking data becomes the scale of incentives.

Many scholars draw on Foucault`s work to explain Quantified Self or personalized medicine as particular mode of mundane gouvernmentality. One weakness of this framework is its focus individual decisions being determined by neoliberal rationalities. Thus, the framework can neither cquestion the ways in which actors involved in measuring are themselves sensitive to political strategies and power asymmetries, nor does it cover the scope for action as perceived by actors themselves. Drawing on ethnographical interviews with actors of Quantified Self movement and people with diabetes disease I would like to question this point.

Paper long abstract:

For diabetes type 1 the development towards stricter regulation of blood-glucose levels is associated with lower risk of long term complications (such as neuropathy, nephropathy, retinopathy, cardiovascular disease). A stricter regulation changes disease management practices of patients and health care professionals. To attain these ideal blood-glucose levels (preferably between 4.4 and 6.6) patients have to measure, log and analyze a few times a day the variability of blood glucose levels in connection with food intake, insulin dosages, stress levels and physical exercise. Technological devices to support patients with doing this work (e.g. blood glucose meter, blood glucose sensor, insulin pump) are increasingly interconnected and connected to online disease management tools. Data is no longer shared exclusively between doctor and patient but also between patient and clinic, medical device companies and other companies offering data sharing services.

Through desk research and interviews with stakeholders this research and presentation has explored what has changed in self-management practices for people with diabetes type 1, in the relationship between patients and other actors, and what issues arise from these changes. With more stakeholders having access to data, goals for data collection and data sharing have expanded from disease management to organizing care, innovation of medical devises, monitoring use and commercial gain through profiling and marketing. This asks for revision of informed consent practices and puts data protection under pressure.

Paper long abstract:

While information-technology based technologies of the self - epitomized in the "quantified self" movement - have recently garnered a lot of attention, measuring techniques have played an important role in health-related practices way before the recent hype. Practices of weight-management are a prime example here. This paper investigates how people in contemporary Austrian society employ different kinds of techniques - novel and old - in order to achieve or sustain desired body shapes and forms of embodiment. Building on neo-materialist and practice approaches, it poses questions of what kind of novel subjective, ethical and physical capacities and what kind of associations between different (non-human and human) actants are enabled trough such techniques, e.g. when people regularly measure their weight, count calories or learn to "listen" to bodily cues in novel ways. I will show how these technologies are implicated in the emergence of novel forms of subjectivity and embodiment, and how they are embedded in wider life strategies that increasingly assume somatic forms. Finally, I will build on my analysis of weight-management practices to reflect on how quantifying and non-quantifying, novel and old technologies of the self articulate with each other within such practices, and I will draw possible implications for our understanding of how new techno-scientific techniques are embedded in wider regimes of the self.

This paper draws on a multi-method ethnography, on narrative interviews and focus group discussions, part of which have been gathered within the research project "Perceptions and Imaginations of Obesity as a Socio-scientific Problem" (PI: Ulrike Felt).

Paper long abstract:

The proposed paper draws on empirical data about clinicians' experiences of Electronic Patient Records (EPRs) from interviews with users in multiple healthcare settings across 8 National Health Service Trusts in England.

EPRs facilitate classification of patients, their conditions and treatments through the use of clinical coding including Read and ICD10 coding schemes. Using Actor-Network Theory I theorise clinical coding as a significant actor in the actor-network for EPRs, and as an inscription of non-clinical agendas associated with ambitions to quantify illness and the work practices which constitute healthcare.

Clinical coding comes into its own in the context of EPRs, serving to legitimise measures of clinical work and classifications of illness, and opening up possibilities for quantifying healthcare on a grand scale. The NHS information strategy aspires not only to improve clinical information flows, but also to use information captured at the point of care to serve a range of secondary purposes including commissioning, clinical audit and administration, particularly in the context of public accountability. There is also an aspiration to commercially exploit datasets extracted from EPRs.

In this respect clinical coding has implications for clinicians in terms of the measurement and increased visibility of work practices and the changing constitution of healthcare with the framing of health and illness in economic and 'audit' terms. Moreover risks to patient privacy from the aggregation of EPR data, its storage, manipulation and transfer raise questions about the ethical consequences for ownership and custodianship of patient records and implications for shifting conceptions of privacy.

