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4th International ProPEL Conference – University of Technology Sydney 9-11 December 2019

“There is no wire between them” - cross-sector telecare as fitting different ideas of ‘good’

Niels Christian Mossfeldt Nickelsen & Stine Rath Hansen, School of Education, Aarhus University, [email protected]

This is a draft, in development for publication. Please do not cite without prior written permission from the authors

Abstract

Citizens suffering from COPD, diabetes or dementia need hospital services, services from GPs, and municipal health services. Thus, they are exposed to complex care pathways and many different healthcare professionals. Drawing on symbolic interactionism and science and technology studies (STS) this chapter scrutinizes ethics in telecare services for vulnerable citizens. The chapter discusses good care pathways based on 16 interviews, observations, photos, logbooks and discussions at a workshop. Three professional groups’ and a group of COPD patients’ ideas of good care pathways are discussed. The analysis is founded on the symbolic interactionist notion of reflexism (Mead, 1967). That is, the process where participants make their joint lines of conduct an object of attention. In terms of this, the method and notion of empirical ethics (Pols, 2015, 2016) is drawn upon to explore how not only different groups of people but also measurements and devices are actively involved in creating as well as hampering collaboration across sectors. That is, the aim of this chapter is to discuss the implication of different values and accountability and make visible how different professional actors seek to fit their lines of action as different ways of seeking good.

Digitalization of health - national rollout of telecare for vulnerable citizens

People live longer and a growing number of people suffer from chronic illness that justify use of healthcare technology at home. As such, technology is increasingly ingrained in people's everyday lives and become co-constitutive for attempts to maintain a good life. It is these new, expansive and rapidly growing functions for healthcare technology, and the question of their ethical and social implications, that we explore in this chapter. We take a closer look at cross sector development of collaborative practices among municipal health centres, outpatient lung medical clinics at hospitals and GPs in relation to telecare services for citizens suffering from chronic obstructive pulmonary disorder (COPD). Notions such as telehealth, telemedicine and telecare point to activities intended to support citizens on a distance. Typically, citizens record measurements at home that professionals monitor elsewhere. Telehealth is the most inclusive term, used to refer to all such activities, while telemedicine implies treatment. Since avoidance of hospital readmission is the primary goal in the studied case, however, this chapter uses the notions of telecare and telemonitoring.

The analysis refers to the growing body of evidence suggesting that healthcare services include technology on a completely different scale than before (Ballegaard, 2011). The

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target groups are much broader and the endeavour is not only clinical and educational, but clearly also political and economic - a circumstance that undoubtedly complicate things. Healthcare embraces increasingly technologies introduced to ease, reorganize or streamline a specific task; for instance, measurements and device in telecare (Oudshoorn, 2011). When appropriate, such technologies may constitute powerful tools for self-surveillance, education, and self-reliance. Whereas assistive technologies (aids) have been around for decades, including wheelchairs, walking frames and reading lamps, for the past ten years, the Western world has seen the trope of digitalization of health (Lupton, 2014). Particularly in the Scandinavian countries, government agencies explicitly promote ‘welfare technologies’ to reduce costs and to improve quality (Hansen & Grosen, 2019). Interestingly, the notion of welfare technologies allows for technologies that are not simply instrumental, but embrace warm and caring relations between people and technology. Thus, digitalization of health potentially launches a myriad of opportunities and even seems to absorb traditional aid delivery. As such, assistive technologies (aids) and digitalization of health (welfare technologies) constitute related, yet different developments (Moser & Thygesen, 2014). It has been argued that telecare has the potential to transform our institutions and make expertise more accessible to citizens (Susskind & Susskind, 2015). However, this involves time demanding cross-sector collaboration among busy healthcare providers and it is the practical challenges associated with this collaboration that we take up as a matter of learning in this chapter.

