Paper long abstract:

Healthcare systems are increasingly challenged to provide high-quality services to more people using less personnel and resources. To meet this challenge governance structures and strategies need to be adapted in order to reorganize care. Policy and practice are increasingly turning to ICT solutions that promise cutting costs and enabling patient-centered care through better information exchange, as well as making individuals more capable of self-care and less reliant on health systems (Harris et al 2010; Oudshoorn 2011; Lupton 2013a). Within a Dutch research programme automated computer supported coaching systems (eCoaching) is prompted as such an ICT solution and offers an intriguing example of lifestyle technology for self-management.

However, researchers must be wary of the 'big claims' that accompany self-management by eCoaching. Powerful rhetoric often overshadows the practicalities of daily use and tends to underestimate, or even ignore, a number of theoretical, normative and ethical caveats associated with redefinition of roles and reliance on technology. For example, these technologies become integrated in everyday life, blurring the border between wellness and disease, medicalizing private/personal spaces and enabling new practices of surveilling and steering individual behavior.

We will examine these issues by drawing on the first results of a study on the normativities of eCoaching for lifestyle change. We contribute to the theme of this track with an examination of the discourses of responsibility, participation, lifestyle improvement and self-care found in the general program funding call for eCoaching projects, individual project proposals and the eCoaching applications.

Paper long abstract:

Distributed health-care services involve a network of technology, technicians, health care professionals and patients together with economical and institutional frames. Through the mobilization of the notion of "script" I will focus on how the actors involved are delegated certain roles. My interest will be on how roles, tasks and practices among human actors shift.

I draw on empiric data from a pilot project where patients with spinal cord injury (SCI) and bedsores are offered weekly specialist consultations in their home in collaboration with the district nurses. Computer based videoconferences are used.

The consultations are initiated and operated from the specialist health service in order to follow up "their" patients at home. In doing so the specialists take over the responsibility for the treatment of the bedsores. As a consequence the district nurses' role change from being delegated the evaluation and change of procedures related to the bedsore, to the role as partners in a mutual online discussion. The district nurses keep the "hands-on" tasks like palpating the skin, but the specialists make the decisions.

The patients' are moved from a hospital setting into their own home. Avoiding pressure on the bedsore area is one key element of healing bedsores among patients with SCI. Bringing the web camera and real time connection into the home give the specialists opportunity to evaluate the bedsore, but also to regularly control the patients' ability to follow the recommendations, and also to follownhow the district nurses manage the bedsore treatment.

Paper long abstract:

During the past decade and also today, telecare is a hot welfare-political issue in Norway, as in many other countries worldwide. Telecare technologies come with a range of promises of more labour- and costefficient health and care services, and is in this way seen to meet the challenges of the ageing of society. In Norway a State financed plan for large scale telecare implementation is currently in progress. According to this plan ¾ of all Norwegian municipalities will have implemented telecare technologies in elderly care by 2020.

GPS tracking devices in dementia care is one of the telecare solutions to be implemented. The use of telecare technologies is expected to make it possble for the elderly, including persons suffering from dementia, to be able to live at home for longer, as the added technology will provide the necessary safety and security. In this the telecare implementation will lead to a 'win-win' situation, according to the proposed plan, as living at home will enable a more active lifestyle in accordance with own needs.

However, empirical studies of GPS-tracking practices in dementia care show that the 'window of opportuntity' for persons suffering from dementia to make use of GPS tracking varies considerably. In some instances, the GPS is only useful for some weeks. This raises a number of questions and issues related to the current telecare hype and the unrealistic expectations related to the benefits of telecare implementation.

In this paper I will address explore different factors influencing this 'window of opportunity.'

