The making of self-monitoring asthma-patients - Mending a split reality with comparative ethnography

Henriette Langstrup University of Copenhagen Brit Ross Winthereik IT-University of Copenhagen

The making of self-monitoring asthma-patients - Mending a split reality with comparative ethnography

Abstract

Calls for more evidence to support the ever-increasing efforts to use ICT in medical work, argue that rigorous facts are necessary to make substantiated use of these technologies viable in practice. STS-researchers studying the use of ICT in everyday clinical practices in contrast argue against such need for evidence produced under controlled and thus unrealistic conditions. Both however, seem to operate with a split reality (Despret, 2004), where the pseudo can be distinguished from the real; the situated from the scientific. We argue that a comparative ethnographic approach can work to mend this split. Comparing uses of an internet-based selfmonitoring tool for people with asthma in a general practice setting to the use of the same tool in a randomized clinical study, we show how different effects are produced in the two settings; effects that are better conceptualized as concerning the enactment of different assemblages of bodies, identities, and technologies than as concerning the creation of evidence and failed implementation.

Key words: Comparative ethnography, ICT, randomized clinical trial, General Practice, asthma monitoring, patient bodies and identities. Word count: 7711

Introduction
As healthcare systems progressively work toward using information and communication technologies (ICT) as a means to deliver effective and patientcentered care the multiple effects of ICT are increasingly difficult to handle. Various calls for more evidence-based knowledge of the effects of ICT on general organizational and illness-related parameters have intensified among both medical practitioners and policy makers (Robinson et al., 1998; Eysenbach & Norman, 2004; Gagnon & Scott, 2005), while so-called unintended effects of which there are many, are not studied to the same extent (for exceptions see: Berg, 1997; Svenningsen, 2003; Winthereik & Langstrup, forthcoming). This paper compares the production of evidence for an internet-based tool for the self-monitoring of asthma patients called LinkMedica, to the use of LinkMedica among general practitioners (GPs) and their patients1. Besides working as a selfmonitoring tool for patients the site, LinkMedica.dk, also included an online clinical decision-support tool for primary care physicians. In the spring of 2005 two central events occurred in relation to LinkMedica. One event was the publication of the scientific results of a randomized clinical study which suggested that the use of this online technology as a means to monitor and treat asthma at a distance provided comparatively better results on asthma control than achieved in general practices or among specialist not using the technology (Rasmussen, 2005; Rasmussen et al. 2005). The second central event, occurring only one month later, was the closing down of the LinkMedica portal that had provided asthmatics and GPs with the online monitoring technology since 2001. One reason for this was that patients use of the portal was not supported by GPs. Our point of departure is the apparent paradox between the successful trial and the discontinuation of the technology. In the clinical practices of primary care, where LinkMedica had been sought implemented over a period of four years, the technology had not become the success it became in the clinical trial. How come a success was produced in one context and not in the other? And what possible relations between the two events can be detected using a comparative analytical framework?
This paper is based on the doctoral study of Henriette Langstrup, investigating

ethnographically the construction, use and evaluation of LinkMedica (Nielsen, 2005).

ICT in clinical trials and in everyday healthcare work Scholars studying ICT in healthcare practices within the tradition of Science and Technology Studies have called for more context-sensitive methods when documenting the effects of ICTs in medical practices (Monteiro and Hanseth, 1995; Henriksen, 2003; Berg, 2004). In this perspective it makes little sense to use a randomized controlled trial to document the effect of a technology the effects of which will inevitably be different when put into use in other organizational, and professional settings. In the perspective of the calls for context-sensitivity little or no information relevant to everyday use-settings can be carried from the clinical trial and into the everyday setting of use. Though we sympathize with this call for not studying ICT as detached from its use-context, we want to argue for the inclusion of research practices as a relevant site in which knowledge about ICT and health care is constructed. We argue in favor of comparing sites through juxtaposing analyses of how ICT and health care are done or enacted in the individual use-contexts (Mol, 2002a). Arguing over which practice is more real only works to split reality 2 (Despret, 2004), with little change of creating mutual understanding and debate. Moreover we want to argue that in empirically juxtaposing what takes place in clinical trials with what takes place in everyday practices with ICT, we can propose a way to get beyond these discussions of where the "most real" reality is to be found. Rather than excluding various controlled and clinical studies of the effect of ICT as pseudo, i.e. as misrepresenting the real practices in which technologies are to be used, scholars from the sociotechnical approach might instead include these practices as valuable sites of studying how ICT is enacted in healthcare. There are various reasons for this. For one, evidence for ICT in healthcare is not to be seen as neutral knowledge, but as part of a constructive stabilising process (May et al. 2003; 698). May and colleagues argue that a clinical study participates in introducing and in
2