Fitting lines of conduct as reflexive process

Particularly due to the work of Susan Leigh Star (Bowker & Star, 1999; Clarke & Star, 2008; Star, 1999) symbolic interactionism, during the last 20 years, has had great influence in STS of healthcare. However, classic symbolic interactionism also has an important contribution to digitalization of healthcare. Blumer argues that technologies (objects) are constituted through the meaning they have for those they are objects of (Blumer, 2005). That is, objects arise out of the way persons interact with them and take shape in interaction. This is interesting in relation to telecare because measurements send from home by way of an app mediate healthcare in new ways and the big question is then what this does to meaning making and healthcare practice. Blumer has three theses for meaning making. 1. People relate to their surroundings on the background of the meaning that the outside world has to them 2. This meaning is created through social interaction 3. The social interaction is a continuous reinterpretation of meaning (Hviid Jacobsen, Jørgensen, & Kristiansen, 2014). As such, according to symbolic interactionists the reflexive process alone constitutes the self (Mead, 1967). That is, the implicated self is placed in a symbolic interpretative position vis-à-vis the world instead of merely in the world. That is, the human agent pieces action together by way of interpretation of the situation and joint action is constructed to cope with the world by way of fitting together lines of conduct (Blumer, 2005). Thus, according to symbolic interactionism, collaborative practice across sectors is a positive creation and extension of conduct by way of constant mutual interpretation of ongoing activities. This is a useful theoretical ramification of discussions at a workshop focusing on different values and practices in relation to ways of seeking the good life for the vulnerable citizen among healthcare professionals deriving from different sectoral institutions.

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Ethics, values and the good life

The research field of medical ethics is engaged in articulating universal moral claims (Hope, 2004). It’s main objective is to formulate rules, to regulate care and ensure optimal healthcare services (Good, 1994). In the eighties, the feminist/constructivist critique allotted attention to context, relationships, narratives, responsibility and particularity in moral thinking related to healthcare services (Gilligan, 1983). This perspective obtained great influence. Later a group of science and technology studies (STS) scholars proposed a budding of this critique. Drawing on applied ethics, pragmatism and actor network theory, they developed what has later been termed multiplicity studies (Law & Hassard, 1999). This can be read as an extension and innovation of the ethical perspective in feminist studies (Mol, 2002, 2008). From the philosophical standpoint that care providers and vulnerable citizens are relational entities and that care is aimed at mitigating the risks of those cared for, Pols (Pols, 2015) and Pols, Pasveer & Willems (Pols, Pasveer, & Willems, 2017) develop ‘empirical ethics’ as a relational engagement (and a research practice) inclined to find various ways of seeking ‘good’. That is, empirical ethics is the study of values emerging in practice. Instead of adding universal normative claims or adding context, responsibility and particularity, empirical ethics is concerned with strivings for good. That is, empirical ethics examine multiple interacting normative claims emerging in practice.

The notion of ‘the good life’ of course needs more clarification. The good life for the citizen involved in cross sector telecare is undoubtedly a result of what the technologies do to their relations to their carers. For instance, how are roles and contact transformed? Thus, ‘the good life’ relates to the adaptation and tinkering with devices. In relation to ongoing meaning making, there is a risk to stereotype claims about what is good from the perspective of vulnerable citizens and three groups of healthcare professionals. In the following, based on the workshop, ‘the good life’ refers to what the citizens and the three groups of health professionals value as good care pathways. I will later discuss how this relates to accountability.

The notion of in-action ethics can elucidate emerging collaborative practices? Recently a growing body of evidence is suggesting that practitioners are linking anticipatory ethics with care practice (Frauenberger, Rauhala, & Fitzpatrick, 2017). Healthcare professionals (and citizens) are in other words struggling with ethical questions while doing their work. The notion of in-action ethics draws among other things on the well-known educational idea of ‘the reflective practitioner’. Here, the practitioner learns from the complexity of situations by interacting with the world (Schön, 1983). The concept of in-action ethics involves ethical reflections in practice and opens the possibility that not only researchers identify values and ethics in their fields of study; also, practitioners learn about values and ethics while ddoing their jobs. The notion of in-action ethics is inspiring in this chapter in terms of inviting care providers from different sectors to reflect on a workshop on what is after all good telecare pathways, what is valueable and how do they participate. This fits well with the symbolic interactionist idea that others implicate selves and that joint action takes form by fitting different lines of action. I will return to that.

