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‘This really takes it out of you!’ The senses and emotions in digital health practices of the elderly

‘This really takes it out of you!’ The senses and emotions in digital health practices of the... Wearables, fitness apps and home-based monitoring technology designed to help manage chronic diseases are generally considered in terms of their effectiveness in saving costs and improving the health care system. This article looks, instead, at the digital health practices of persons older than 65 years; it considers their actual health practices, their senses and emotions. In a qualitative study 27 elderly persons were interviewed about their digital health practices and accompanied while using the devices. The findings show that digital technologies and ageing bodies are co-productive in performing specific modes of health and the ageing process. The study shows that digital technologies not only encourage the elderly to remain physically active and enable them to age in place, but also that the use of these technologies causes the elderly to develop negative emotions that stand in a charged relationship to ageing stereotypes. Thereby, the sense of seeing has been place in pole position, while the faculty for introspection declines. This means that age-related impaired vision can result in particularly severe consequences. In the discussion it is debated in which concrete ways that digital health technologies have had a negative impact. The sociotechnical practices associated with wearables conform to the primacy of preventing ageing; passive and active monitoring technologies appear as subsystems of risk estimation, which in turn regulates diverse practices. The conclusion highlights the interrelation between notions of successful ageing and the digital practices of the elderly. Keywords Digital health technologies, health information technologies, health monitoring, doing age, doing health, senses, emotions, gerontechnology, sociotechnical interactions Submission date: 6 October 2016; Acceptance date: 20 February 2017 Introduction provided with information and opportunities for look- Whenever governmental strategies or legal amendments ing after themselves and taking responsibility for their on e-health are published in Europe, they refer to own health and care. In this process, digital innovations demographic change and thus to a future unbearable become drivers for empowering members of the health burden on health care systems. Government strategists care system. By assuming responsibility for the use of and lawmakers argue that an increase in the number of digital technologies, elderly users could improve their older people and thus in the number of chronically ill own quality of care and act preventively, thus making it and persons requiring care threatens to wear down possible for them to lead autonomous, independent and health care systems. Only an up-to-date digital restruc- self-determined lifestyles in the long run. This ultim- turing of the administrative structure as well as of care ately could or should result in a reduction of their and prevention would be capable of forestalling a col- lapse. For that reason, the (future) user of digital health University of Bremen, Germany technologies should be placed at the heart of a general Corresponding author: digital health infrastructure. Placing people at the Monika Urban, Institute for Public Health and Nursing, University of centre means that their health can be more effectively Bremen, Grazer Str. 2, 28359 Bremen, Germany. and adaptively managed and that they can be better Email: murban@uni-bremen.de Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-Non- Commercial 3.0 License (http://www.creativecommons.org/licenses/by-nc/3.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https:// us.sagepub.com/en-us/nam/open-access-at-sage). 2 DIGITAL HEALTH impact on the health care system as a whole. Such simplification. It needs to be considered that those eld- wording can, for example, be found in the Strategie erly using digital technologies are mostly middle and nationale de sante 2020, published in summer 2016, upper class and in their third stage of life; see e.g. as well as in the German eHealth Act implemented in Urban. ) Here I focus on digital practices that can December 2015. be performed independently, that are largely self- This apparent winwin situation, it is believed, financed and that are undertaken to preserve or would also benefit the elderly, who are generally seen regain health, physical fitness and thus independence to represent the epitome of strain on the current health for the elderly in their own homes. To that end, two care system. Current developments and innovations in application contexts of digital health technologies for health information technology (HIT) permit a number the elderly will be examined in greater detail: (a) wear- of public health interventions to address different ables and health apps in the context of fitness activities; groups of the elderly as empowered subjects motivated and (b) digital health practices connected to home- to prolong their physical fitness and optimise their monitoring for the diagnosis and management of 36 health with the aid of digital technologies. In add- long-term chronic conditions. In the subsequent discus- ition, the market segment that provides digital health sion I focus on how the digital technologies enable the technologies designed to compensate physical or mental elderly and how they also put new obligations on the impairment is growing. Products include various users. Finally, I attempt to answer the questions raised sensors, wearables and apps, such as emergency call at the outset and I conclude by summarizing the rele- wristbands, blood glucose meters, pedometers, ambient vance of senses and emotions for doing digital ageing. assistive living technologies and nursing robots. Digital health technologies promise (future) elderly persons Theoretical background, case study and health in a supportive and positive setting, thus preser- ving their independence. These technologies will create methods new opportunities for successful ageing, i.e. self- Theoretical background determined, healthy, autonomous and self-responsible ageing. Because of such possibilities, ageing without the To understand how digital technologies co-constitute aid of digital technologies seems to be far less desirable; health practices of the elderly let us first turn to the at the same time, new challenges arise for the elderly. setting of the digital health technologies. The technol- This ambivalence generated by empowerment in ogies are praised and put into practice under the head- conjunction with the challenges of technology-based ing of ‘successful ageing’, the purpose of which is to successful ageing is analysed in the following from a promote health, fitness and independence of the elderly. sociocultural gerontechnology standpoint, for example The idea of successful ageing involves a deficit model of see Joyce and Meika. In this spirit, we will be less ageing that focuses on failing physical fitness and, by concerned with what is technically feasible than with implication, a societal burden, on health impairment the practices of self-monitoring and their physical, sen- with a greater prevalence of chronic ailments and on sory and emotional impacts on the user. This focus will changing psychological structures such as mistrust and be developed on the basis of three questions: (1) How lack of flexibility. In both of these concepts, age do digital health technologies co-constitute health prac- denotes a marker of difference that represents a later tices of the elderly? (2) What sensory perceptions and phase in life, which, in Western industrial nations, from emotions of the user in response to digital health tech- the late 20th century onwards, begins with retirement. nologies can we identify? (3) What role do the senses of Age in this view is a contingent  i.e. changeable the elderly play in the interaction with digital health social phenomenon that depends on historical, technologies? socialcultural, political and economic parameters. In I begin with a brief overview of the theoretical back- the words of the Austrian gerontosociologist Leopold ground and methods. The theoretical concepts of Rosenmayr, age is a ‘social construct’. With this per- ‘doing age’ and ‘doing health’ have been chosen for spective, age is seen to be determined by public health the analysis of digital practices of elderly people. care, the developmental stage of the capitalist system, Therefore, I discuss these concepts initially and then and the organisational structure of retirement security expand them with science and technology studies and of the labour market in general. (STS). Following that, I give a brief survey of sensory In parallel to these sociocultural ascriptions to old studies. This subsection is followed by methodological age, ageing describes a highly individual process of explications, including a subsequent presentation of changes to the organism that are experienced physic- findings from a pilot study on the digital practices of ally, such as changes to skin and tissue tautness as well elderly persons. (The ‘elderly’ is a diverse group; see e.g. as to mental and physiological capacities. It puts into Lindsay et al. . The term is used here as a pragmatic effect its own processes, from a reduction in bone Urban 3 density to erectile problems. In view of these two dif- is concerned mostly with human social practices and ferent perspectives, the sociologist Silke van Dyk understands matter  whether in our case ageing refers to the ‘dual character of ageing’, whereby hege- bodies or digital technologies  ultimately as a passive monic modes of action and processing together with product of discursive practices, our position in the ‘specific interpretive concepts’ of age(ing) are interwo- following is to interpret the material and immaterial, ven with the physical experiences of ageing. The the technological and discursive elements, as co- eminent individual experience can only be lived against constituent. With reference to Karen Barad, that the backdrop of institutional processing regulations which is material will be seen as integral parts of an and interpreted with the aid of cultural representations. entire interactive development process: thus, not only For that reason, social invocations and standardisa- ageing bodies, but also digital technologies become co- tions both enable and limit the experiences and prac- producers of a continuous process of materialisation of tices of ageing. The body is thus at the same time ageing. medium and instrument, product and producer, of In the terminology of science and technology studies everyday experiences and life in old age. (STS), doing age is part of an interrelationship network These ideas provide a basis for the ‘doing age’ of society and technologies. This performativity is 1820 29 approach. In parallel to the classic definition of reflected in the concept of sociotechnical interaction. ‘doing gender’ by Candace West and Don Sociotechnical interactions incorporate values that are 21 30 Zimmerman, doing age can thus be defined as gener- generated and stabilised by society. Users with their ating age differences (limits, groups, phases) that are expectations and practices as well as digital technolo- not natural or biological, but that, once constructed, gies with their algorithms and design are caught in the are treated as if they were natural entities. field of tension between the contexts of their social 30,31 Accordingly, people age performatively through social genesis and actions. Users and their practices are interaction. If we apply Hirschauer’s concept of ‘situ- not predetermined, and the use of technical devices is ational gender construction’ to age, this means that age not restricted to only one manner of application. is performed, updated, continued and maintained However scripts exist for the human subjects as well through significant social interactions. Ageing is thus as for the technical devices: they function like a pro- a social practice, and social structures are reproduced gramme of action to justify objectives, practices and and shaped through situational actions. It is a continu- corresponding ideas, for example notions of ageing or ous process of interactive production of material  e.g. health. These scripts can be modified, i.e. adapted to physically fit bodies  and non-material aspects, such as habits, requirements or abilities. In this way, the tech- the ideal of successful ageing and emotions like pride in nical becomes interlocked with the corporeal and one’s own independence. Doing age thus brings experiences undergo (re-)coding. To answer the ques- together performance  the actual physical practices tion as to how digital health technologies generate and presentation  the use of specific codes, for (health) practices, the materiality of the body is inter- example, health practices or ageing-in-place. preted as a process. Therefore the scripts  both of This ‘embodying of ageing’ is characterised by the technical involvement and corporeal practices  will view that signs of ageing are deviations from the ideal  be of great interest in the following analysis. the youthful and powerful body. Thus the embodying The second and third research questions direct our of ageing takes the form of a battle against ageing. This attention towards sensory experiences and emotions in was already stated by Hepworth and Featherstone in response to digital health technologies. This is of par- 1982. In this struggle, health plays a key role. Health ticular significance because digital technologies are said can also be understood in terms of ‘doing health’. This to threaten a disembodiment of practices: somatic concept, too, starts from the notion that active subjects experiences would be reduced to mere data flows and in real settings model their bodies in accordance with devices. Bodies would thereby simply become codified social relationships and specific knowledge. Thereby and rendered digital (compare with Tucker and they naturalise the effects of the practices and health Goodings ). In contrast, in this article the body is itself gets constituted. So in this sense, doing health thought of as genuinely engaged with the material becomes an analytical strategy that views a life-world technological reality. Therefore I will recognise the phenomenon such as health as extant only when it is body as an affective element of experience in a broader being implemented. assemblage. Its senses and sentiments are understood With reference to Judith Butler’s notion of per- as meaning or sense making. Sensing is (as much as are formative materialisation, doing age and doing material and immaterial aspects) integrated into an health in this sense refer to a linguistic and a visual interactive process of development; and, at the same designation, and to a physical action as a perpetually time, it mediates the relationship between society and repeating and self-referencing practice. While Butler self, body and mind, knowledge and materiality. 