Paper long abstract:

This paper investigates how conceptions of the 'participatory society' may be applied to enactments of 'the person' in the field of dementia. In Western philosophy personhood has often been associated with cognitive abilities such as memory, consciousness and the task of self-making, reflecting a notion of 'person' as an essence and something beings can possess and loose. Consequently the fact of the 'person' may be questioned in the case of dementias. In this paper, we take an alternative position subscribing to the premise that personhood is not a stable and fixed phenomenon but something that is practiced in social arenas. We thus aim to investigate how the person is enacted and allowed to act in the clinical encounter in a memory clinic in Copenhagen, Denmark. Based on ethnographic fieldwork in the memory clinic we look at the complex diagnostic and treatment practices in which relatives are continuously drawn in and required to participate. The clinical conversation is centered around the medical history of the patient, but as most patients in the memory clinic are incapable of creating a meaningful disease narrative on their own, this narrative is formed through the shared collective experience of both patient and relatives. Hence this practice enacts the person as socially constituted through kinship, partnership or friendship. The movement towards a 'participatory society' is said to rearticulate expertise, values and responsibilities. With this paper we wish to extend this debate and discuss how technologies of participation allow specific enactments of what constitutes a person.

Paper long abstract:

Health care in Britain has been seen to be failing. Several recent reviews of care of patients describe unnecessary suffering in clinical settings. (Francis, 2013; Berwick, 2013; Keogh, 2013) One widely used explanation for the documented poor care is that there has been a loss of values causing lack of 'compassion in healthcare'. (Hunt, 2013; de Zulueta, 2013) In response a new set of Common Values have been written into the National Health Service Constitution. However, while the pursuit of Common Values holds the promise of better care, can Common Values be done in clinical locations where care enacts and reflects negotiations and interferences between multiple, potentially conflicting, situated practices of valuing? I will draw on observations and interviews from an ethnographic study of the care of patients with Alcoholic Liver Disease to offer a preliminary exploration of how one of these Values might relate to situated caring. Specifically, the paper explores the shifts in distribution of expertise, values and responsibilities performed through the pursuit of the Common Value 'Respect and Dignity'. 'Respect and Dignity' values patients as individuals with aspirations, commitments, needs and desires and at the same time promises to shift responsibility for care from the State to the individual patient and his/her practitioner. Values (and compassionate care) are performed as individual expressions rather than effects of relations between heterogeneous actors. The result may be denial of a collective responsibility to alleviate suffering and reduced capacities for care.

Paper long abstract:

Developers of clinical practice guidelines face the challenge of how to include dimensions of care that are not easily articulated in evidence-based terms. Although evidence-based guideline development does not exclude any clinical issues or types of knowledge per se, guideline development groups face substantial challenges when attempting to integrate different knowledges. This makes guideline development an interesting site to study how judgment and calculation are brought together by what Callon and Law have called 'rendering issues qualculable'. To do so, we study the development of two guidelines on suicidality and contrast their development practices and resulting textual arrangements. Developers face the tricky tension between articulating the importance of 'making contact' with suicidal people, and the pressure to use risk assessment instruments. Such risk assessment tools directly problematize making contact, but are hard to exclude in the light of available evidence. Developers of the two guidelines either try to qualculate contact within the spatiotemporal frame of evidence-based guideline development, or try to articulate this issue in ways that are more suiting to the issue of making contact, but require another spatiotemporal frame. 'Knowledge integration' in guideline development therefore requires not just a focus on practices of qualculation; it equally requires reflection on the affordances of spatiotemporal frames, as historically grown environments, for articulating the issues at hand. This is relevant for ongoing discussions within Science and Technology Studies in relation to the question of how to articulate issues, render them accountable and still foster diversity by affording discontinuity when doing standards.

Paper long abstract:

From mid-2000 the 'Patient 2.0'- term was proposed as a new strategy, where technologically empowered patients engage with technology. "Future patients take care of themselves" was a headline in a newspaper, and self-management and telecare technologies were means to change the practices of elderly patients. A transformation of the traditional healthcare system was on the agenda that challenged the traditional view on the role of patients (in the paper framed as 'Patient 1.0'.) Based on empirical field studies, interviews and written material, we argue, that this change in the socio-material assemblies may cause implications going beyond the immediate gains, politicians see by reducing hospitalization time, investment in new technology and transforming patients and relatives into experts. Mort et al. (2003) have suggested the terms 'remote doctors' and 'absent patients' and Oudshoorn (2008) says that the absence of face-to-face contacts implies that the healthcare professionals rely more on representations as for example graphs that often are carried out by the patients themselves.