Studying technologies, professionals, users and cross-sector interaction

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Woolgar proposes that we can address some problems in our understanding of technology and innovation by thinking of technology as an integrated part of applied social science. To explore this, he proposes the notion of 'technography' (Woolgar, 1998). This relates to an anti-essentialist stance that goes beyond the idea that people and things live in separate worlds. That is, for the anti-essentialist, the blurred boundaries between the social and the technical is an important part of the phenomenon to study (Grint & Woolgar, 1997). This is undoubtedly important in a situation where technology increasingly has a crucial role in care work. However, in order to offer telecare services, new standards, routines, referral practices and monitoring are needed. As such, employing technography i.e. to describe the technology in use opens up crucial lines of inquiry: What can the technology do? How varied are its actual uses? What are the limits? Since particular values based on designers’ more or less well-documented knowledge of the user are inscribed into the technologies, there are always something that does not fit into the plans (Oudshoorn, 2003). Users often employ technologies in radically different ways than envisaged in the design process. Akrich argues that technologies are composite and heterogeneous. Although they point to a certain use for which they have been conceived, technologies are products of various forces, of compromise, and embody a set of relations (Akrich, 1992). Thus, technologies are part of a long chain of people, ideas, tools, materials, laws and money. Technologies come with a specific problematization of the world, a script and notion of the correct use and the technology itself is presented as the solution. As such, the technographic approach is useful for investigating tensions, misunderstandings and links across sectors in the appropriation phases. It is therefore necessary to be attentive to the actual journey of telecare into the worlds of the users, which in this case means observing how citizens and care providers after all use measurements, screens and apps and the effects this has. Surely, the most basic question is how vulnerable citizens actually embrace telecare and how this does or does not depart from, and innovate, in their intended applications. Not least, the crucial question is how the telecare user is made to relate to the three sectors and what this implies in terms of care pathways and the good life for the citizen.

Methods

The empirical focus of this chapter is the ongoing and mandatory national rollout of COPD telemonitoring in Denmark as a collaboration among GPs, municipalities and hospitals. This is to be fully implemented in 2020 and raises a number of questions: How are routines developed across sectors? How does emerging cross-sector telecare affect care and vulnerable citizens’ everyday lives? How are roles and contact transformed? Which ideas of good emerge in various groups of healthcare professionals? These questions refer to the national digitalization strategy (Digitaliseringsstyrelsen, 2016), as well as to the guidelines developed by an expert group on telemedicine routines (Sundhedsstyrelsen, 2017b). Not least, these questions relate to the National Research Council grant “The infrastructure of telecare” (INSIST)” in relation to which the first author is the PI. In relation to INSIST we are currently involved in a research collaboration with Region Southern Denmark and Esbjerg Municipality, a rural Danish municipality.

The method used in this chapter is analysis of presentations and discussions at a workshop in November 2019. Telemonitored citizens suffering from COPD (4), GPs (4) and health professionals from the local Lung Medical Clinic (2) and from a large municipal health centre

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participated (6). There were 16 participants. To open up discussions, all the participants were individually interviewed before the workshop. We used a semi-structured model to reach out for the informants ideas of cross-sector interaction that supported the good life for the citizens. A research assistant transcribed all interviews verbatim. As a preparation for the workshop, the participants were instructed to take three pictures of what they believe to be good care involving cross sector interaction. Moreover, they were instructed to take notes in a logbook in relation to the three pictures. The workshop took place at a health centre in Esbjerg and took 3 hours. One by one, the participants presented their pictures and ideas of good cross-sector interactions. Before the workshop, the first author collected the logbooks and prepared a PowerPoint presentation with all the pictures that was presented during the workshop.