4 DIGITAL HEALTH The senses therefore reach out as sources of informa- fitness activities; and (b) within the context of home- tion as well as provide us with a way to make sense of based care for chronic illness. Even though praxeology our environment and our inner world. Whereas the is generally sceptical towards the interview as a survey senses of sight, hearing, taste, smell and touch are method, in this case interviews are well-suited to the modes to provide knowledge about our external envir- analysis because they aim to uncover emplaced know- onment, other senses such as the sense of pain, the sense ledge. Through interviews we might gain insight into of our own muscles and organs, our senses of balance, how the research participants represent and categorise movement, temperature, time, etc. give us access to the their lived and situated practices, sensory experiences, 39 40 internal world (compare with Hunter and Emerald ). emotions and values. (Kathryn Geurts pointed out that Nevertheless, sensory experiences are intermingled with senses and sensations even depend on language  not one another as well as with emotions, meanings and just to articulate them in one’s own social context, but 41 48 memories. Among the multiplicity of senses, vision to even make sense of their operation. ) Interviews are or eyesight is considered to be the most important in therefore understood as context-dependent representa- Western societies, where the progress of science, tech- tions of experiences. (The interview is ‘where multisen- 42,43 nology and object-centred thinking matters most. sorial experience is verbalized through culturally Like the concept of doing age, sensory and emo- constructed sensory categories and in the context of tional practices are identified as being specific to the intersubjective interaction between ethnographer social situations. They are neither simply constructed and research participant’. ) nor inscribed in the human body; rather, the senses are The study participants included males and females, developed, educated and shaped in the bodily engage- mostly middle class, and in their third phase of life, ments with the world. This creates a structure to the generally in their late sixties and seventies. The oldest world that both enhances and constrains sensory and interviewee was an 84-year-old woman. Most interview 44,45 emotional experiences. Senses and emotions there- partners were of German descent; a few had back- fore are situated and processual: sensing is a social grounds of a different nationality. The health condi- practice; social structures and culture as well as tions specified by the interviewees varied between gender- and class-specific concepts are reproduced; being mentally and physically fit to suffering from at the same time, sensing is shaped. In other words, chronic medical conditions. The interviewees were ‘sensory experience is socially made and mediated’. recruited from bulletin board postings in centres for Sensory studies point out that bodily conditions like senior citizens and senior citizens’ sport associations, health and illness can be sensed (nociception).This sen- medical practices, supermarkets, other contact points sing relates to specific forms of knowledge that allow us and through advertising in a local newspaper. Some to translate sensations into a judgement (diagnoses) interviewees were won through a snowball effect. The about a state of being. This judgement is, again, inter- selection criteria we used were the level of interest in twined in sensing one’s own body, through practices as participation and usage of specific digital technologies. well as through devices with which he or she chooses to The survey consisted of semi-structured narrative use (compare with Pols ). Subsequently, digital tech- interviews, lasting between 45 and 95 minutes. The nologies influence the practices and therefore create elderly interviewees were asked about self-monitoring new sensory experiences. Sensations and senses are practices, physical and emotional impacts as well as highly socially significant; therefore they will be exam- sensory experiences. The interviews were transcribed ined in some detail in this analysis. The focus here is on by student assistants using f4 transcription software, practices, sensations and emotions, and on the new and analysed by the author using MAX QDA qualita- forms of knowledge and subsequent moral judgements tive data analysis software (details of the software pub- that they may generate. Further, the analysis is con- lisher can be found at: https://www.audiotranskription. cerned in particular with the aspects that they stabilise, de/f4.htm as well as http://www.maxqda.de/). The naturalise and depoliticise, and the objectives that they interview fragments quoted in this article were trans- motivate. lated by the author from German to English. Because semi-structured narrative interviews only permit the examination of explicable and discursive Case study and methods knowledge, the interviews were combined with system- atic participatory observations in order to reconstruct Against this backdrop, a pilot study on ‘Virtualisation and the Embodying of Digital Health’ was carried out daily practice. Each interviewee was accompanied in north Germany using a mixed method approach. for at least one hour while using digital technologies; Interviews with 27 persons over the age of 65 were con- one-third of them were accompanied twice within a ducted in 2015 and 2016, surveying their digital prac- three-month time interval. Observational protocols tices: (a) as regards preventive health care, particularly were recorded by the author about (a) how the elderly Urban 5 negotiate with the devices  follow, modify, or resist bodily functions, which are always guided by an ideal, their inscribed purposes; (b) how the sociotechnical and thus follow normative body shaping or health interactions enable fitness or active living at home; behaviour. Correspondingly, physical practices are and (c) how the sociotechnical practices influence the no longer based on individual biographical experiences subjects’ sensory and emotional experiences and ideas and spontaneous desires because, as the result of socio- of health and ageing. The protocols were also analysed technical interaction, subjects are no longer addressed using MAX QDA software. Such ethnographic obser- individually as coherent and spatially situated selves. vations make it possible to analyse implied and embo- Most studies on the use of wearables and fitness apps died knowledge rarely translated into cognitive have been based on the experiences of middle-aged per- processes. In order to reveal this implied and embo- sons. Therefore, these studies leave unanswered to a died knowledge, in keeping with the approach of Stefan significant extent the question of how health practices Hirschauer, localised practices and configurations and experiences of the elderly are shaped by the use of become the focus of our interest. In other words, such devices. In an attempt to close this gap, this study descriptions of local processes and effects are at the identifies and examines responses to digital health tech- core of this methodology. The results from the ana- nologies by elderly persons. lysis of observations supplement the interpretation of the interviews, because they serve as an additional ‘So much is merely a claim’: The disturbances of source of empirical information. For the discussion the introspection and conclusion the study results are complemented and underpinned by relevant international literature Seventy-four-year-old Vasil (all names of interviewees to relate the results to the current state of research. have been changed for data protection purposes), who uses a pedometer (on the advice of his wife) to encour- age physical activity, finds himself in serious conflict. Results: ‘Doing age’ via digital health The low readings (represented by short bars on compu- technologies ter-based presentations) on his device appeared defi- The findings reported here are divided into two subsec- cient compared to those of his wife and made Vasil tions corresponding to the digital technologies used by feel both helpless and frustrated. He reacted by resist- the participating elderly persons: (a) wearables and ing, for example, by casting doubt upon accuracy of the health apps in the context of fitness activities; and (b) sensors. home-monitoring technologies for long-term chronic conditions. Each subsection starts out with a brief This wristband means nothing to me. I will not subject introduction of the technical devices and their pre- myself to being coerced by any modern one-size-fits-all scribed usage. The qualitative study design is such defined limits!.. . I cannot imagine that I want to be that the description and analysis of individual partici- controlled by such a device. With this device, in par- pant data provides an illustration of general patterns ticular, so much is merely a claim and not sufficiently found in the overall data. defined (Vasil, para 16). Vasil experienced as coercion the call to action that he Wearables and health apps in the context of was given by the device. In his view, his favourite way fitness activities of passing the time, working on his lathe, was wrongly Sensory self-assessment and optimisation of practices not taken into account. Before using the wearable he were not invented by digital technologies, for example experienced himself as physically active. His activities 55 56 see Legnaro and Zillien. A paradigm shift, for in the craft room gave him positive sensory and emo- example, from diary entries to digital self-assessment tional feedback. Therefore the wearable confuses his results from the fact that sensors and web-based inter- sensory introspection by calling it into question. After faces permit the structural coupling of independently a few weeks of using the wearable, he decided against produced personal data with those that have already continuing. This in turn gave rise to a vehement dispute solidified into norms. Investigations into digital within the family, where Vasil’s removal of the wear- health practices with wearables designed to monitor fit- able was seen as an indication of his unwillingness to ness thus show that the use of digital technologies actively work on his health. In this conflict, the wear- changes subjects’ sensorial self-perceptions; they able was attributed with helping Vasil to overcome encourage users to be less influenced by spontaneous health limitations from which he has been suffering. individual introspection. Sensorimotor functions are In Vasil’s view, his wife’s concern was transformed replaced by an objectification of the body. This results into intimidation and duress in the sociotechnical inter- from the algorithmic processing of sensory-recorded action; he felt bossed around and supervised. By 6 DIGITAL HEALTH contrast, his wife directed her appeals for more exercise extended period of time, there should be no diagnosis to the wearable. In this tension between the two elderly of any significant change. Within the context of the spouses, the wearable assumed the role of a mediator, sociotechnical interactions, therefore, Ingrid’s body but one that undermined privacy and obscured differ- became a factor of mistrust: on the one hand, it was ence in interests. The wearable was supposed to provide seen as being responsible for the social exclusion if it the evidence that Vasil does not move around enough. failed her; on the other, as a result of mistrusting sen- In turn, this was supposed to appeal to his sense of sory introspection, it was no longer possible to experi- obligation, resulting in him increasing his level of phys- ence whether a stress limit had been exceeded. Sensory ical activity. However, the sociotechnical interactions introspection was proven, for Ingrid, to be unreliable. led to an increase in Vasil’s feelings of guilt. At no Instead, the digital display became a warning system in point was it discussed, however, whether his back and an area of uncertainty; a permanent change in average thyroid gland problems may have been caused by life- readings as well as an unexpected increase in readings long physical labour (and this is highly likely) and triggered fear and concern. whether those ailments could be at all alleviated by an increase in physical activity. In the course of the interview, Ingrid identified the Whereas Vasil’s experiments with the pedometer and number 120 as a symbol of health and capability. As the visual graphs of his performance gave rise to conflict the stability of a number now symbolised health, it and guilt and confused his sensory introspection, Ingrid, became a one-dimensional phenomenon that could be an active 72-year-old widow, experienced change in the interpreted as a controllable form of exercise, thus perception of her own body as the result of wearing a making it appear as a product of will and self-disci- heart-rate monitor watch with chest strap. Her socio- pline. Through the use of the digital device, health technical interactions occurred as part of a walking becomes synonymous with guidance by statistical group for senior citizens. This is her report. means. Health was thus turned into something that could be measured rather than experienced. In conse- My heart-rate monitor shows the heart, my heart. It quence, the wearable reassured Ingrid that her exercise shows me what my pulse rate was when I was walking was a health-promoting activity. in the park. That’s very important to me because, if my pulse rate is too high, this is harmful. It can make me ill Ingrid did not choose web-based algorithmic data because it stresses my heart. And I need to handle my processing to interpret her data because of her limited heart with care [laughs]. In the end, I don’t want to end access to web-based interfaces. Instead, she sought an up in a senior citizens’ home and not be master in my analogous exchange with her fellow male and female own house.. .. Marlies Hoffmann [name changed: runners in order to understand her readings. The par- person from the same senior walking group] can’t ticipatory observations showed that this differed from walk with us anymore, since almost three months the example of Vasil. The exchange between Ingrid and ago. I don’t know what that other symbol is ... her group members had a specific character because it I can’t remember. Recently, when I had forgotten to occurred in situ and was entrenched in empathetic social put the chest strap on, I had a completely insecure relationships. First, the comparisons were based on gen- feeling. I wasn’t sure the whole time if I was really eral descriptions of bodily practices and physical well- walking okay. Of course I feel the strain ... even with- being. Stress and worries were cited as reasons for devi- out the strap, but it’s strange without it. I just have to ations in readings in order to explain unexpected pay attention that the numbers stay the same. At my increases. Such explanations in turn made it possible age, if you just once can’t continue, then you never get for the others to be reassured, thus strengthening the back up again. And that happens in old age faster than team spirit. Second, the readings from older people you think (Ingrid, para 3). are generally significantly higher even on average than those in the tables given by standard providers of pulse According to Ingrid’s interpretation, there is a chain of monitors. The senior running group thus generated new equivalence linking high numbers, high pulse rate, average readings on the basis of their own digital damage and social exclusion from the walking group. graphs. Third, individual characteristics were included Social exclusion would result from not being able to in the comparisons: ‘Marlies Hofmann had always been participate in the exercise; in Ingrid’s case, synonymous a hotspur’ was said in the course of the interview, and with the loss of the social contacts she had forged there, her pulse rate generally increased faster than that of as well as losing her independence, culminating in her other runners. This was interpreted by the group as seeing herself eventually being committed to a nursing part of her disposition and thus not as a cause for con- care home. In order to maintain her social integration, cern. (The sociotechnical interactions of elderly subjects the numbers would have to remain stable. Over an are generally more strongly accompanied by an Urban 7 analogous exchange than is envisaged for web 2.0-based driven interactions, elderly subjects tend therefore to sharing of individual data, see Copelton. ) modify the script. Within these sociotechnical interactions, social phe- nomena such as exclusion and the loss of independence I must admit that during the first days, I tended to say are debated. Health itself is viewed from its negative ‘Ok, I’ll bring your tea upstairs’, because that meant end, i.e. physical deterioration. Exclusion resulting going upstairs. And that is 15 steps, equal to 30 points, from the loss of independence and individual effort as there and back. Well I may have said that, but it was the prerequisite for health are naturalised in these meant more as a joke. I really don’t need that. Ok, it is sociotechnical interactions. The primary topic is thus good to stand up more often and then you can exert a bit not physical capability, but the individual’s entry into of influence. My aim right now is to find out how you a low-performance stage of life, i.e. that of frail old age. can fool that thing. And it is possible. You can swing In this context, the body becomes a potential double- your arms, but only in a certain way. You have to find deficit experience. Therefore, despite