Paper long abstract:

There has been a sharp increase in the number of people diagnosed with a chronic disease. A quick search of major medical journals reveals commentaries and articles with titles such as Preventing chronic diseases: how many lives can we save?, The neglected epidemic of chronic disease, and Rising to the global challenge of the chronic disease epidemic (Strong et al 2005) (Horton 2005) (Quam, Smith, & Yach, 2006). Thanks, in part, to enhanced and increased monitoring of care and bodies in healthcare, a global crisis has been created.

'Chronic disease' has become a technical problem with an associated technical, work-driven solution in the form of disease management programs (Arney & Bergen 1984). Designed to improve processes and tailor care to patients, disease management programs coordinate care on multiple levels - at the patient level, the organization level, the community level. Clinical and administrative data is crucial to this.

Through interviews conducted in 19 practice groups in the Netherlands implementing disease management programs, this research and presentation will explore the changes in the work and workers of healthcare, as well as how and what healthcare data is created, how that data is used, who has access and how, who benefits from the work and data created through the work, and who resists. As the data created by and through disease management programs is often used in resource allocation, guideline development, and the establishment of norms, these changes have important biopolitical implications for ministries of health, clinician, patients, and health policy makers.

Paper long abstract:

Of the bodily substances in which STS scholars, anthropologists, sociologists, and medical historians have been interested, saliva has arguably been overlooked. Yet, in the past twenty years, saliva - or more precisely the buccal cells found in saliva - has become a key element in the development of consumer genetic tests. Historically, expectoration has been associated with the spread of disease and social indecency, but when California-based consumer genomics start-up 23andMe began hosting spit parties in 2007, the act of spitting was transformed into an act of self-empowerment through which the individual gained new health information and saliva turned into a new biological source for measuring health and illness. In this paper, we explore how saliva is valued and circulated by taking a closer look at 23andMe's spit parties held at The World Economic Forum in Switzerland and elsewhere, and people demonstrating the use of 23andMe's 'Personal Genome Service' on YouTube. At the same time as spitting is made fashionable and saliva celebrated as the substance through which new self-knowledge will be gained, the actual moment of spitting is often hidden from view. We also examine how saliva is biochemically engineered into a valuable source of DNA, focusing on the company DNA Genotek who sells the saliva collection kits and who aims to establish saliva as the standard source of DNA from an individual. Alongside interest shown in other kinds of 'tissue economies', a greater focus on saliva and its place in the making and remaking of biovalue (Waldby 2000) is warranted.

Paper long abstract:

There is a long tradition of analyzing the female 'anorexic body' in cultural and social space. In particular, feminist theorists Susan Bordo (1993), Elspeth Probyn (1987) and Helen Gremilion (2003) extensively investigate relations between cultural meanings of the anorexic body. However, the male aspect of the anorexic body has so far been overlooked in sociological scholarship. In this paper I propose to analyze the male anorexic body with reference to quantification tools such as SCOFF questionnaire and Eating Attitude Test.

This paper is informed by current research in STS: Bowker and Star's argument on classification systems (Bowker and Star 2000), work on rationalization of medical standardization (Mol 1999, Timmermans and Berg 2003, Berg 1997), and on studies on quality of life measurements (Armstrong and Caldwell 2004).

I will explore the following questions:

How is the anorexic body performed through formal measuring tools such as SCOFF questionnaire and Eating Attitude Test?

How the male anorexic body is produced and differentiated in formal classification systems such as ICD - 10 and DSM V?

Analyzing these medical technologies, I explore the key components which generate the male anorexic body. I argue that medical measurements tools enact the male anorexic body in multiple ways and that male anorexic bodies are made variably in different technologies. I examine the practices of quantification to claim that the male anorexic body is always in the process of being made, despite the apparent and a priori assumed stability and immutability of it by standardized measurement tools, and classification systems.

Paper short abstract:

This paper explores how the portability of mobile health technologies blurs the normative categories of healthcare and lifestyle. Based on this analysis, the concept of "health style" is introduced as an heuristic tool to understand trends in current healthcare policies and systems.