Expert recommendation: A coherent healthcare sector?In 2017, the National Board of Health set up an expert group to make recommendations for telemedicine for citizens with COPD. The report states there is a lack of secure knowledge about which patients benefit from telemedicine, what types of telemedicine services work and what preferences the patients have. However, the report states, there is an indication that telemedicine is leading to better quality of life and that more research is needed to clarify these uncertain conditions. The purpose of the national roll-out of telecare is,

“The purpose of the national dissemination of telemedicine to support the treatment of COPD is to contribute to potential positive effects of both health and socio-economic character. It is about the individual citizen with COPD struggling and acting on their own symptoms in order to achieve increased quality of life, satisfaction and security and consequently fewer or shorter consultations, admissions and re-admissions” (Sundhedsstyrelsen, 2017a)

The report provides specific recommendations for target group, health professional content, responsibility and collaboration. Among other things, the expert group proposes good examples of division of work between GPs, municipal health centres and hospital clinics. The recommendations indeed circle around spotting and dealing with inflammation at an early stage to avoid expensive hospitalization. According to the gold standard stratification, the report states the telecare service is relevant for citizens in the D category (the most ill). The expert group moreover states that GPs ought to be the ones that refer to the municipal telemonitoring service after setting alarm limits etc. in collaboration with the health centre nurse. At the health centre, the telecare nurse receives measurements from the citizen. The citizen sends measurement of oxygen saturation, heart rate; weight and symptom score, i.e. answers to questions about the color and nature of saliva. After a few weeks, measurements ought to be evaluated in a collaboration between the health centre nurse and the GP (ibid p 11). The report emphasizes that telecare should also be a service for the most ill patients in the hospital clinic (ibid p 16). In sum, the report accounts optimistically for a coherent healthcare system deliberately collaborating across sectors in the interest of the citizen. Unfortunately, however, this approach is not well in accordance with actual cross-sector care interaction. Moreover, it is clear that the report subscribes to values in relation to a liberal person's view (citizens acting on their own symptoms) as well as to a cost reduction agenda (fewer readmissions). I will discuss this in more detail in the next section.

What do different parties account for?

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Accountability in healthcare means that the care provider bases practice on the best knowledge from clinical research - a gold standard, rather than on for instance professional discretion and/or learned routines/traditions. However, care providers may also be accountable in relation to economic target numbers and other control parameters. That is, understanding accountability is to get insight into what the care providers account for and what idea of good they seek through their practice? Based on a comprehensive ethnographic study, Wiener (2000) proposes that there is not only a mismatch between the quality of care and its representations in accountability indicators; she argues that ‘accountability work’ diverts time, energy and resources otherwise used in care. Thus, she not only challenges the validity of accountability measures, she also suggests that care work is jeopardized by accountability. Whereas Wiener's argument is obviously of a political nature, Mol looks a bit differently at the question of accountability. Mol (2006) also problematizes the assumption of accountability as a gold standard of care. The problem is, she claims, that care is assessed and valued in relation to ambitions to define and measure care outside care itself. There is no singular, shared form of health to strive for, she proposes. Instead, she suggests, to look for ‘multiple care’ as it is practiced in clinical work. So, instead of Wiener’s idea that accountability parameters make care providers spend their time erroneously, like Mol, we are concerned with how care work takes various forms dependents on what care providers account on. So, rather than Wieners idea of accountability as standards of good care defined outside care. We are interested in how visions, division of work, technology and money co-define what care providers account for. In other words, accountability do not necessarily take the shape of formal standards, but may be immediately invisible but dominant structures of care. This is what we talk about as ideas of good.

Ideas of good in different locations

Citizens suffering from COPD need services from GPs, from municipal health centres and from hospitals. Thus, they meet many different healthcare professionals i.e. they face complex care pathways. A care pathway is a multidisciplinary healthcare tool based on healthcare plans for a specific group of patients with a more or less predictable clinical course. Telecare pathways for citizens suffering from COPD are currently in the making i.e. they are in an early development stage. Based on the workshop we will now discuss different claims and emerging practices that is believed to lead to the good life for citizens suffering from COPD; 1. Telecare as safe and continuing contact 2. Telecare as interruption of good care 3. Self-treatment rather than telecare.