the fact that out which ones are counted as steps and thus as points. virtualisations can be a source of pride and delight if So, you can sit in comfort, watch TV and just do this readings are stable (as was evident in the interviews), [swinging of arms]. That is quite ok, I tell myself. This and that Ingrid felt that the sociotechnical interactions will also increase my muscles soon, if I continue with had broadened her scope of action  she could affirm that. But you are able to chalk up one or two hundred her physical activity as health-promoting and her body points, just during one TV programme. Or you can get as capable and strong  these virtualisations also trig- up and walk around the room. We have a large sitting gered emotional responses such as worry, anxiety and room, and when I do a round in there, it always adds up fear; and sensory introspection was reduced and to, I don’t know, 40 steps (Dinja, min 16:35ff). replaced by enhancing the visual sense. Thus Ingrid’s sensory reassurances of well-being regressed while These sociotechnical practices integrated into the life- assurances were delegated to the device. style habits of an elderly person deviate from the usual imagery of fitness activities shown in the media or in advertising. As a result, Dinja perceives her way of ‘Ok, I’ll bring your tea upstairs’: Ascriptions of doing health as cheating. To sum this up, in all four ageing patterns, the sociotechnical interactions potentially Four other paradigmatic patterns are expressed in the bear negative self-perception. sociotechnical interactions that correspond to the ascriptions of ageing. First are difficulties associated Home-monitoring of long-term chronic with a lack of digital experience resulting, for example, conditions from age-related personal reservations about and uncertainty or suspicion towards the relatively young Let us now turn to digital health practices for the diag- technologies (compare with Urban ). Second, an ageist nosis and management of long-term chronic conditions, design of wearables can handicap the user. Interviewees such as diabetes, asthma, Parkinson’s and chronic car- described displays as difficult to read or the devices as diac problems, as well as the long-term management of difficult to operate with unsteady fingers (see the other critical conditions. Digital technologies intended remarks by Hilde in the following section) (compare for home illness management are designed less as self- 64 65 with Charness and Czaja and Charness ). Third, a knowledge-enhancing technologies, than they are as repurposing of the digital device scripts was uncovered technologies to enable one or others to monitor and during the interviews and ethnographic observations: assess bodily functions, locations and abilities. The for example, instead of using heart-rate monitor aim of low-threshold, long-term monitoring is, on the watches to improve performance, the dominant motive one hand, to ensure individual autonomy and thus care was to monitor individual accomplishment and bodily and nursing at home. Digital technologies thereby functions in order to maintain ability or to avoid phys- enable elderly impaired individuals to age in place, in ical decline. Using the device in a way other than a non-clinical setting. The aim is meanwhile to substi- intended by the script signifies an inherently experience tute care provided by human carers and/or the use of of deficit by the user (as illustrated, for example, health and social services (at least in part) and thereby 7,68 by Ingrid above). Fourth, reported practices often ease the burden on health care systems. On the other deviate from the commonly used notions of fitness hand these in-place-monitoring practices open the pos- activities using digital technologies that are designed sibility for new data-assisted diagnoses: a new, much for young and middle-aged subjects, like able bodies more detailed patient’s medical history can either help running with wearables and/or training with heart- to adjust medication and/or intervene to prevent rate monitor watches. In the sociotechnical demand- decompensation. 8 DIGITAL HEALTH procedures. Other interviewees also reported having ‘Always all day long, three times a day’: Elderly difficulties in understanding the devices. as diagnostic agents Home-based monitoring technology offers disabled Which bars mean what and how much and from where. subjects (and their families and carers) the option to For example, calorie consumption, I have no idea what identify an emergency on the basis of actual data. that is. Because they can’t monitor my food, so it obvi- Sociotechnical interactions thus help these individuals ously has nothing to do with eating (Helen, min 13:26). to transform uncertainties into the ability to act, as evident in an interview fragment from 76-year-old For Helen, a very lively 70-year old suffering from dia- Selina, who suffers from a heart condition. betes, the current standard combination of apps with other technologies  e.g. insulin pumps, blood sugar I am basically predisposed, because my father died monitors, blood pressure monitors, from heart failure at the age of 60 years. And my Cardiogoniometrie (CGMs) and step counters  con- brother has heart problems, too. My readings were stitutes a particular factor of uncertainty. As a conse- always fantastic, 80 to 120, but that has changed with quence, Helen not only felt controlled, but she also felt age. My blood pressure jumps  sometimes too high, unsure as to how and what data were being generated sometimes too low, rarely normal. And for that reason, as well as what the various visuals were telling her. This it is very important for me to know that, if there is a lack of technical understanding also leads to uncer- real problem, I can call for help (Selina, min 4:09). tainty in the timing of individual measurements and self-regulation. These new demands created tensions Her readings allow Selina to cope with a potentially in Helens life. Her sensory experiences of healthy nutri- hazardous situation. What was subject to sensory intro- tion (e.g. taste) and experiences of physical fitness (e.g. spection before the introduction of the sociotechnical feeling hale and hearty) were confused by digitally pro- practice manifesting itself, in this case, as a metric visu- cessed recommendations. Moreover, the sociotechnical alisation, now appears as an objective presentation of practices forced her to give up habits she had acquired Selina’s state of health. Thus, Selina has reduced her and become fond of over the years, in order to meet the own level of worry and anxiety by replacing sensory affordances of the scripts. She interpreted this as a set- introspection and relying on a digitally produced back of well-proved self-knowledge. numerical image. This method of data processing reas- Another interviewee, the lively 72-year-old Alex with sures the subject by enhancing her own ability to act a migration background, complained of incompatibility and thereby calms her. But such practices are asso- between the sociotechnical practices with the infrastruc- ciated with an increase in the responsibilities of the ture and the routines in his less developed country of subject. The responsibility for assessments previously origin, where he usually spends his summers. done by medical staff is transferred to users in general in this case, Selina  and this new accountability gives At home, we have no internet. And we eat different. It is rise to new anxieties. like a cure for me. But it is all so different, that my medical routines.. . they don’t work out (Alex, min 9:11). So I have been asked to measure my blood pressure from time to time.... I basically always found it quite In some cases not only does the integration of these a strain to measure my blood pressure, because it is practices become a strain for the subject, but also his or often too high. Or it jumps, is irregular.... Always all her daily confrontation with the output from these day long, three times a day, having to measure my sociotechnical interactions. blood pressure makes me nervous. I have simply had to do it, but I feel that it is quite a strain.. ..Iam It really takes it out of you, if you are constantly being basically a little bit afraid of negative consequences reminded of it. But because I am in this programme, (Selina, min 13:02). I have to take a blood sample four times and check.... These are some of the other problems you then have Sociotechnical interactions are often experienced as an (Alex, min 8:33). added strain, and they can trigger anxiety or fear. One of the reasons for this is the necessity for the elderly Previously, diagnosis and discussion of results took subject to become a competent diagnostic agent. The place in a medical setting like the doctor’s office, a elderly are required to become familiar with the digital place separate from a patient’s home environment. media and acquire new skills. However, many of them Home-based self-monitoring reinforces patients’ per- remain insecure in carrying out such practices because manent awareness of their own chronic illness or condi- they really do not completely understand the digital tion when they are at home. Thus physical impairment Urban 9 takes on a greater presence subjectively: sociotechnical A particular differentiation is made between two interactions promote hyper-awareness of one’s physical generations of passive monitoring technology. deficits, especially the weakness and frailties of the body. Whereas first-generation systems  for example, emer- This increased awareness led Alex, for example, to gency call devices  are connected to a call centre that 70,71 experience severe physical discomfort. relays information, second-generation systems monitor spaces in which an emergency call can be triggered without the active involvement of the impaired ‘They are so very tiny’: Enabling, frustration and person; these devices can summon help for an individ- compensation ual in an emergency situation in which he or she may be Another phenomenon that was revealed in the inter- no longer able to place the call themselves. Sensors of views and through the accompanying observations this generation are able to filter out uncommonly rapid was that self-monitoring and the associated self-reliant or unaccustomed movements from routine patterns like reading and evaluation of the recorded data gave rise to opening doors, turning over in bed or walking across new risks, because the subject may not be able to cope the floor, encoding deviant movement as problematic; properly with the devices, the technology or the overall the information is then relayed to web-based 72 75 situation in home-based sociotechnical interactions. interfaces. Hilde, a very cautious lady with multiple impairments, However, the scripts of an ambient monitoring talks about her coping strategies. system do not always correspond to the value systems of the users. Interviewee Hilde, who lives on her own, Butithas takenme two or threedays tolookatit suffers from a pulmonary disorder and uses a first-gen- again.... I’m not really sure what happens when I press eration emergency call system, provides a good illustra- this. And in the beginning, you don’t really have the tion of such a divergence of values. courage.... But these symbols, I don’t know. They are so very tiny.. .. Well, that’s the way it is. I have accepted From time to time, I get coughing fits  have had them that then; that’s the way it is. Micha [her daughter] has for years  that make me panic, because I cannot figured it out; she put it on and kept pressing; I was quite breathe, and fear that... I notice then that there is an horrified.... Of course, yes. I did not want to do anything emptiness developing in my head [and] I am afraid of wrong, you know (Hilde, min 28:53ff). suffocating. In that situation, I have developed a tech- nique in which I pant in order to get more air gradually. Hilde’s coping strategies resulted in her partial inability I am coping with that quite well, and I do not panic any to deal with the demands of the device. The conse- more. But I still consider the situation quite dangerous quence of this could be lack of provision or care and at times. Once I was almost about to press the button. possibly even an incorrect response to the readings. But then I hesitated a bit longer. It would have taken Hilde’s negative emotions and lack of sensory control the ambulance 20 minutes to get to me, but my brain were succeeded by unreliable practices, for which no would have already suffered severe damage in that time. sensory experiences could adequately assist her towards I find that prospect worrying; I’d rather not be there at health-promoting behaviour. all. And by and by, my breathing improved, and I was quite glad that I had not raised an alarm unnecessarily (Hilde, min 16:32). ‘Or whether that appears somewhere’: About scripts, desires and values Whereas the script of the technologies includes the In addition to the active monitoring technology dis- speediest possible intervention and thus the initiation cussed above, which provides real-time responses to of life-saving measures, consequential damage cannot biological changes, other aspects become apparent be ruled out in this way. The technologies subscribe when we consider passive monitoring technology. inherently to an ethic of saving life at any price, Passive monitoring devices are marketed as sensors which may diverge from the users’ notions of a life that gather and analyse domestic behaviour and rou- worth living. In consequence of such conflicting tines over time, so as to alert the user when there is values, Hilde actually preferred to be in a situation of unanticipated deviation. Such monitoring sensors panic and fear of death without sociotechnical inter- are also known as ambient assisted living or smart action. Just by rejecting the use of the digital technol- house technologies. Some examples of these are passive ogy, Hilde stayed true to her values. infrared movement detectors (PIRs), flood detection Other interviewees feared that monitoring may make instruments, fall detectors, bed occupancy sensors, their lifestyle choices public and embarrass them  how bed epilepsy sensors, chair occupancy sensors, electric clean they were, how cluttered their homes were, what usage sensors and door contact sensors. their sexual practices were. In that way, ambient 10 DIGITAL HEALTH monitoring systems could potentially undermine indi- Even though the digital technology was employed fault- vidual privacy. Such concerns were raised, for lessly, the sociotechnical interaction posed problems for instance, by Helen, who uses a bed epilepsy sensor. the user. Whereas for the medical emergency team the alert was over because it was identified as a false alarm, I still want to blow my top and make love. I don’t know Ming suffered from sleep disorders and remained whether I should switch it off then, or whether that unsettled as a result of the incident. She developed ner- appears somewhere. These things happen. And there vous symptoms, induced by acute awareness of her own are other open questions. I don’t know where to get defencelessness and frailty, made apparent through the the answers (Helen, min 15:54). sociotechnical interaction. Active and passive monitoring technologies also, of Sociotechnical interactions thus limit the options for course, expand the scope of action of the elderly; the lifestyle choices and some bodily experiences. Helen interviewees would not have used them otherwise. But was confronted with digital technologies that show little is discussed in the literature about the effects of some bodily activities as deviating from statistically sociotechnical interactions that, at the same time, pro- normal routines. Her sexual behaviour could be inter- voke negative emotions such as anxiety, fear or shame. preted by the device as physical risk and trigger an Further, in such constellations, the senses of the elderly immediate alarm because of the way the algorithm do not provide compensatory information or orienta- works. This built-in element of the device and the tion: rather, the sociotechnical interactions create corresponding sociotechnical interaction actually pre- incompatibilities with spontaneous needs or familiar cludes, then, the subject’s being able to satisfy her practices, whereby these needs and practices are tech- sexual needs. nically marked as deviations. But above all, digitally Other elderly