In Desprets work on the affective dimension of knowledge production, this split refers to

the normative differentiation between the facts and the artifacts that are produced in an experiment (Despret, 2004). Traditional positivist research methodology argues for the establishment of research strategies and procedures (e.g. randomization and double-blind procedures) that minimize the unintended production of artifacts or pseudo-results stemming from other sources than that of the intervention itself (Ibid).

reconfiguring healthcare practices in such ways that these practices become part of other practices within healthcare systems. In this light, evidence works to change practices, not because it represents truth, but because the practices are being changed through the production of evidence (ibid.). Another reason for including evidence-producing practices of ICT as practices worth looking at when trying to better understand ICT in healthcare is that these research settings have a specific capacity in creating certain realities and certain identities (Dehue, 2002). It is possible to make things work in the research setting that may not work in other settings. Randomized controlled or clinical studies therefore produce important information as to what it would take to make particular ICT work in other settings. They do not just control variables in such a way that it becomes possible to compare results between groups; they also create that, which is to be compared (Mol, 2002b). In the following, instead of having to decide which reality is more real, our analytical framework consists of a comparative optics (Knorr Cetina, 1999; p. 4) to make one setting in which ICT is done into the lens through which we view the other and vice versa. Putting the clinical study of the LinkMedica technology on empirical and analytically equal footing with implementation and use of LinkMedica in General Practice, we suggest that the focus should turn toward the different realities created by these settings. We will argue that comparing the randomized clinical study of an ICT to the everyday use of the ICT offers insights into what medical studies and everyday use practices produce besides the expected effects. We see our approach as one of critically engaging in the discussion of the abilities (and disabilities) of experimental methods in healthcare research and thus of dealing with the construction of possible futures outside research (Rapley et al., 2006). Juxtaposing the two practices as we do, we also seek to intervene analytically in the implied knowledge hierarchies made up between knowledge produced in clinical research and in everyday clinical practice. The normative dimension of comparing the two settings is not to argue that the knowledge produced in the two settings should be considered equally objective; that they are basically the same. Rather it is to be sensitive to the practices and local scales that produce what counts as knowledge as well as to the effects of such practices. Our normativity lies in being concerned with what is produced through specific practices and interventions, rather than with how practices and interventions can most precisely represent an underlying reality.

In the following, we will first introduce the LinkMedica technology and the two settings in which the technology is put to work: the clinical study investigating effects of the technology on asthma control and a number of GP practices where LM was implemented. Secondly, we will compare the specific work done in the two settings to make LinkMedica work as a monitoring tool. These events are all concerned with making patients into self-monitoring asthmatics, but in very different ways.

LinkMedica and the Asthma and the Internet Study

LinkMedica.dk was a Danish online asthma- and allergy portal, developed by the pharmaceutical company AstraZeneca in cooperation with a Danish patient organization and specialists on asthma and allergies 3. Apart from providing different options for information and debate to lay users, its main functionality was a "controlcentre" for asthmatics by which they could engage in online self-monitoring. Ideally, the monitoring was done in co-operation with a GP. The monitoring consisted of two related functionalities: 1) A daily status shown to the patient on the basis of data (primarily peak-flow readings) entered by the patient telling him/her how to regulate the pharmaceutical treatment in accordance with current symptoms and measurements, and 2) a control status calculated from longitudinal data and shown only to the professional as a decision-support option. The professional had access to an overview of the daily entries made by the patient in a patient-list and could do calculations on their data to get the control status, which would suggest an asthma
3