Telecare as safe and continuing contact In principle, the inclusion criteria are narrow; however, in practice they are loose and pragmatic. A nurse at the health centre explains this in an interview,

“We do not worry so much about how bad the citizens are, if only they themselves think there is a need for telemonitoring….we just end them a little faster if they have almost no symptoms”.

In fact, Esbjerg municipality is willing to include all citizens in the telecare service. There, are two important conditions, however. The citizens need to suffer from COPD (have a

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diagnosis) and they need to have their address in Esbjerg (RegionSyddanmark, 2018). Moreover, the unique feature of the Esbjerg model is the division of citizens into two groups. 1. The self-monitoring group is invited to download the telecare app and monitor themselves as often they like. The assumption is that much can be learned from systematically collecting data about your on lung function. Everybody can download the app and monitor himself or herself. Based on an agreement with the municipality the citizens may shift between the two groups as they like. 2. The second group is involved in rehabilitation. This means they are invited to send measurements directly to the telecare nurse at the health centre 1-2 times a week. She will then monitor the figures and talk with the citizen about them on a regular basis. Two hundred group 2 citizens are monitored every week in the municipality. Open Telehealth (OTH) is the platform by way of which the health professionals communicate with citizens. This is predominantly done by text messages and phone (not by video). At home, the citizen measures oxygen saturation and heart rate with a small appliance (see photo 3). Together with responses to three questions in relation to cough and mucus, the measurements are transmitted to the health centre. The citizen also sends his/her weight. Changed color or texture of mucus appears to be the single most important indication of future deterioration of the condition.

The telecare service is founded on ‘Bring Your Own Device’ (BYOD). This means the citizens download (or get help to download) the municipality’s app on their own tablet or smartphone. By using the citizens own device, the municipality abide the data legislation. Currently, data is only transferred from the citizens’ device to the health centre. Due to the EU Personal Data Regulation (GDPR), no data is further transferred to the GP or to the hospital. However, by bringing their own device the citizen can share his/her data with the GP and with the clinic. There are two interfaces. One for citizens at their phone or tablet. This interface circles around doing measurements and sending measurements and provides general information about COPD (see photo 1 and 2). The other interface is for nurses in the health centre. If a green bell appears on the nurse’s screen everything is fine. If a blue bell appears, the citizen has forgotten to submit measurements. If a red bell appears, there is a mismatch between the current measurements and the citizen’s former measurements. In that case, the nurse will immediately call the citizen. A red bell may indicate an impaired condition or a measurement error. Based on the figures the nurse will give advice. Thus, the nurse (and the citizen) can keep track of changes in figures over a course of time on a graph. Particularly changes in the cough and the color and quality of the mucus triggers a red bell. The nurses at the healthcare centre finds this set-up simple, relevant and safe for vulnerable citizens.

A pioneering atmosphere characterizes the municipality. The nurses even seem to see themselves as the vanguard. They explain they provide a safe and continuing contact to the citizens. Citizens also praise telecare, not least the fact that they have fast, relevant and continued contact to the same nurse. Often, COPD patients are anxious of not being able to breathe - even of dying. Having continual contact with the same nurse is valuable they explain. One of our informants a 65 year old woman with COPD tells without enthusiasm about having the quarterly lung function measurement at her ignorant GP. Unimpressed, she continues to talk about her participation in a research project at the Lung Medical Clinic focused on giving overweight COPD patients diabetes medication to lose weight. Meanwhile, when she lastly talks about telemonitoring she lights up,

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“It is really reassuring to be part of telemonitoring at the health centre. If my blood pressure is low one day, the nurse is on the phone right away. How are you feeling? It's a reassurance. There is an eye on you. I like that. My husband says it is reassuring to both of us”.

She ends by explaining that, “there is no wire between them”. This analogy is illustrative in relation to how citizens experience to be exposed to care across sectors. That is, the sectors do each their thing, but it is “unwired”, they are hardly connected.