persons spoke of their fear that their recorded deviant behaviour could be taken as indica- privacy would be eroded and that the technology could tors of ageing (e.g. the accumulation of clutter or being result in misjudgement or false assessment by medical overstressed). And, in turn, indicators of ageing could professionals or family members of their state of health be interpreted as signs of the need for intervention e.g. relaying misinformation about falls or other devi- possibly against the will of the persons concerned. ant behaviour. Unwanted alarms triggered by a device can result in increased anxiety and insecurity. An Discussion: Digital ageing and its obligations 84-year old interviewee who lives on her own with a and frustrations first-generation emergency call system talks about an incident that caused her great anxiety. She accidentally As we have seen above, elderly users of digital health pressed the button on her emergency call device  a technologies are being enrolled as active agents in wearable on her wrist  in her sleep. managing their own diagnosis and treatment in non- clinical settings. This responsibilisation is characteristic Of course this happened while I was asleep. And I don’t of health care today with its notion of patient-centred hear very well. I always leave the door to my room medicine and patient empowerment. (Next to this, a open; but next to my bed, there is part of the room growing market delivers technologies as internal and then there is the hallway. The station for the devices, like pacemakers or implant cardioverter defib- device is in the sitting room. And I did not hear it. rillators, which put much less agency upon the users, I did hear the phone ring; but, by then, my ears had see Oudshoorn. ) New digital health technologies for already missed these other sounds. So, I thought that it the management of long-term chronic conditions have was just a prank call in the middle of the night. And enabled the shift from clinical to home care, and with some minutes later my doorbell was ringing and the that a corresponding shift from professional supervi- door to my flat was flung open. I lay wide awake in sion to patient self-help. Thereby, we retrace increasing my bed, full of fear. Of course, I was totally shocked. patient empowerment. Digital health technologies Because I thought that somebody had spied on the allow new ways to experience the body, and new prac- phone to see if I was at home and then made sure at tices and embodiments of ageing. In sociotechnical the door. [Question by the interviewer: Did the person interactions, digital technologies appeal to the trans- introduce himself as a paramedic?] That’s what she formation potential of the individual and raise the claimed! But I did not believe her. I said: ‘I’m fine. hope of extending physical capability and autonomy. I don’t need help... [and] I won’t let you in’. I had In so doing, these technologies address their users as the chain on the door. She said that she could unlock active agents who can perform on their own the chain as she had the key for that, too. She was initiatives. wearing a uniform, but you know that is no evidence To understand how digital technologies enable these days, either (Ming, min 7:54ff). the elderly to become competent diagnostic agents, Urban 11 we should have a closer look at how these technologies they also function as limitations in the form of an work. With their numerical representations of bodily amplifier of a hegemonic ideal of ageing. functions, digital health devices guarantee an appar- In our second case, home-monitoring technology for ently objective assessment of hazardous or potentially long-term chronic conditions, we discovered new chal- hazardous situations: diagnostic logic presents some- lenges that the digital technologies imposed on the eld- thing previously invisible in a visually usable manner. erly. In ordinary face-to-face consultations elderly Digital visualisations as (apparently) objective presen- patients receive diagnoses and advice from medical pro- tations carry a high degree of validity. Technically fessionals whom they have no choice but to trust. generated presentations, graphs and illustrations are (Sarah Maslen presents this in detail, and how doctors interpreted as neutral; they are seen as endowed with use their senses to develop a diagnosis that is therefore ‘mechanical objectivity’. However, these visuals in much more complex than a data-based one; see particular do not reveal anything about what they Maslen. ) But long-term trust-based relationships doesn’t reveal, namely that it is not a verdict about the with professionals usually helped in getting subjects to concrete body at all. Although digital images sup- comply with the therapy. However, there was the inher- posedly process individual data, their reference values ent risk that subjects would misunderstand the instruc- are based on standardised bodies. Medical and tech- tions or disregard them. Home-based self-monitoring nical images conceal the highly complex technical, and the associated self-reliant reading and evaluation social and cultural conditions under which they have of the recorded data gave rise to new risks, because the been created. Their process cycles remain hidden, as technologies have the potential of encouraging do their algorithms, picture-processing software, com- inappropriate responses and rendering individuals parative data and compilation. In particular, it is the attempting to use them unable to properly cope. reaction to such an unquestionable representation of Taking into account other studies, we find similar data that may reduce sensory introspection and respect- results. The IN-TIME pilot study on digital monitor- ively change bodily experiences as well as physical ing in cases of chronic heart failure shows, for exam- practices. ple, how, under consideration of a patient’s medical Let us first have a look at what this means in our history, monitoring can trigger interventions  ranging first case, the sociotechnical interactions with wear- from adjustments in medication to calling for emer- ables and health apps in the context of fitness activ- gency help  once any abnormalities have been ities. The interview fragments above show the extent detected. The interface to a telemedicine centre not to which sociotechnical interactions interweave the only prevented decompensation, it also made it pos- technical with the corporeal. For our elderly subjects sible for users to enjoy greater mobility. Another (similar to the way in which the technology works for qualitative study from the Netherlands on self- persons in other stages of life), the digital practices monitoring of blood glucose (SMBG), including enable enhancement of processual materiality, sensory self-regulation, showed that many patients measured experiences and emotions. But encoded into these their glucose concentrations less often than recom- digital interactions is a morality that encourages spe- mended. Many participants in that study did not cific practices, and stimulates certain sensory and emo- know how to respond correctly to the glucose readings tional experiences of elderly subjects within the actual and, in consequence, often maintained poor glycaemic networks into which they and the digital devices are control. incorporated. In this sense, digital technologies func- The interview fragments above show that the gap tion less as neutral fitness coaches because the digital between the technology scripts  and, by implication, fitness practices of the elderly are rooted instead in the the demands, perceptions and goals of the professionals ‘plasticity perspective of age and ageing’ and originate  and the adaptations of these technologies in the from the primacy of ‘age prevention’ (compare with everyday lives of elderly users leads to tensions. In Denninger et al. ) The implication here is that ageing turn, these tensions can have a negative impact on qual- is something that has to be prevented, or at least ity of life and an individual’s own choices. In addition, delayed. Thus, in accordance with sociotechnical prac- digital health technologies must be integrated into tices, ageing is to be interpreted as a personal decision normal daily routines (compare with Webster89). or rather something controllable. The potential conse- Often this process enjoys only limited success because quences of an elderly person’s failing in these efforts the elderly  as seen in the case of some interviewees can be loss of social recognition and/or social exclu- stick to their familiar and long-practiced routines, even sion. This prescription provoked anxiety and uncer- if and when they prove to be incompatible with the tainty among our subjects, or their rejection of the technical device scripts. Changes of location or to rou- technology. So, although on one hand the digital tech- tines are seen as difficult or divisive, creating additional nologies function as facilitators, on the other hand uncertainties. 12 DIGITAL HEALTH Questions have been raised in the literature about the Whereas, in general, national public health pro- ethical implications of ambient monitoring systems as grammes see technical upgrades of home-based moni- surveillance technologies. For example, as we have toring technology as a societal task and millions of seen above, users fear that monitoring may reveal to Euros are spent on interventions, the emotional and others their personal practices (e.g. sexual expression), sensory experiences due to digital practices remain habits or lifestyle choices, that they would prefer not to mostly neglected. The potential of these digital prac- be publically known. In other words, ambient monitor- tices to motivate older persons is thus approached as a ing systems were seen as something invasive, which could purely technical challenge. On that account, systemic potentially undermine their privacy. As a result inter- dysfunctions are generally perceived to be individual viewees felt that limits had been imposed on their lifestyle personal malfunction(s) or failure, which requires, choices or their emotional and sensory experiences therefore, a private solution (or perhaps improvements through technological intervention. This happens in the way that the technology is applied). Negative because passive and active monitoring technologies emotions experienced during the sociotechnical inter- function as subsystems of risk estimations, whereby digi- actions thus appear as being symptomatic of old age. tal systems function by identifying deviations from stat- Physical discomfort and mental distress, special istically determined normal routines. Risks could be demands and anxiety are thereby separated from the indicated by the length of time spent out of bed or outside scripts of digital technologies. of the house during designated sleeping periods. These For the elderly to carry out such home-based moni- digital technologies are programmed for risk evaluation toring, as our examples show, it is essential that the by professionals and service providers, whose task it also digital health practices are linked to other e-health fea- is to minimise any determined risks. For the very tures such as medical and technical supervision and reason that they are risk assessment tools, these socio- support. Self-monitoring can only work with add- technical interactions generate incompatibilities with the itional hands-on medical support and professional spontaneous needs, desires or familiar practices of users. back-up. The development of additional digital inter- In ambiguous cases, strict application of such risk assess- faces such as electronic patient records, other networks ment tools could result in loss of autonomy, independ- and digital interfaces is a vital requirement in conse- ence and self-determination for an impaired person. quence of self-monitoring. The lack of such compo- Some elderly individuals therefore took a very ambiva- nents of the health care systems can evoke serious lent stance towards assistive technologies because they sources of error and additional strain on the elderly. tended to highlight failure or decline, symbolising Finally, let us summarize the main results in direct age-related frailty and helplessness, the absence of self- relation to the three questions presented at the begin- sufficiency and subsequent dependency (including ning of this paper. To answer the first question, on how dependency on such technologies). the technologies generate (health) practices, we now can identify two aspects. First, an increasing demand for such sociotechnical interactions arises from the hege- 5. Conclusions monic value system that regards successful ageing as Giving the current move in medicine and public health the product of active, healthy and autonomous elderly towards digital health technologies, we are dealing with persons as diagnostic agents. Digital health practices in a new form of guidance for older individuals. In terms of the battle against ageing thus become the obvious a neo-liberal activational imperative, the state no longer answer to this invocation of the individual as a ‘pre- guarantees service provisions but offers help towards ventive actor’. The sociotechnical interactions turn self-help, conditional upon an individual’s personal into a perpetual preventive action loop. Second, the input. If this successful ageing fails at any stage, the sociotechnical interactions reconfigure the concept of failure is attributed to the elderly individual  whose ageing. Inherent in digital health technologies is the options for compensatory action are, to a greater or notion of ageing as a pathological process that could lesser extent, limited. Such an activational imperative be overcome or should at least be the responsibility of fails to consider a disparate distribution of physical, eco- the individual. In that way, digital technologies con- nomic, social and educational resources; instead, sub- front users with the necessity to compensate by them- jects naturalise the notion of self-governance, for selves for their deviation from some predefined ideals. example via their digital health practices: In sociotech- Now, let us recall our second question about the nical interactions, individual efforts become meaningful kind of senses and emotions described in these socio- and necessary precisely because they are motivated by technical interactions. In sum we can say that, whereas individual notions of successful ageing, even though the the enabling of autonomy and/or physical fitness, so-called health-promoting practices invariably proceed for example, are celebrated as consequences of digital with negative emotions such as fear, shame and anxiety. health technologies (compare with, for example, PWC ) Urban 13 2020. Le nume´ rique au service de la modernization et de negative emotions displayed by our elderly interviewees l‘efficience du syte` me de sante´ . Report no. 1, Ministe` re were treated as personal predicaments. In addition, the des Affaires sociales et de la Sante´ , 5, Paris, July (2016). data showed that vision was considered the most cru- 2. Bundesgesundheitsministerium. Gesetz fu¨r sichere digitale cial sense in those assemblages. We also saw that, kommunikation und anwendung im gesundheitswesen sowie whereas certain technologies designed especially for zur a¨nderung weiterer gesetze. 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‘This really takes it out of you!’ The senses and emotions in digital health practices of the elderly

Digital health , Volume 3 – Apr 12, 2017

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References (108)

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Pubmed Central
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© The Author(s) 2017
ISSN
2055-2076
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2055-2076
DOI
10.1177/2055207617701778
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Abstract