Paper long abstract:

Health apps and wearable sensors connected to smart phones or other mobile portable devices ("mobile health technologies"- mHT) are increasingly envisioned as offering an opportunity to "transform healthcare" by cutting costs, increasing the agency of patients, facilitating the maintenance of unified standards in the clinic and beyond as well as addressing global health issues. These mobile monitoring and measuring devices have raised the interest of markets and policy makers who welcome their introduction in healthcare systems.

mHT however, can't be expected to provide easy solutions to current problems. In particular, the portability of these devices plays an important role in reconfiguring socio-technical medical and lifestyle contexts, relationships and normative categories. The relocation of healthcare outside the traditional spaces and the blurring of established categories, such as 'healthcare' and 'lifestyle' challenge the assumptions that are currently ingrained in our healthcare system and medical practice, including the distinction between patients, health care providers, and carers, and the responsibilities allocated to them.

This contribution engages in a preliminary assessment of the expectations about the revolutionary character of mobile health. To this aim, policy and market discourses around mobile health are mapped and discussed. This mapping exercise focuses on the conceptualization and presentations of categories such as "healthcare" and "lifestyle". Finally, using examples of three types of m-health applications (for professionals, healthy citizens and chronic patients) the heuristic concept of "healthstyle" is introduced. This concept helps to understand some trends in "lifestylization of medicine" that accompanies discourses on m-health.

Paper long abstract:

Not only is the information regarding our personal health and bodily functions increasingly digitized, the network of parties that has interest in and potential access to this personal information is expanding. Paradoxically, this diminishes people's prospect for personal control. Without some form of control the health of the citizen is in the hands of market forces. What kind of control is morally and ethically appropriate or even necessary in our modern participatory democracy? First it is argued, that some collective health literacy is required to enable an informed debate about guaranteeing equal access to care, maintaining the quality of care and keeping the costs within reasonable limits for citizens and patients. Second, it is argued that health literacy is not only a requirement for an informed debate, (individual) health literacy is by itself a necessary condition for the appropriate use of devices that quantify, measure and monitor bodily functions. When data related to bodily functions become combined with DNA and imaging data, medical records and lifestyle data on patients and consumers, the need for collective health literacy becomes even stronger. Without collective health literacy the promises of personalized medicine are a complicit illusion, not a viable future. The problem must not be taken lightly: the general public, health professionals and their patients, as well as journalists and politicians do not adequately understand and internalize health information. This applies to health statistics, but in fact pertains broadly to how many reason about, conceptualize and interpret health information and questions.

Paper long abstract:

The developing field of personalized medicine aims to tailor the medical treatment according to the specific genetic make-up of the individual patient. It strives to act in the present based on predictions of risks to develop pathologies in the future.

Through the analysis of a case-study of a personalized cancer treatment clinical trial, I aim to shed light on configurations of risk in the context of these recent developments in biomedicine, focusing particularly on the dynamics of clinical decision making. In this trial an algorithm was developed to assess the efficacy of drugs for each individual patient. The algorithm processes the products of DNA and RNA sequencing along with additional data on the patient, and produces in turn a quantified prediction score. The oncologists and specialists then convene to decide whether to accept this assessment and determine the treatment path.

I will draw on the analysis of texts, computerized outputs and records, as well as on the analysis of recordings and interviews, to show how the performative capacity of bioinformatic systems manages and produces risk, uncertainty and chance, how these feed into clinical decision making in the trial, and how both these aspects reflect logics of governmental practices. I suggest that risk in personalized medicine can be viewed as an assemblage of governmental practices of power, technological artifacts, biological and genetic matter and information, and various actors. I will discuss the implications of this perspective for conceptualizing risk and biopolitics in new contexts and for recent shifts in medical practices.

Paper long abstract:

Rankings and other performance measurement tools are currently discussed as means to improve transparency in health care leading to better and more efficient performance. Non-compliance with with data collection for performance measurement - such as non-registration or the conscious adaptation of data - is often described as an act of strategic manipulation for the sake of personal or organizational benefit. We argue that such non-compliance is necessary for innovation in health care.