The municipality is in the front among other things because the Municipal Director of Health as an official is involved in both the national rollout and the regional policy discussions. A health centre nurse explains, “we have a director who very much wants this, who believes in it and wants us to be here first. This is something you should want - and it costs. There are some costs when you really want to try something new”. Here again we see the pioneering atmosphere that surrounds telemonitoring in the municipality. This atmosphere relates interestingly with accountability. According to the organization of the Danish universal healthcare system and the DRG system, the municipality is required to pay up to one third of the bill when citizens are admitted to regional hospitals. There is no doubt, the municipalities have a strong incentive to prevent patients from hospitalization and thus to detect inflammation among citizens suffering from COPD at the earliest possible time. That is, we argue, expenses in relation to admission of citizens to hospitals are an important element in understanding the municipality's strong motivation to build up telecare services.

Photo 1. App user interface, information. Photo 2. App user interface, measurements Photo 3. Appliance for measuring oxygen saturation at home

Telecare as interruption of good care

Esbjerg Municipality is in Southwestern Denmark and since it is difficult to recruit GPs in this area, they each have no less than 1700 patients each. Not surprisingly, this means they are busy. This became evident for us when we tried to get access to them as informants in our research project. For instance, you cannot simply call a GP without identifying yourself as a patient. In addition, many of them, but not all, have websites. However, most often their

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email address is not public. In addition, even if you show up in their practice in person, you cannot expect to talk with anybody. They have a waiting room full of patients and patients always have first priority. One of our informants has had his practice for 40 years. He explains,

“I take care of my patients while my wife takes care of me (she is also his secretary). My clinic is open for consultation every day from 10 am to 2.30 pm. Patients themselves decide if it is worth the trouble waiting or whether it is better to show up later. Many of the younger GPs have secretaries in relation to whom the patients need to book a consultation slot and since many of the young GPs want to go home at 4 pm everything gets very compressed”.

That is surely also the impression you get when trying to get access to GPs as informants. In relation to citizens suffering from COPD, the GPs generally follow the accredited DSAM stratification of gold standard A, B, C and D (see photos 4 and 5). This stratification proposes medication, advice and intervention in relation to each of these groups. At the same time, it constitutes a simple but relevant organization of work between GPs and clinics. Whereas the clinics at the hospitals take care of gold standard D (the most ill), the GP’s meet gold standard A, B and C in their practice. This division of labor is the result of an agreement between the doctors union (PLO) and The Confederation of Danish Hospitals. In general, the GPs’ service in relation to the citizens in categories A, B and C are one or more yearly lung function checks. Beyond that they are welcome to visit the GP as often they like. It is evident that seeing your doctor for a yearly check is indeed different from sending in measurements to the health centre every week and have continuous contact with a well-known nurse.

Photo 4 and 5 COPD gold standard A, B, C, D

All services in relation to the GPs’ patients are reimbursed in relation to a detailed fee agreement concluded between the municipality and the physicians union. In other words, the Danish universal health system embraces that GPs, in a way, are private business owners whereas all their patients are provided and paid for by the municipality. This

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organization of their work comprises that the GPs are assigned a number of tasks, among other things in connection with chronic patients, which they during our interviews explain they find unsatisfactory. In negotiations, PLO (the GPs’ union) has for instance recently accepted a chronicle grant from the authorities. This means that GPs receive an annual benefit for chronically ill persons with diabetes, dementia or COPD no matter how little or how much they do for this patient. According to the GPs, this is not exactly an incentive for doctors to engage more in telecare and other activities aimed at chronic patients. In addition, PLO has recently made an agreement on behalf of all GPs in Denmark that COPD action plans in relation to every citizen having this diagnosis is to be implemented as an independent intervention. As far as we understand, it is unclear to all our informants what exactly these action plans comprise and also how the action plans relate to telecare. Action plans and telecare are not the same, nevertheless, they are politically decided and implemented almost simultaneously. The GPs find it annoying and confusing that they are uncoordinated. These agreements are as mentioned ‘negotiated’ but the GPs talk about them as forced on them. They see it as if they have no ‘veto’. It is evident that such decisions do not exactly act as motivators for doctors' desire to engage in COPD patients.