Wearables, fitness apps and home-based monitoring technology designed to help manage chronic diseases are generally considered in terms of their effectiveness in saving costs and improving the health care system. This article looks, instead, at the digital health practices of persons older than 65 years; it considers their actual health practices, their senses and emotions. In a qualitative study 27 elderly persons were interviewed about their digital health practices and accompanied while using the devices. The findings show that digital technologies and ageing bodies are co-productive in performing specific modes of health and the ageing process. The study shows that digital technologies not only encourage the elderly to remain physically active and enable them to age in place, but also that the use of these technologies causes the elderly to develop negative emotions that stand in a charged relationship to ageing stereotypes. Thereby, the sense of seeing has been place in pole position, while the faculty for introspection declines. This means that age-related impaired vision can result in particularly severe consequences. In the discussion it is debated in which concrete ways that digital health technologies have had a negative impact. The sociotechnical practices associated with wearables conform to the primacy of preventing ageing; passive and active monitoring technologies appear as subsystems of risk estimation, which in turn regulates diverse practices. The conclusion highlights the interrelation between notions of successful ageing and the digital practices of the elderly. Keywords Digital health technologies, health information technologies, health monitoring, doing age, doing health, senses, emotions, gerontechnology, sociotechnical interactions Submission date: 6 October 2016; Acceptance date: 20 February 2017 Introduction provided with information and opportunities for look- Whenever governmental strategies or legal amendments ing after themselves and taking responsibility for their on e-health are published in Europe, they refer to own health and care. In this process, digital innovations demographic change and thus to a future unbearable become drivers for empowering members of the health burden on health care systems. Government strategists care system. By assuming responsibility for the use of and lawmakers argue that an increase in the number of digital technologies, elderly users could improve their older people and thus in the number of chronically ill own quality of care and act preventively, thus making it and persons requiring care threatens to wear down possible for them to lead autonomous, independent and health care systems. Only an up-to-date digital restruc- self-determined lifestyles in the long run. This ultim- turing of the administrative structure as well as of care ately could or should result in a reduction of their and prevention would be capable of forestalling a col- lapse. For that reason, the (future) user of digital health University of Bremen, Germany technologies should be placed at the heart of a general Corresponding author: digital health infrastructure. Placing people at the Monika Urban, Institute for Public Health and Nursing, University of centre means that their health can be more effectively Bremen, Grazer Str. 2, 28359 Bremen, Germany. and adaptively managed and that they can be better Email: murban@uni-bremen.de Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-Non- Commercial 3.0 License (http://www.creativecommons.org/licenses/by-nc/3.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages (https:// us.sagepub.com/en-us/nam/open-access-at-sage). 2 DIGITAL HEALTH impact on the health care system as a whole. Such simplification. It needs to be considered that those eld- wording can, for example, be found in the Strategie erly using digital technologies are mostly middle and nationale de sante 2020, published in summer 2016, upper class and in their third stage of life; see e.g. as well as in the German eHealth Act implemented in Urban. ) Here I focus on digital practices that can December 2015. be performed independently, that are largely self- This apparent winwin situation, it is believed, financed and that are undertaken to preserve or would also benefit the elderly, who are generally seen regain health, physical fitness and thus independence to represent the epitome of strain on the current health for the elderly in their own homes. To that end, two care system. Current developments and innovations in application contexts of digital health technologies for health information technology (HIT) permit a number the elderly will be examined in greater detail: (a) wear- of public health interventions to address different ables and health apps in the context of fitness activities; groups of the elderly as empowered subjects motivated and (b) digital health practices connected to home- to prolong their physical fitness and optimise their monitoring for the diagnosis and management of 36 health with the aid of digital technologies. In add- long-term chronic conditions. In the subsequent discus- ition, the market segment that provides digital health sion I focus on how the digital technologies enable the technologies designed to compensate physical or mental elderly and how they also put new obligations on the impairment is growing. Products include various users. Finally, I attempt to answer the questions raised sensors, wearables and apps, such as emergency call at the outset and I conclude by summarizing the rele- wristbands, blood glucose meters, pedometers, ambient vance of senses and emotions for doing digital ageing. assistive living technologies and nursing robots. Digital health technologies promise (future) elderly persons Theoretical background, case study and health in a supportive and positive setting, thus preser- ving their independence. These technologies will create methods new opportunities for successful ageing, i.e. self- Theoretical background determined, healthy, autonomous and self-responsible ageing. Because of such possibilities, ageing without the To understand how digital technologies co-constitute aid of digital technologies seems to be far less desirable; health practices of the elderly let us first turn to the at the same time, new challenges arise for the elderly. setting of the digital health technologies. The technol- This ambivalence generated by empowerment in ogies are praised and put into practice under the head- conjunction with the challenges of technology-based ing of ‘successful ageing’, the purpose of which is to successful ageing is analysed in the following from a promote health, fitness and independence of the elderly. sociocultural gerontechnology standpoint, for example The idea of successful ageing involves a deficit model of see Joyce and Meika. In this spirit, we will be less ageing that focuses on failing physical fitness and, by concerned with what is technically feasible than with implication, a societal burden, on health impairment the practices of self-monitoring and their physical, sen- with a greater prevalence of chronic ailments and on sory and emotional impacts on the user. This focus will changing psychological structures such as mistrust and be developed on the basis of three questions: (1) How lack of flexibility. In both of these concepts, age do digital health technologies co-constitute health prac- denotes a marker of difference that represents a later tices of the elderly? (2) What sensory perceptions and phase in life, which, in Western industrial nations, from emotions of the user in response to digital health tech- the late 20th century onwards, begins with retirement. nologies can we identify? (3) What role do the senses of Age in this view is a contingent  i.e. changeable the elderly play in the interaction with digital health social phenomenon that depends on historical, technologies? socialcultural, political and economic parameters. In I begin with a brief overview of the theoretical back- the words of the Austrian gerontosociologist Leopold ground and methods. The theoretical concepts of Rosenmayr, age is a ‘social construct’. With this per- ‘doing age’ and ‘doing health’ have been chosen for spective, age is seen to be determined by public health the analysis of digital practices of elderly people. care, the developmental stage of the capitalist system, Therefore, I discuss these concepts initially and then and the organisational structure of retirement security expand them with science and technology studies and of the labour market in general. (STS). Following that, I give a brief survey of sensory In parallel to these sociocultural ascriptions to old studies. This subsection is followed by methodological age, ageing describes a highly individual process of explications, including a subsequent presentation of changes to the organism that are experienced physic- findings from a pilot study on the digital practices of ally, such as changes to skin and tissue tautness as well elderly persons. (The ‘elderly’ is a diverse group; see e.g. as to mental and physiological capacities. It puts into Lindsay et al. . The term is used here as a pragmatic effect its own processes, from a reduction in bone Urban 3 density to erectile problems. In view of these two dif- is concerned mostly with human social practices and ferent perspectives, the sociologist Silke van Dyk understands matter  whether in our case ageing refers to the ‘dual character of ageing’, whereby hege- bodies or digital technologies  ultimately as a passive monic modes of action and processing together with product of discursive practices, our position in the ‘specific interpretive concepts’ of age(ing) are interwo- following is to interpret the material and immaterial, ven with the physical experiences of ageing. The the technological and discursive elements, as co- eminent individual experience can only be lived against constituent. With reference to Karen Barad, that the backdrop of institutional processing regulations which is material will be seen as integral parts of an and interpreted with the aid of cultural representations. entire interactive development process: thus, not only For that reason, social invocations and standardisa- ageing bodies, but also digital technologies become co- tions both enable and limit the experiences and prac- producers of a continuous process of materialisation of tices of ageing. The body is thus at the same time ageing. medium and instrument, product and producer, of In the terminology of science and technology studies everyday experiences and life in old age. (STS), doing age is part of an interrelationship network These ideas provide a basis for the ‘doing age’ of society and technologies. This performativity is 1820 29 approach. In parallel to the classic definition of reflected in the concept of sociotechnical interaction. ‘doing gender’ by Candace West and Don Sociotechnical interactions incorporate values that are 21 30 Zimmerman, doing age can thus be defined as gener- generated and stabilised by society. Users with their ating age differences (limits, groups, phases) that are expectations and practices as well as digital technolo- not natural or biological, but that, once constructed, gies with their algorithms and design are caught in the are treated as if they were natural entities. field of tension between the contexts of their social 30,31 Accordingly, people age performatively through social genesis and actions. Users and their practices are interaction. If we apply Hirschauer’s concept of ‘situ- not predetermined, and the use of technical devices is ational gender construction’ to age, this means that age not restricted to only one manner of application. is performed, updated, continued and maintained However scripts exist for the human subjects as well through significant social interactions. Ageing is thus as for the technical devices: they function like a pro- a social practice, and social structures are reproduced gramme of action to justify objectives, practices and and shaped through situational actions. It is a continu- corresponding ideas, for example notions of ageing or ous process of interactive production of material  e.g. health. These scripts can be modified, i.e. adapted to physically fit bodies  and non-material aspects, such as habits, requirements or abilities. In this way, the tech- the ideal of successful ageing and emotions like pride in nical becomes interlocked with the corporeal and one’s own independence. Doing age thus brings experiences undergo (re-)coding. To answer the ques- together performance  the actual physical practices tion as to how digital health technologies generate and presentation  the use of specific codes, for (health) practices, the materiality of the body is inter- example, health practices or ageing-in-place. preted as a process. Therefore the scripts  both of This ‘embodying of ageing’ is characterised by the technical involvement and corporeal practices  will view that signs of ageing are deviations from the ideal  be of great interest in the following analysis. the youthful and powerful body. Thus the embodying The second and third research questions direct our of ageing takes the form of a battle against ageing. This attention towards sensory experiences and emotions in was already stated by Hepworth and Featherstone in response to digital health technologies. This is of par- 1982. In this struggle, health plays a key role. Health ticular significance because digital technologies are said can also be understood in terms of ‘doing health’. This to threaten a disembodiment of practices: somatic concept, too, starts from the notion that active subjects experiences would be reduced to mere data flows and in real settings model their bodies in accordance with devices. Bodies would thereby simply become codified social relationships and specific knowledge. Thereby and rendered digital (compare with Tucker and they naturalise the effects of the practices and health Goodings ). In contrast, in this article the body is itself gets constituted. So in this sense, doing health thought of as genuinely engaged with the material becomes an analytical strategy that views a life-world technological reality. Therefore I will recognise the phenomenon such as health as extant only when it is body as an affective element of experience in a broader being implemented. assemblage. Its senses and sentiments are understood With reference to Judith Butler’s notion of per- as meaning or sense making. Sensing is (as much as are formative materialisation, doing age and doing material and immaterial aspects) integrated into an health in this sense refer to a linguistic and a visual interactive process of development; and, at the same designation, and to a physical action as a perpetually time, it mediates the relationship between society and repeating and self-referencing practice. While Butler self, body and mind, knowledge and materiality. 