Though ethnographic research in the Danish healthcare sector this paper shows how the vision and strategies actually are taken form when introduced to elderly heart and diabetes patients. The paper shows how new actors, i.e. technologies, pamphlets and training instructions changes the relationship in the established networks and a new 'chronic'/'cured' discussion challenges the establish patient/doctor relations. Theoretically we draw on analysis of discipline (Foucault, 1975), Actors/non-human actors (Latour, 1999) socio-material assemblies (Ehn, 2011) and domestication (Silverstone, 1989).

Paper long abstract:

Originally built around the cure and treatment of episodic cases, healthcare sector is being reshaped by the need to deal with populations which are increasingly older and affected by chronic conditions. Health management is now redistributed in dispersed networks that cross the boundaries of health institution and extend to the private spaces of the home and the work environment. The traditional health professional's predominance is giving way to new form of shared and empowered patienthood, as the 'so-called' Patient 2.0. This shift from within institutional boundaries to the outside calls ethnographers to explore the mundane arrangements of people engaging with health conditions. It calls ethnographers to the wild.

In this paper we shall present three different explorations of health management outside institutional boundaries, in the endeavour to account for the complexities of care networks. The first case, the clinic in the wild, takes into exam the issue of health education in a diabetes summer camp emphasizing the formation of a shared awareness of diabetes among young patients and volunteers. The second, medication management at home, shows the distribution of expertise and work among physicians, older patients and caregivers, focusing on their conflicts and adoption dynamics. The third, following traces of articulation work, brings to the fore the invisible activities of personal health information management and the silent voices of material arrangements. Building on the cases, we shall conclude our work discussing the methodological challenges and implications of exploring health management out there in the wild, crossing the comfortable institutional boundaries.

Paper long abstract:

Solidarity, responsibility and participation are key words of the Dutch reform of a welfare state into a 'participatory society'. This reform entails that the meaning of citizenship has changed from entitlements towards obligations and responsibilities. Old age has been connected to the notion of entitlements for decades, articulating the idea that people of old age have 'earned' their pension and healthcare. However, while elderly people consider themselves entitled, authorities define them as dependent healthcare consumers. Professionals like nurses, social workers, elderly advisors and municipal workers have to connect the different meanings of citizenship and the expectations about care that accompany these meanings. Professionals collaborate in multidisciplinary social care teams to mediate the different perspectives of authorities and elderly people. They use soft technologies like kitchen-table conversations, case-management, and shared registration systems to perform their mediating role.

In this study we followed a collaborative project in the Southern part of the Netherlands that aims to develop lifecycle robust neighborhoods. Elderly people are approached as 'full' citizens, in an attempt to face the challenges of an aging population and expanding healthcare expenditures. To understand the construction of elderly citizenship, we interviewed elderly people, welfare-, healthcare- and housing professionals, policy-makers, civil servants, directors and aldermen (n=72). Besides this, we observed project-meetings, performed focus groups and analyzed documents. Based on the empirical data collected, we will demonstrate how soft technologies help to mediate the meaning of citizenship, participation and aging. Meanwhile professional boundaries shift, new responsibilities to construct responsible elderly citizens demand new expertise.

Paper long abstract:

The pluralizing of policing expands caring by non-experts and/or semi-experts. It can be found in everyday local issues, especially in everyday security such as volunteer for crime prevention by local community (just watching). Since its easiness to participate that responsibility-free caring circle, it creates virtuous cycle to extend loose caring governance in community. However, once people starts thinking about responsibility to take care of others, especially children or elderly in community, "care" issues suddenly turns into a personal "risk" issue. These recent of trend of featuring mundane care to hazardous risk, enabled prosper of security industry and technologies. In Japan, since around 2005, many surveillance tools were developed by industries, for example, knowing the children's location by using RFID tags or mobile phones. However it just offers "peace of mind" for parents' and did not actually prevent child being caught by an accident or crime. Moreover, the problem is that this trend emphasized more risk perception on child security and the logic of care is to be confined only to personal risk issues. This study attempts to bridge researches on everyday care and risk perception by referring to the key concepts such as experts, participation, responsibility and governance, which are central STS topics.