Two of our interview informants fear that telecare is in danger of disrupting an existing and functioning practice that according to the GPs is sufficient (gold standard). However, at the workshop the participants discuss that citizens suffering from COPD are very diverse. Some of the patients are suffering very much and often show up at the GP. Others hide and are embarrassed. This is because COPD is a socially stigmatized diagnosis. COPD diagnosed citizens often feel the disease is self-inflicted for instance because they have not been able to stop smoking. This relates to the question of how the health centre recruits citizens for telecare. If the citizens are not admitted to telemonitoring from the GPs, how do the health centres get into contact the citizens they telemonitor? In relation to follow this closer, the doctors regret they are not more clearly involved in recruitment practices. Currently, they explain at the workshop they do not know what their patients do at the health centre. The GPs often admit their patients to COPD-rehabilitation; however, due to internal municipal referral practices, some of them are further admitted to telemonitoring without the GPs being informed about it. Thus, the GPs do not know what kind of rehabilitation their patients’ receive. Some GPs even express discomfort that their patients are taken out of their hands. Others see this as a support.

In regards to citizens that may come to the GP with their COPD data history on a tablet, the GPs explain they will mostly not have the time to get into these data and indeed not to assess its implications. This is because the consultation may be estimated in advance at 10 minutes and thus there will be no time for an app that you may not recognize from time to time. Thus, you have to start from scratch every time. Therefore, what do doctors see themselves as responsible for and what do they strive for as good treatment. First, it is clear they would like to do something for all their many patients. It is also clear that in relation to gold standard A, B, C and D they find relevant task sharing and instructions. Compared to finding themselves in a well-functioning practice, it is frustrating that orders come from above. The chronicle supplement in particular seems to be demotivating and it is clear that several simultaneous and non-coordinated initiatives such as telecare and COPD progress plans are demotivating.

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Self-treatment rather than telecareIn relation to an interview at the Lung medical clinic at the local hospital, one of the doctors says,

“Selected literature shows that at present, there is no safe knowledge about which patients benefit from telemedicine, what types of telemedicine services work and what preferences the patients have. However, a number of studies show significant improvement in quality of life in the telemedicine-supported treatment group compared to the control group. Telemedicine treatment cannot be ruled out, but more research is needed” (interview with doctor at clinic)

This doctor who is the specialist physician in charge believes telecare may very well be an important safety factor for vulnerable COPD patients. However, documentation is still lacking that telemonitoring after all reduces the risk of re-hospitalization. Thus, at the clinic he explains they are afraid that telemonitoring ends up as a waste of patients’ time. Although the national roll-out plan and guidelines proposes that clinics ought to monitor gold standard D patients, they do not do it at the lung medical clinic at this hospital (Sundhedsstyrelsen, 2017a). As an alternative to telemonitoring, the clinic has started experiments and collaboration projects with self-treatment in several local municipalities. As part of self-treatment, Antibiotic and prednisolone are prescribed in advance by the doctor and are ready in the citizens’ homes. Thus, the treatment can then be initiated in a collaboration between a nurse visiting the patient at home and the citizen. This is currently practiced in collaboration between the clinic and several municipalities. According to the health professionals at the clinic it is a matter of getting the treatment started as quickly as possible after the first signs of inflammation. According to the doctors the question is , is telemonitoring or self-treatment the quickest way to prevent further inflammation. There is no doubt that the doctors at the clinic find telemonitoring to be a monstrous set-up in relation to relatively simple aim of reacting as quickly as possible in case of an early inflammation and initiate treatment immediately to avoid hospitalization.

NIW apparater

Discussion

Tydeliggøre accountability and what they strive at as good og tydeliggøre hvad det er for forhold der star I vejen for at de kan samarbejde på tværs af sektorer.

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