4 DIGITAL HEALTH The senses therefore reach out as sources of informa- fitness activities; and (b) within the context of home- tion as well as provide us with a way to make sense of based care for chronic illness. Even though praxeology our environment and our inner world. Whereas the is generally sceptical towards the interview as a survey senses of sight, hearing, taste, smell and touch are method, in this case interviews are well-suited to the modes to provide knowledge about our external envir- analysis because they aim to uncover emplaced know- onment, other senses such as the sense of pain, the sense ledge. Through interviews we might gain insight into of our own muscles and organs, our senses of balance, how the research participants represent and categorise movement, temperature, time, etc. give us access to the their lived and situated practices, sensory experiences, 39 40 internal world (compare with Hunter and Emerald ). emotions and values. (Kathryn Geurts pointed out that Nevertheless, sensory experiences are intermingled with senses and sensations even depend on language  not one another as well as with emotions, meanings and just to articulate them in one’s own social context, but 41 48 memories. Among the multiplicity of senses, vision to even make sense of their operation. ) Interviews are or eyesight is considered to be the most important in therefore understood as context-dependent representa- Western societies, where the progress of science, tech- tions of experiences. (The interview is ‘where multisen- 42,43 nology and object-centred thinking matters most. sorial experience is verbalized through culturally Like the concept of doing age, sensory and emo- constructed sensory categories and in the context of tional practices are identified as being specific to the intersubjective interaction between ethnographer social situations. They are neither simply constructed and research participant’. ) nor inscribed in the human body; rather, the senses are The study participants included males and females, developed, educated and shaped in the bodily engage- mostly middle class, and in their third phase of life, ments with the world. This creates a structure to the generally in their late sixties and seventies. The oldest world that both enhances and constrains sensory and interviewee was an 84-year-old woman. Most interview 44,45 emotional experiences. Senses and emotions there- partners were of German descent; a few had back- fore are situated and processual: sensing is a social grounds of a different nationality. The health condi- practice; social structures and culture as well as tions specified by the interviewees varied between gender- and class-specific concepts are reproduced; being mentally and physically fit to suffering from at the same time, sensing is shaped. In other words, chronic medical conditions. The interviewees were ‘sensory experience is socially made and mediated’. recruited from bulletin board postings in centres for Sensory studies point out that bodily conditions like senior citizens and senior citizens’ sport associations, health and illness can be sensed (nociception).This sen- medical practices, supermarkets, other contact points sing relates to specific forms of knowledge that allow us and through advertising in a local newspaper. Some to translate sensations into a judgement (diagnoses) interviewees were won through a snowball effect. The about a state of being. This judgement is, again, inter- selection criteria we used were the level of interest in twined in sensing one’s own body, through practices as participation and usage of specific digital technologies. well as through devices with which he or she chooses to The survey consisted of semi-structured narrative use (compare with Pols ). Subsequently, digital tech- interviews, lasting between 45 and 95 minutes. The nologies influence the practices and therefore create elderly interviewees were asked about self-monitoring new sensory experiences. Sensations and senses are practices, physical and emotional impacts as well as highly socially significant; therefore they will be exam- sensory experiences. The interviews were transcribed ined in some detail in this analysis. The focus here is on by student assistants using f4 transcription software, practices, sensations and emotions, and on the new and analysed by the author using MAX QDA qualita- forms of knowledge and subsequent moral judgements tive data analysis software (details of the software pub- that they may generate. Further, the analysis is con- lisher can be found at: https://www.audiotranskription. cerned in particular with the aspects that they stabilise, de/f4.htm as well as http://www.maxqda.de/). The naturalise and depoliticise, and the objectives that they interview fragments quoted in this article were trans- motivate. lated by the author from German to English. Because semi-structured narrative interviews only permit the examination of explicable and discursive Case study and methods knowledge, the interviews were combined with system- atic participatory observations in order to reconstruct Against this backdrop, a pilot study on ‘Virtualisation and the Embodying of Digital Health’ was carried out daily practice. Each interviewee was accompanied in north Germany using a mixed method approach. for at least one hour while using digital technologies; Interviews with 27 persons over the age of 65 were con- one-third of them were accompanied twice within a ducted in 2015 and 2016, surveying their digital prac- three-month time interval. Observational protocols tices: (a) as regards preventive health care, particularly were recorded by the author about (a) how the elderly Urban 5 negotiate with the devices  follow, modify, or resist bodily functions, which are always guided by an ideal, their inscribed purposes; (b) how the sociotechnical and thus follow normative body shaping or health interactions enable fitness or active living at home; behaviour. Correspondingly, physical practices are and (c) how the sociotechnical practices influence the no longer based on individual biographical experiences subjects’ sensory and emotional experiences and ideas and spontaneous desires because, as the result of socio- of health and ageing. The protocols were also analysed technical interaction, subjects are no longer addressed using MAX QDA software. Such ethnographic obser- individually as coherent and spatially situated selves. vations make it possible to analyse implied and embo- Most studies on the use of wearables and fitness apps died knowledge rarely translated into cognitive have been based on the experiences of middle-aged per- processes. In order to reveal this implied and embo- sons. Therefore, these studies leave unanswered to a died knowledge, in keeping with the approach of Stefan significant extent the question of how health practices Hirschauer, localised practices and configurations and experiences of the elderly are shaped by the use of become the focus of our interest. In other words, such devices. In an attempt to close this gap, this study descriptions of local processes and effects are at the identifies and examines responses to digital health tech- core of this methodology. The results from the ana- nologies by elderly persons. lysis of observations supplement the interpretation of the interviews, because they serve as an additional ‘So much is merely a claim’: The disturbances of source of empirical information. For the discussion the introspection and conclusion the study results are complemented and underpinned by relevant international literature Seventy-four-year-old Vasil (all names of interviewees to relate the results to the current state of research. have been changed for data protection purposes), who uses a pedometer (on the advice of his wife) to encour- age physical activity, finds himself in serious conflict. Results: ‘Doing age’ via digital health The low readings (represented by short bars on compu- technologies ter-based presentations) on his device appeared defi- The findings reported here are divided into two subsec- cient compared to those of his wife and made Vasil tions corresponding to the digital technologies used by feel both helpless and frustrated. He reacted by resist- the participating elderly persons: (a) wearables and ing, for example, by casting doubt upon accuracy of the health apps in the context of fitness activities; and (b) sensors. home-monitoring technologies for long-term chronic conditions. Each subsection starts out with a brief This wristband means nothing to me. I will not subject introduction of the technical devices and their pre- myself to being coerced by any modern one-size-fits-all scribed usage. The qualitative study design is such defined limits!.. . I cannot imagine that I want to be that the description and analysis of individual partici- controlled by such a device. With this device, in par- pant data provides an illustration of general patterns ticular, so much is merely a claim and not sufficiently found in the overall data. defined (Vasil, para 16). Vasil experienced as coercion the call to action that he Wearables and health apps in the context of was given by the device. In his view, his favourite way fitness activities of passing the time, working on his lathe, was wrongly Sensory self-assessment and optimisation of practices not taken into account. Before using the wearable he were not invented by digital technologies, for example experienced himself as physically active. His activities 55 56 see Legnaro and Zillien. A paradigm shift, for in the craft room gave him positive sensory and emo- example, from diary entries to digital self-assessment tional feedback. Therefore the wearable confuses his results from the fact that sensors and web-based inter- sensory introspection by calling it into question. After faces permit the structural coupling of independently a few weeks of using the wearable, he decided against produced personal data with those that have already continuing. This in turn gave rise to a vehement dispute solidified into norms. Investigations into digital within the family, where Vasil’s removal of the wear- health practices with wearables designed to monitor fit- able was seen as an indication of his unwillingness to ness thus show that the use of digital technologies actively work on his health. In this conflict, the wear- changes subjects’ sensorial self-perceptions; they able was attributed with helping Vasil to overcome encourage users to be less influenced by spontaneous health limitations from which he has been suffering. individual introspection. Sensorimotor functions are In Vasil’s view, his wife’s concern was transformed replaced by an objectification of the body. This results into intimidation and duress in the sociotechnical inter- from the algorithmic processing of sensory-recorded action; he felt bossed around and supervised. By 6 DIGITAL HEALTH contrast, his wife directed her appeals for more exercise extended period of time, there should be no diagnosis to the wearable. In this tension between the two elderly of any significant change. Within the context of the spouses, the wearable assumed the role of a mediator, sociotechnical interactions, therefore, Ingrid’s body but one that undermined privacy and obscured differ- became a factor of mistrust: on the one hand, it was ence in interests. The wearable was supposed to provide seen as being responsible for the social exclusion if it the evidence that Vasil does not move around enough. failed her; on the other, as a result of mistrusting sen- In turn, this was supposed to appeal to his sense of sory introspection, it was no longer possible to experi- obligation, resulting in him increasing his level of phys- ence whether a stress limit had been exceeded. Sensory ical activity. However, the sociotechnical interactions introspection was proven, for Ingrid, to be unreliable. led to an increase in Vasil’s feelings of guilt. At no Instead, the digital display became a warning system in point was it discussed, however, whether his back and an area of uncertainty; a permanent change in average thyroid gland problems may have been caused by life- readings as well as an unexpected increase in readings long physical labour (and this is highly likely) and triggered fear and concern. whether those ailments could be at all alleviated by an increase in physical activity. In the course of the interview, Ingrid identified the Whereas Vasil’s experiments with the pedometer and number 120 as a symbol of health and capability. As the visual graphs of his performance gave rise to conflict the stability of a number now symbolised health, it and guilt and confused his sensory introspection, Ingrid, became a one-dimensional phenomenon that could be an active 72-year-old widow, experienced change in the interpreted as a controllable form of exercise, thus perception of her own body as the result of wearing a making it appear as a product of will and self-disci- heart-rate monitor watch with chest strap. Her socio- pline. Through the use of the digital device, health technical interactions occurred as part of a walking becomes synonymous with guidance by statistical group for senior citizens. This is her report. means. Health was thus turned into something that could be measured rather than experienced. In conse- My heart-rate monitor shows the heart, my heart. It quence, the wearable reassured Ingrid that her exercise shows me what my pulse rate was when I was walking was a health-promoting activity. in the park. That’s very important to me because, if my pulse rate is too high, this is harmful. It can make me ill Ingrid did not choose web-based algorithmic data because it stresses my heart. And I need to handle my processing to interpret her data because of her limited heart with care [laughs]. In the end, I don’t want to end access to web-based interfaces. Instead, she sought an up in a senior citizens’ home and not be master in my analogous exchange with her fellow male and female own house.. .. Marlies Hoffmann [name changed: runners in order to understand her readings. The par- person from the same senior walking group] can’t ticipatory observations showed that this differed from walk with us anymore, since almost three months the example of Vasil. The exchange between Ingrid and ago. I don’t know what that other symbol is ... her group members had a specific character because it I can’t remember. Recently, when I had forgotten to occurred in situ and was entrenched in empathetic social put the chest strap on, I had a completely insecure relationships. First, the comparisons were based on gen- feeling. I wasn’t sure the whole time if I was really eral descriptions of bodily practices and physical well- walking okay. Of course I feel the strain ... even with- being. Stress and worries were cited as reasons for devi- out the strap, but it’s strange without it. I just have to ations in readings in order to explain unexpected pay attention that the numbers stay the same. At my increases. Such explanations in turn made it possible age, if you just once can’t continue, then you never get for the others to be reassured, thus strengthening the back up again. And that happens in old age faster than team spirit. Second, the readings from older people you think (Ingrid, para 3). are generally significantly higher even on average than those in the tables given by standard providers of pulse According to Ingrid’s interpretation, there is a chain of monitors. The senior running group thus generated new equivalence linking high numbers, high pulse rate, average readings on the basis of their own digital damage and social exclusion from the walking group. graphs. Third, individual characteristics were included Social exclusion would result from not being able to in the comparisons: ‘Marlies Hofmann had always been participate in the exercise; in Ingrid’s case, synonymous a hotspur’ was said in the course of the interview, and with the loss of the social contacts she had forged there, her pulse rate generally increased faster than that of as well as losing her independence, culminating in her other runners. This was interpreted by the group as seeing herself eventually being committed to a nursing part of her disposition and thus not as a cause for con- care home. In order to maintain her social integration, cern. (The sociotechnical interactions of elderly subjects the numbers would have to remain stable. Over an are generally more strongly accompanied by an Urban 7 analogous exchange than is envisaged for web 2.0-based driven interactions, elderly subjects tend therefore to sharing of individual data, see Copelton. ) modify the script. Within these sociotechnical interactions, social phe- nomena such as exclusion and the loss of independence I must admit that during the first days, I tended to say are debated. Health itself is viewed from its negative ‘Ok, I’ll bring your tea upstairs’, because that meant end, i.e. physical deterioration. Exclusion resulting going upstairs. And that is 15 steps, equal to 30 points, from the loss of independence and individual effort as there and back. Well I may have said that, but it was the prerequisite for health are naturalised in these meant more as a joke. I really don’t need that. Ok, it is sociotechnical interactions. The primary topic is thus good to stand up more often and then you can exert a bit not physical capability, but the individual’s entry into of influence. My aim right now is to find out how you a low-performance stage of life, i.e. that of frail old age. can fool that thing. And it is possible. You can swing In this context, the body becomes a potential double- your arms, but only in a certain way. You have to find deficit experience. Therefore, despite the fact that out which ones are counted as steps and thus as points. virtualisations can be a source of pride and delight if So, you can sit in comfort, watch TV and just do this readings are stable (as was evident in the interviews), [swinging of arms]. That is quite ok, I tell myself. This and that Ingrid felt that the sociotechnical interactions will also increase my muscles soon, if I continue with had broadened her scope of action  she could affirm that. But you are able to chalk up one or two hundred her physical activity as health-promoting and her body points, just during one TV programme. Or you can get as capable and strong  these virtualisations also trig- up and walk around the room. We have a large sitting gered emotional responses such as worry, anxiety