Paper long abstract:

Groups characterized by low socioeconomic status (LSES) belong to the hard-to-reach groups defined by the WHO in its report about the 'mental health gap' (2008). This paper presents a project taking a new approach to 'reach'. Classic 'diffusion' approaches to reach, are based on a narrow notion of valid knowledge that should reach LSES groups via evidence based interventions. However, the lack of reach of evidence based intervention can be seen as a limit to the validity in both scientific and normative sense. Mental health promotion deals with sensitive social and normative issues and is therefore not socially modular: what works in experimental social settings may not work in street-interactions in LSES neighborhoods.

The health promotion project that we present, does not take the validity of evidence in the social contexts of LSES groups for granted. 'Bianca in the neighborhood', is a community based mixed media project designed to promote mental health and resilience in LSES neighborhoods in the city of Maastricht. Six short films, about social, financial and emotional difficulties, common in the participating neighborhoods, form the central constituents of the media project. Around these films media- and social interactions were organized. We analyze the types of stories and expertise that were included and excluded during 'the making of Bianca'. In addition we analyze the neighborhood deliberations, generated by Bianca about redistributing responsibilities for mental health and social resilience. The analysis is based on an ethnographic study of the project and its embedding.

Paper long abstract:

In this paper we explore the value of life as an empirical and practical problem (work) that appears when clinicians, parents, technologies and regulations set up boundaries between life and death, viable and not-viable. Based on ethnographic fieldwork in everyday clinical life in a Danish NICU we investigate the way parents as well as professionals adhere to a strong ideal of reaching consensus and practicing solidarity at the same time as they may sometimes reach very different stances on when and why to continue or withdraw life-sustaining treatment from infants at the margins of life. These processes demonstrate negotiations of responsibility, expertise, values, and welfare state priorities that are often articulated as concerns of timing: the right clinical time to decide ("the therapeutic window"), the time parents need to reach the decision ("get the parents on board"), and the need to let live or let die in worthy ways ("hurry up slowly"). Drawing upon studies that see time as constituted by the human ability to act in situations of existential loss and crisis, we suggest that the work of aligning the different temporalities at stake in life-and-death decisions, assists the participants in finding a comprehensible and 'common moral path' in the NICU, in finding a path of solidarity. We argue that the choreography of aligning temporalities in such existentially difficult decision-making situations becomes a scene to observe the strong ideals and practices of participation in the Danish welfare state, and with these the implications of an emerging participatory society.

Paper long abstract:

During the last ten years Finnish healthcare system - like in many other welfare states - has been under growing pressure to increase efficiency and cut costs. One of the leading ideas to tackle this problem has been to concentrate on preventive care and new technological solutions to help citizens take charge of their personal health. This has become evident especially in the strategic discussions related to genomics and utilization of genetic risk information. Some pilot projects and R&D efforts related to genomics and use of genetic risk information have been launched, and among the biomedical experts there is much discussion about how, for what purposes and in what format genetic risk information should be mediated to patients, doctors or healthy citizens. One of the key elements seems to be how to make genomic or genetic risk information understandable, utilizable and helpful for the possible users of the information.

This paper is based on an ongoing project were the mediation and moulding of genetic risk information is examined from multiple standpoints: 1) Citizen and patient perspectives on receiving genetic risk information and using related health applications. 2) Doctors' and health care workers' conceptions about using risk information as part of health care. 3) Policy-making and expert discussions on the future of healthcare, genome strategy and biobank practices. The paper presents the conceptual framework used in the project as well as some preliminary empirical results.

Paper long abstract:

In today's chronic disease management, numbers play a vital role in the mobilisation of the chronicly ill patient as a self-monitoring, active and responsible citizen. In response, it has been argued that patients need to have better numeracy skills (Perzynski et al. 2013) and a "numeracy gap" between health care providers and patients have been identified (Pighin et al. 2011). As such, the concern has been with how to communicate and present numbers to patients, in order for them to become able to understand numbers correctly. While such studies are important in their own right, this paper argues that it is necessary also to give attention to the spatial and temporal effects of numbers, if we are to understand the implications of the increasing use of numbers in chronic disease management. On the basis of ethnographic material, I explore how numbers (indicating bloodsugar) are interpreted in diabetes self-management education and the process through which numbers become meaningful in participant's everyday life. I propose an understanding of numbers as an element of the chronic care infrastructure (Langstrup 2013) that interrelate the home and the clinic, and illustrate that numbers become meaningful only through the attachment to other elements in the infrastructure, such as standards, medication, everyday practices and social relations. I argue that numbers have both place-making effects (the sense of place), which demands the emplacements of various objects, relations and activities in participants everyday life, and temporal effects (the sense of time), that creates a reorganisation of participants sense of the past and the future.