In order to study non-compliance in the case of performance measurement we focus on data collection practices, drawing on data from 6 months of ethnographic work in two Dutch hospitals. We make use of the Gandhian notion of creative dissent, which is increasingly considered amongst STS scholars. Creative dissent, as a method, combines resistance to or non-compliance with a particular (societal) condition, technology or mainstream policy with elements of creative and innovative work. We show that by means of creative forms of non-compliance professionals a) skilfully align dissimilar tasks in an environment of competing demands, b) generate situated and safe working practices, and c) contribute to organizational sensemaking. Creative non-compliance with performance measurement tasks, then, is not necessarily something negative but a resource for organizational development. Creative dissent, we also argue, enables the researcher to study the relevance of non-compliance for innovation.

Paper long abstract:

DSM is the manual used in the medical practice. Psychiatrists use it in order to assess the patients' condition. The manual provides standardized descriptions of mental disorders. The function of DSM is to objectify definitions of disorders and to help physicians in their routine work. The purpose of my presentation is to show how the DSM is a tool for stabilizing a certain way of thinking about mental illness. Basing on the history of creation of manual, I will show how the construction of DSM is similar to creating a laboratory environment in order to solve practical problems in everyday medical diagnostics. Introduction of DSM in the world of medicine resembles implementation of technological innovation. The DSM can be seen as a heterogeneous actor-network which is delegated in the social sphere. I will try to show that this delegation is related to (1) standardization of theory and practice of medical discourse; (2) the creation of specific medical rationality (called by Andrew Lakoff the pharmaceutical reason); (3) biomedicalization process (which is associated with expanding the medical discourse and with commercialization of medical services). I will argue that medical diagnostics is a result of a number of interconnected heterogeneous factors and practices of stabilizing them. I will use the STS concept of laboratory and John Law's theory of long distance control.

Paper long abstract:

The quantification of bodily functions and lifestyle variables into risk factors has given rise to a range of new objects and in the digital age. For instance, risk scores - algorithms that predict risks figures based on epidemiological studies - have become key elements of "evidence-based prevention". This paper sets out to examine the temporalities that are folded into the socio-technical ensemble of such tools: Each time risk scores are calculated and used, the computation mobilizes the collective disease experience recorded for a population into a prognosis at the individual level. What kind of convoluted temporalities are at work in risk scores? How do they perform, as risk scores circulate through society? Drawing on empirical material from large-scale epidemiological studies, I examine how these particular data foldings (Serres 2005) relate body and time in specific ways. This approach is inspired by various strands in STS, database multiples (Mol 2001), memory practices (Bowker 2009), calculative devices (Callon 1998) as well as modes of anticipation (Adams et al. 2012). By focusing on the specifics of digital practices and the performativity of algorithms (Mackenzie 2005), I trace how principles of accounting co-shape health matters. Focusing on practices with quantitative data, this paper will offer an itinerary through datascapes, from epidemiological data collecting and biobanking, data aggregation and modeling, to the social life of risk figures. In this way this paper contributes to rethinking conceptually how we approach and study infrastructures of quantification in the health sciences.

Paper long abstract:

The estimation of health risks is central to preventive medicine and health policies. On the basis of epidemiological studies risk factors and high risk populations are identified, models of risk calculation are developed and risk assessment tools are tested. In this production of risk knowledge (as well as in its application) individual and population are entangled in specific ways: On the one hand (bio-)information of individuals is stored in databanks and is made usable in epidemiological research in order to develop statistical models; on the other hand this population-based risk knowledge is individualized in quantified estimates of future disease risks (Holmberg et al. 2012, Holmberg/Parascandola 2010). As interfaces between research and society such individualized risk calculations present an interesting case for the discussion of the quantification of health and illness. In which situations are risk estimates used by whom? How are they transformed and negotiated in these different contexts and usages? And what are the social and political consequences of such quantified practices of measuring health? In order to discuss these questions the paper presents results of an enquiry in preparation of an ethnographic investigation of epidemiological risk scores. Taking one (to two) risk score(s) as an example the 'social life' and circulation of quantified/individualized risk knowledge will be mapped and analyzed.