and room, and when I do a round in there, it always adds up fear; and sensory introspection was reduced and to, I don’t know, 40 steps (Dinja, min 16:35ff). replaced by enhancing the visual sense. Thus Ingrid’s sensory reassurances of well-being regressed while These sociotechnical practices integrated into the life- assurances were delegated to the device. style habits of an elderly person deviate from the usual imagery of fitness activities shown in the media or in advertising. As a result, Dinja perceives her way of ‘Ok, I’ll bring your tea upstairs’: Ascriptions of doing health as cheating. To sum this up, in all four ageing patterns, the sociotechnical interactions potentially Four other paradigmatic patterns are expressed in the bear negative self-perception. sociotechnical interactions that correspond to the ascriptions of ageing. First are difficulties associated Home-monitoring of long-term chronic with a lack of digital experience resulting, for example, conditions from age-related personal reservations about and uncertainty or suspicion towards the relatively young Let us now turn to digital health practices for the diag- technologies (compare with Urban ). Second, an ageist nosis and management of long-term chronic conditions, design of wearables can handicap the user. Interviewees such as diabetes, asthma, Parkinson’s and chronic car- described displays as difficult to read or the devices as diac problems, as well as the long-term management of difficult to operate with unsteady fingers (see the other critical conditions. Digital technologies intended remarks by Hilde in the following section) (compare for home illness management are designed less as self- 64 65 with Charness and Czaja and Charness ). Third, a knowledge-enhancing technologies, than they are as repurposing of the digital device scripts was uncovered technologies to enable one or others to monitor and during the interviews and ethnographic observations: assess bodily functions, locations and abilities. The for example, instead of using heart-rate monitor aim of low-threshold, long-term monitoring is, on the watches to improve performance, the dominant motive one hand, to ensure individual autonomy and thus care was to monitor individual accomplishment and bodily and nursing at home. Digital technologies thereby functions in order to maintain ability or to avoid phys- enable elderly impaired individuals to age in place, in ical decline. Using the device in a way other than a non-clinical setting. The aim is meanwhile to substi- intended by the script signifies an inherently experience tute care provided by human carers and/or the use of of deficit by the user (as illustrated, for example, health and social services (at least in part) and thereby 7,68 by Ingrid above). Fourth, reported practices often ease the burden on health care systems. On the other deviate from the commonly used notions of fitness hand these in-place-monitoring practices open the pos- activities using digital technologies that are designed sibility for new data-assisted diagnoses: a new, much for young and middle-aged subjects, like able bodies more detailed patient’s medical history can either help running with wearables and/or training with heart- to adjust medication and/or intervene to prevent rate monitor watches. In the sociotechnical demand- decompensation. 8 DIGITAL HEALTH procedures. Other interviewees also reported having ‘Always all day long, three times a day’: Elderly difficulties in understanding the devices. as diagnostic agents Home-based monitoring technology offers disabled Which bars mean what and how much and from where. subjects (and their families and carers) the option to For example, calorie consumption, I have no idea what identify an emergency on the basis of actual data. that is. Because they can’t monitor my food, so it obvi- Sociotechnical interactions thus help these individuals ously has nothing to do with eating (Helen, min 13:26). to transform uncertainties into the ability to act, as evident in an interview fragment from 76-year-old For Helen, a very lively 70-year old suffering from dia- Selina, who suffers from a heart condition. betes, the current standard combination of apps with other technologies  e.g. insulin pumps, blood sugar I am basically predisposed, because my father died monitors, blood pressure monitors, from heart failure at the age of 60 years. And my Cardiogoniometrie (CGMs) and step counters  con- brother has heart problems, too. My readings were stitutes a particular factor of uncertainty. As a conse- always fantastic, 80 to 120, but that has changed with quence, Helen not only felt controlled, but she also felt age. My blood pressure jumps  sometimes too high, unsure as to how and what data were being generated sometimes too low, rarely normal. And for that reason, as well as what the various visuals were telling her. This it is very important for me to know that, if there is a lack of technical understanding also leads to uncer- real problem, I can call for help (Selina, min 4:09). tainty in the timing of individual measurements and self-regulation. These new demands created tensions Her readings allow Selina to cope with a potentially in Helens life. Her sensory experiences of healthy nutri- hazardous situation. What was subject to sensory intro- tion (e.g. taste) and experiences of physical fitness (e.g. spection before the introduction of the sociotechnical feeling hale and hearty) were confused by digitally pro- practice manifesting itself, in this case, as a metric visu- cessed recommendations. Moreover, the sociotechnical alisation, now appears as an objective presentation of practices forced her to give up habits she had acquired Selina’s state of health. Thus, Selina has reduced her and become fond of over the years, in order to meet the own level of worry and anxiety by replacing sensory affordances of the scripts. She interpreted this as a set- introspection and relying on a digitally produced back of well-proved self-knowledge. numerical image. This method of data processing reas- Another interviewee, the lively 72-year-old Alex with sures the subject by enhancing her own ability to act a migration background, complained of incompatibility and thereby calms her. But such practices are asso- between the sociotechnical practices with the infrastruc- ciated with an increase in the responsibilities of the ture and the routines in his less developed country of subject. The responsibility for assessments previously origin, where he usually spends his summers. done by medical staff is transferred to users in general in this case, Selina  and this new accountability gives At home, we have no internet. And we eat different. It is rise to new anxieties. like a cure for me. But it is all so different, that my medical routines.. . they don’t work out (Alex, min 9:11). So I have been asked to measure my blood pressure from time to time.... I basically always found it quite In some cases not only does the integration of these a strain to measure my blood pressure, because it is practices become a strain for the subject, but also his or often too high. Or it jumps, is irregular.... Always all her daily confrontation with the output from these day long, three times a day, having to measure my sociotechnical interactions. blood pressure makes me nervous. I have simply had to do it, but I feel that it is quite a strain.. ..Iam It really takes it out of you, if you are constantly being basically a little bit afraid of negative consequences reminded of it. But because I am in this programme, (Selina, min 13:02). I have to take a blood sample four times and check.... These are some of the other problems you then have Sociotechnical interactions are often experienced as an (Alex, min 8:33). added strain, and they can trigger anxiety or fear. One of the reasons for this is the necessity for the elderly Previously, diagnosis and discussion of results took subject to become a competent diagnostic agent. The place in a medical setting like the doctor’s office, a elderly are required to become familiar with the digital place separate from a patient’s home environment. media and acquire new skills. However, many of them Home-based self-monitoring reinforces patients’ per- remain insecure in carrying out such practices because manent awareness of their own chronic illness or condi- they really do not completely understand the digital tion when they are at home. Thus physical impairment Urban 9 takes on a greater presence subjectively: sociotechnical A particular differentiation is made between two interactions promote hyper-awareness of one’s physical generations of passive monitoring technology. deficits, especially the weakness and frailties of the body. Whereas first-generation systems  for example, emer- This increased awareness led Alex, for example, to gency call devices  are connected to a call centre that 70,71 experience severe physical discomfort. relays information, second-generation systems monitor spaces in which an emergency call can be triggered without the active involvement of the impaired ‘They are so very tiny’: Enabling, frustration and person; these devices can summon help for an individ- compensation ual in an emergency situation in which he or she may be Another phenomenon that was revealed in the inter- no longer able to place the call themselves. Sensors of views and through the accompanying observations this generation are able to filter out uncommonly rapid was that self-monitoring and the associated self-reliant or unaccustomed movements from routine patterns like reading and evaluation of the recorded data gave rise to opening doors, turning over in bed or walking across new risks, because the subject may not be able to cope the floor, encoding deviant movement as problematic; properly with the devices, the technology or the overall the information is then relayed to web-based 72 75 situation in home-based sociotechnical interactions. interfaces. Hilde, a very cautious lady with multiple impairments, However, the scripts of an ambient monitoring talks about her coping strategies. system do not always correspond to the value systems of the users. Interviewee Hilde, who lives on her own, Butithas takenme two or threedays tolookatit suffers from a pulmonary disorder and uses a first-gen- again.... I’m not really sure what happens when I press eration emergency call system, provides a good illustra- this. And in the beginning, you don’t really have the tion of such a divergence of values. courage.... But these symbols, I don’t know. They are so very tiny.. .. Well, that’s the way it is. I have accepted From time to time, I get coughing fits  have had them that then; that’s the way it is. Micha [her daughter] has for years  that make me panic, because I cannot figured it out; she put it on and kept pressing; I was quite breathe, and fear that... I notice then that there is an horrified.... Of course, yes. I did not want to do anything emptiness developing in my head [and] I am afraid of wrong, you know (Hilde, min 28:53ff). suffocating. In that situation, I have developed a tech- nique in which I pant in order to get more air gradually. Hilde’s coping strategies resulted in her partial inability I am coping with that quite well, and I do not panic any to deal with the demands of the device. The conse- more. But I still consider the situation quite dangerous quence of this could be lack of provision or care and at times. Once I was almost about to press the button. possibly even an incorrect response to the readings. But then I hesitated a bit longer. It would have taken Hilde’s negative emotions and lack of sensory control the ambulance 20 minutes to get to me, but my brain were succeeded by unreliable practices, for which no would have already suffered severe damage in that time. sensory experiences could adequately assist her towards I find that prospect worrying; I’d rather not be there at health-promoting behaviour. all. And by and by, my breathing improved, and I was quite glad that I had not raised an alarm unnecessarily (Hilde, min 16:32). ‘Or whether that appears somewhere’: About scripts, desires and values Whereas the script of the technologies includes the In addition to the active monitoring technology dis- speediest possible intervention and thus the initiation cussed above, which provides real-time responses to of life-saving measures, consequential damage cannot biological changes, other aspects become apparent be ruled out in this way. The technologies subscribe when we consider passive monitoring technology. inherently to an ethic of saving life at any price, Passive monitoring devices are marketed as sensors which may diverge from the users’ notions of a life that gather and analyse domestic behaviour and rou- worth living. In consequence of such conflicting tines over time, so as to alert the user when there is values, Hilde actually preferred to be in a situation of unanticipated deviation. Such monitoring sensors panic and fear of death without sociotechnical inter- are also known as ambient assisted living or smart action. Just by rejecting the use of the digital technol- house technologies. Some examples of these are passive ogy, Hilde stayed true to her values. infrared movement detectors (PIRs), flood detection Other interviewees feared that monitoring may make instruments, fall detectors, bed occupancy sensors, their lifestyle choices public and embarrass them  how bed epilepsy sensors, chair occupancy sensors, electric clean they were, how cluttered their homes were, what usage sensors and door contact sensors. their sexual practices were. In that way, ambient 10 DIGITAL HEALTH monitoring systems could potentially undermine indi- Even though the digital technology was employed fault- vidual privacy. Such concerns were raised, for lessly, the sociotechnical interaction posed problems for instance, by Helen, who uses a bed epilepsy sensor. the user. Whereas for the medical emergency team the alert was over because it was identified as a false alarm, I still want to blow my top and make love. I don’t know Ming suffered from sleep disorders and remained whether I should switch it off then, or whether that unsettled as a result of the incident. She developed ner- appears somewhere. These things happen. And there vous symptoms, induced by acute awareness of her own are other open questions. I don’t know where to get defencelessness and frailty, made apparent through the the answers (Helen, min 15:54). sociotechnical interaction. Active and passive monitoring technologies also, of Sociotechnical interactions thus limit the options for course, expand the scope of action of the elderly; the lifestyle choices and some bodily experiences. Helen interviewees would not have used them otherwise. But was confronted with digital technologies that show little is discussed in the literature about the effects of some bodily activities as deviating from statistically sociotechnical interactions that, at the same time, pro- normal routines. Her sexual behaviour could be inter- voke negative emotions such as anxiety, fear or shame. preted by the device as physical risk and trigger an Further, in such constellations, the senses of the elderly immediate alarm because of the way the algorithm do not provide compensatory information or orienta- works. This built-in element of the device and the tion: rather, the sociotechnical interactions create corresponding sociotechnical interaction actually pre- incompatibilities with spontaneous needs or familiar cludes, then, the subject’s being able to satisfy her practices, whereby these needs and practices are tech- sexual needs. nically marked as deviations. But above all, digitally Other elderly persons spoke of their fear that their recorded deviant behaviour could be taken as indica- privacy would be eroded and that the technology could tors of ageing (e.g. the accumulation of clutter or being result in misjudgement or false assessment by medical overstressed). And, in turn, indicators of ageing could professionals or family members of their state of health be interpreted as signs of the need for intervention e.g. relaying misinformation about falls or other devi- possibly against the will of the persons concerned. ant behaviour. Unwanted alarms triggered by a device can result in increased anxiety and insecurity. An Discussion: Digital ageing and its obligations 84-year old interviewee who lives on her own with a and frustrations first-generation