Paper long abstract:

In a pink trailer with the phrase "I love me" written on it, girls can get vaccinated against HPV in Sweden. By downloading an app, they can learn about HPV vaccination by doing a quiz. On Facebook they can ventilate HPV vaccine concerns at a campaign site. In my ongoing PhD project I use feminist STS studies to discuss how these different technological objects and girl subjects are a part of how county councils enact HPV vaccination. I am doing so by analyzing interview conversations with county council staff as well as health promotion campaign material, which includes textual, visual and technological components.

By discussing HPV vaccination as a "matter of care" (Puig de la Bellacasa 2011) I show how county councils care for certain girl subjectivities and technologies. In this context, care as a doing enacts relations between girls and technologies such as the trailer, the app, Facebook and HPV vaccines, in what I discuss as an "intimate way". My presentation zooms in on two different HPV vaccination health promotion campaigns aiming at activating and empowering girls. This approach enables me to discuss how risk management, contagion control, empowerment, responsibility and bodies are made through intimate care work. In doing so, I discuss how HPV vaccination is balanced, managed and enacted by the county councils as a "care for the self" and a "care for the herd" (cf. Singleton 2012) - and what the consequences of these versions of HPV vaccination may be.

Paper long abstract:

In the UK, the promotion of 'active' citizenship (with its concomitant responsibilisation of specific citizens) has sometimes been underpinned by concepts and findings 'translated' from neuroscientific research. For example, parents are urged to create a good 'home environment' so that the still plastic brains of their offspring can develop in the best ways possible, and older adults are encouraged to stay physically and mentally fit as 'what is good for your heart is good for your brain'. Especially in the former context, the ultimate optimisation of the social and economic contribution of (proto)citizens is framed as having neurobiological prerequisites. In this paper, we focus on UK health policies regarding older adults, adolescence, and (in particular) the early years, investigating if and how these policies draw on the neurosciences. We ask: what kinds of citizens are performed through such documentation, and what (self-)care practices are enabled and disabled? We conceive of responsibility as a discourse that ebbs and flows, rather than as a stable kind that moves linearly and uniformly from (for example) state to citizenry; hence, we consider the different kinds of 'responsibility' that are evident across policy domains. Our aim is to understand what the productive effects are of the political enrolment of neuroscience, whilst nevertheless remaining sensitive to the normative implications that emerge from its embedding within policies and services. In this respect, we are concerned with the ways in which (biosocial) communities and forms of solidarity are un/made in order to render policy operable.

Paper long abstract:

Patient participation has become a keyword in healthcare, penetrating the interrelated arenas of treatment, research and innovation, policy-making, and market, which make up modern healthcare, and unifying various paradigms within. Yet, despite its dispersed constituent contexts and roots, patient participation remains a rather closed figure with a conceptual vagueness, rendering it, at times, an all-too flexible political trope or simply an empty platitude. We seek to open up and qualify this troubling figure by inquiring into the ways in which patients enact participation and singling these out as distinct operational modes or 'tactics'. Based on ethnographic engagement in a user test of an e-health system for heart patients, we show how patients shaped their engagement across different arenas along four lines of tactics: 'representation', 'collaboration', 'emergency', and 'compliance'. Our argument is twofold. First, we suggest that inherent to any invitation to participate is the paradox that although certain ideas of participation may be inscribed, e.g. in e-health or other 'participatory technologies', the enactment of participation cannot be foreseen since to participate is to 'tinker', that is, to creatively make do of the situation and technologies at hand. Secondly, as illustrated by the empirical case, this tinkering plays out along distinct, yet interwoven, lines of tactics, which bring about certain expectations. We propose that recognition of the potential multitude of participatory tactics (and their respective implications) underscores the need for and may inform more precise invitations to patient participation that better allow for alignment of expectations - and resistance.