emergency call system talks about an incident that caused her great anxiety. She accidentally As we have seen above, elderly users of digital health pressed the button on her emergency call device  a technologies are being enrolled as active agents in wearable on her wrist  in her sleep. managing their own diagnosis and treatment in non- clinical settings. This responsibilisation is characteristic Of course this happened while I was asleep. And I don’t of health care today with its notion of patient-centred hear very well. I always leave the door to my room medicine and patient empowerment. (Next to this, a open; but next to my bed, there is part of the room growing market delivers technologies as internal and then there is the hallway. The station for the devices, like pacemakers or implant cardioverter defib- device is in the sitting room. And I did not hear it. rillators, which put much less agency upon the users, I did hear the phone ring; but, by then, my ears had see Oudshoorn. ) New digital health technologies for already missed these other sounds. So, I thought that it the management of long-term chronic conditions have was just a prank call in the middle of the night. And enabled the shift from clinical to home care, and with some minutes later my doorbell was ringing and the that a corresponding shift from professional supervi- door to my flat was flung open. I lay wide awake in sion to patient self-help. Thereby, we retrace increasing my bed, full of fear. Of course, I was totally shocked. patient empowerment. Digital health technologies Because I thought that somebody had spied on the allow new ways to experience the body, and new prac- phone to see if I was at home and then made sure at tices and embodiments of ageing. In sociotechnical the door. [Question by the interviewer: Did the person interactions, digital technologies appeal to the trans- introduce himself as a paramedic?] That’s what she formation potential of the individual and raise the claimed! But I did not believe her. I said: ‘I’m fine. hope of extending physical capability and autonomy. I don’t need help... [and] I won’t let you in’. I had In so doing, these technologies address their users as the chain on the door. She said that she could unlock active agents who can perform on their own the chain as she had the key for that, too. She was initiatives. wearing a uniform, but you know that is no evidence To understand how digital technologies enable these days, either (Ming, min 7:54ff). the elderly to become competent diagnostic agents, Urban 11 we should have a closer look at how these technologies they also function as limitations in the form of an work. With their numerical representations of bodily amplifier of a hegemonic ideal of ageing. functions, digital health devices guarantee an appar- In our second case, home-monitoring technology for ently objective assessment of hazardous or potentially long-term chronic conditions, we discovered new chal- hazardous situations: diagnostic logic presents some- lenges that the digital technologies imposed on the eld- thing previously invisible in a visually usable manner. erly. In ordinary face-to-face consultations elderly Digital visualisations as (apparently) objective presen- patients receive diagnoses and advice from medical pro- tations carry a high degree of validity. Technically fessionals whom they have no choice but to trust. generated presentations, graphs and illustrations are (Sarah Maslen presents this in detail, and how doctors interpreted as neutral; they are seen as endowed with use their senses to develop a diagnosis that is therefore ‘mechanical objectivity’. However, these visuals in much more complex than a data-based one; see particular do not reveal anything about what they Maslen. ) But long-term trust-based relationships doesn’t reveal, namely that it is not a verdict about the with professionals usually helped in getting subjects to concrete body at all. Although digital images sup- comply with the therapy. However, there was the inher- posedly process individual data, their reference values ent risk that subjects would misunderstand the instruc- are based on standardised bodies. Medical and tech- tions or disregard them. Home-based self-monitoring nical images conceal the highly complex technical, and the associated self-reliant reading and evaluation social and cultural conditions under which they have of the recorded data gave rise to new risks, because the been created. Their process cycles remain hidden, as technologies have the potential of encouraging do their algorithms, picture-processing software, com- inappropriate responses and rendering individuals parative data and compilation. In particular, it is the attempting to use them unable to properly cope. reaction to such an unquestionable representation of Taking into account other studies, we find similar data that may reduce sensory introspection and respect- results. The IN-TIME pilot study on digital monitor- ively change bodily experiences as well as physical ing in cases of chronic heart failure shows, for exam- practices. ple, how, under consideration of a patient’s medical Let us first have a look at what this means in our history, monitoring can trigger interventions  ranging first case, the sociotechnical interactions with wear- from adjustments in medication to calling for emer- ables and health apps in the context of fitness activ- gency help  once any abnormalities have been ities. The interview fragments above show the extent detected. The interface to a telemedicine centre not to which sociotechnical interactions interweave the only prevented decompensation, it also made it pos- technical with the corporeal. For our elderly subjects sible for users to enjoy greater mobility. Another (similar to the way in which the technology works for qualitative study from the Netherlands on self- persons in other stages of life), the digital practices monitoring of blood glucose (SMBG), including enable enhancement of processual materiality, sensory self-regulation, showed that many patients measured experiences and emotions. But encoded into these their glucose concentrations less often than recom- digital interactions is a morality that encourages spe- mended. Many participants in that study did not cific practices, and stimulates certain sensory and emo- know how to respond correctly to the glucose readings tional experiences of elderly subjects within the actual and, in consequence, often maintained poor glycaemic networks into which they and the digital devices are control. incorporated. In this sense, digital technologies func- The interview fragments above show that the gap tion less as neutral fitness coaches because the digital between the technology scripts  and, by implication, fitness practices of the elderly are rooted instead in the the demands, perceptions and goals of the professionals ‘plasticity perspective of age and ageing’ and originate  and the adaptations of these technologies in the from the primacy of ‘age prevention’ (compare with everyday lives of elderly users leads to tensions. In Denninger et al. ) The implication here is that ageing turn, these tensions can have a negative impact on qual- is something that has to be prevented, or at least ity of life and an individual’s own choices. In addition, delayed. Thus, in accordance with sociotechnical prac- digital health technologies must be integrated into tices, ageing is to be interpreted as a personal decision normal daily routines (compare with Webster89). or rather something controllable. The potential conse- Often this process enjoys only limited success because quences of an elderly person’s failing in these efforts the elderly  as seen in the case of some interviewees can be loss of social recognition and/or social exclu- stick to their familiar and long-practiced routines, even sion. This prescription provoked anxiety and uncer- if and when they prove to be incompatible with the tainty among our subjects, or their rejection of the technical device scripts. Changes of location or to rou- technology. So, although on one hand the digital tech- tines are seen as difficult or divisive, creating additional nologies function as facilitators, on the other hand uncertainties. 12 DIGITAL HEALTH Questions have been raised in the literature about the Whereas, in general, national public health pro- ethical implications of ambient monitoring systems as grammes see technical upgrades of home-based moni- surveillance technologies. For example, as we have toring technology as a societal task and millions of seen above, users fear that monitoring may reveal to Euros are spent on interventions, the emotional and others their personal practices (e.g. sexual expression), sensory experiences due to digital practices remain habits or lifestyle choices, that they would prefer not to mostly neglected. The potential of these digital prac- be publically known. In other words, ambient monitor- tices to motivate older persons is thus approached as a ing systems were seen as something invasive, which could purely technical challenge. On that account, systemic potentially undermine their privacy. As a result inter- dysfunctions are generally perceived to be individual viewees felt that limits had been imposed on their lifestyle personal malfunction(s) or failure, which requires, choices or their emotional and sensory experiences therefore, a private solution (or perhaps improvements through technological intervention. This happens in the way that the technology is applied). Negative because passive and active monitoring technologies emotions experienced during the sociotechnical inter- function as subsystems of risk estimations, whereby digi- actions thus appear as being symptomatic of old age. tal systems function by identifying deviations from stat- Physical discomfort and mental distress, special istically determined normal routines. Risks could be demands and anxiety are thereby separated from the indicated by the length of time spent out of bed or outside scripts of digital technologies. of the house during designated sleeping periods. These For the elderly to carry out such home-based moni- digital technologies are programmed for risk evaluation toring, as our examples show, it is essential that the by professionals and service providers, whose task it also digital health practices are linked to other e-health fea- is to minimise any determined risks. For the very tures such as medical and technical supervision and reason that they are risk assessment tools, these socio- support. Self-monitoring can only work with add- technical interactions generate incompatibilities with the itional hands-on medical support and professional spontaneous needs, desires or familiar practices of users. back-up. The development of additional digital inter- In ambiguous cases, strict application of such risk assess- faces such as electronic patient records, other networks ment tools could result in loss of autonomy, independ- and digital interfaces is a vital requirement in conse- ence and self-determination for an impaired person. quence of self-monitoring. The lack of such compo- Some elderly individuals therefore took a very ambiva- nents of the health care systems can evoke serious lent stance towards assistive technologies because they sources of error and additional strain on the elderly. tended to highlight failure or decline, symbolising Finally, let us summarize the main results in direct age-related frailty and helplessness, the absence of self- relation to the three questions presented at the begin- sufficiency and subsequent dependency (including ning of this paper. To answer the first question, on how dependency on such technologies). the technologies generate (health) practices, we now can identify two aspects. First, an increasing demand for such sociotechnical interactions arises from the hege- 5. Conclusions monic value system that regards successful ageing as Giving the current move in medicine and public health the product of active, healthy and autonomous elderly towards digital health technologies, we are dealing with persons as diagnostic agents. Digital health practices in a new form of guidance for older individuals. In terms of the battle against ageing thus become the obvious a neo-liberal activational imperative, the state no longer answer to this invocation of the individual as a ‘pre- guarantees service provisions but offers help towards ventive actor’. The sociotechnical interactions turn self-help, conditional upon an individual’s personal into a perpetual preventive action loop. Second, the input. If this successful ageing fails at any stage, the sociotechnical interactions reconfigure the concept of failure is attributed to the elderly individual  whose ageing. Inherent in digital health technologies is the options for compensatory action are, to a greater or notion of ageing as a pathological process that could lesser extent, limited. Such an activational imperative be overcome or should at least be the responsibility of fails to consider a disparate distribution of physical, eco- the individual. In that way, digital technologies con- nomic, social and educational resources; instead, sub- front users with the necessity to compensate by them- jects naturalise the notion of self-governance, for selves for their deviation from some predefined ideals. example via their digital health practices: In sociotech- Now, let us recall our second question about the nical interactions, individual efforts become meaningful kind of senses and emotions described in these socio- and necessary precisely because they are motivated by technical interactions. In sum we can say that, whereas individual notions of successful ageing, even though the the enabling of autonomy and/or physical fitness, so-called health-promoting practices invariably proceed for example, are celebrated as consequences of digital with negative emotions such as fear, shame and anxiety. health technologies (compare with, for example, PWC ) Urban 13 2020. Le nume´ rique au service de la modernization et de negative emotions displayed by our elderly interviewees l‘efficience du syte` me de sante´ . Report no. 1, Ministe` re were treated as personal predicaments. In addition, the des Affaires sociales et de la Sante´ , 5, Paris, July (2016). data showed that vision was considered the most cru- 2. Bundesgesundheitsministerium. Gesetz fu¨r sichere digitale cial sense in those assemblages. We also saw that, kommunikation und anwendung im gesundheitswesen sowie whereas certain technologies designed especially for zur a¨nderung weiterer gesetze. Bundesgesetzblatt the elderly appeal to other senses  mostly that of hear- Jahrgang (2015) Teil I. Report no. 54, Eigenverlag, ing  even this might not yield the anticipated results, Bonn, December (2015). as Ming aptly demonstrated. Digital health practices by 3. Bammann K, Baygin E, Drell C, et al. Development of a elderly users, especially persons with age-related visual community based promotion of outdoor activity for eld- or hearing impairments, carry the inherent danger of erly 65þ (OUTDOOR ACTIVE). Institute for Public triggering problematic sociotechnical interactions. Health and Nursing, Bremen/Germany, http://www.ipp. Finally, to address our third question on the role of uni-bremen.de/forschung/ag-epidemiologie-des-demogra- phischen-wandels/projekte/?proj¼443 (2017, accessed 27 the senses in sociotechnical practices, we can conclude December (2016)). that senses other than seeing and hearing appear unre- 4. Price Waterhouse Coopers (PWC). Emerging mHealth: liable or inadequate (as best illustrated by Ingrid). This Paths for growth. A global research study about the coincides with the state of research on the general con- opportunities and challenges of mobile health from the sequences of digital self-monitoring. With regard to perspective of patients, payers and providers, www.pwc. the interviewed elderly subjects, the data emphasised com/global-health (2012, accessed 27 December (2016)). that this shift could stimulate stress and even anxiety. 5. Universita¨ tsklinikum Freiburg. Gesundheits- und versor- In keeping with anthropologist Elizabeth Hsu’s conten- gungs-apps. Hintergru¨nde zu deren entwicklung und ein- tion that senses are mediators ‘between meaning and satz. 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Journal

Digital healthPubmed Central

Published: Apr 12, 2017

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