Intermittently, from 2001-2004 an ethnographic study of LinkMedica was conducted

following the emergence of this technology as a new technological health actor in the field of asthma management (Nielsen, 2005). The methodology of this study resonates with ActorNetwork Theory (Latour, 1987; Law, 1986; Callon, 1986) - that is by observing in realtime activities related to the development, implementation and use of the technology in question in the various locations and practices to which it travels or by seeking to reconstruct such a chain of related events through qualitative interviews with people involved in the such practices. More specifically this included (i) semi-structured interviews with developers, managers, asthma specialist, patient representative, patients, researchers and GPs (n = 30); and (ii) participant observation of meeting and courses at AstraZeneca and activities related to the use of the system in clinic and research settings. Furthermore various kinds of written materials were included in the analysis.

score and suggest an appropriate level of pharmaceutical treatment. Between 2000 and 2004 the system was being implemented among general practitioners and their asthma patients. AstraZeneca provided GPs with courses in using LinkMedica and supported them in getting started using the tool in their daily work with asthma patients. In parallel a clinical study was set up to document the effects of LinkMedica. The study was set-up as a randomized clinical study involving 300 participants all being diagnosed with asthma and subsequently randomized into one of three groups: General practice4, out-patient specialist care5, and Internet-based treatment. The study was partly sponsored by AstraZeneca, but it was carried out at a public hospital research facility independent of the company both in terms of protocol and publication of results. In the following we will concentrate on the Internet-based treatment group and the ways through which asthma patients acquired new identities as self-monitoring asthmatics.

Recruitment
Recruitment for the trial Age 18-45, exhibiting asthma according to international criteria, provision of informed consent, and the ability to read and write in Danish. Those were the inclusion criteria in the clinical trial. Exclusion criteria included having chronic obstructive pulmonary disease (COPD), participating in and ongoing outpatient program, having a GP, who already used the LinkMedica-tool, and a general unwillingness to cooperate with the treatment program of the study. Participants for the study were either asthma patients, who had been "inherited" from another study at the research unit or participants that had been found on the basis of a screening of a wider population6. Contrary to the internally recruited participants the second group
4

This group served as control-group as the patients themselves were to initiate any contact to

a professional beyond the diagnosis received in the baseline monitoring of the study.
5 6

The out-patient unit was located at the same facility as that of the research department. Screening here involved a geographical delimited group of people fitting the age-criteria of

the study, who received a questionnaire by mail. In addition to filling in the questionnaire, they were also asked whether they would like to come into the research unit for an

also contained people, who had never been diagnosed as asthmatics. I received a letter asking whether I wanted to be checked, and as most of my fathers family has asthma, I thought that it might be a good idea to have it checked. And then it turned out I had it (Interview with research participant) This participant recognized that she might very well be the subject in question, though she did not feel ill or have complaints in relation to breathing. Being interpellated (Althusser, 1971) called in was not dependent on her individual experiences of feeling well or unwell in her airways; the call partly constituted her asthma identity and this identity was later confirmed at the research unit. Regardless of previous diagnoses, all participants had to be examined and get a new description of their medical condition written/formulated in the language of the clinical study. Creating research participants anew implied a thorough examination at the research unite including the latest cutting-edge diagnostic equipment for asthma. Here the prospective participants were examined and received the verdict on the condition of their airways. Moreover, they were subjected to a methacholine provocation test, in which an asthma attack is artificially provoked. The reactivity of the participants airways to this provocation is a reasonable indication for asthma. For participants, who had not previously been diagnosed with asthma, and who might never have had an actual asthma attack, this was experienced as a defining moment. Robert, who had never had an attack, only found out that he had asthma through his participation in the study. Experiencing an attack though artificially provoked and receiving relief medication to counter it, was central for him to begin to consider himself asthmatic. It really was a totally new experience [having an attack], I have to say. But it was a good thing that I reacted to easily to the medication, so if I have a severe attack, then I should be able to get through it quickly, because I reacted quickly to the medication (Interview with Robert, research participant) Robert becomes an asthmatic in and through these diagnostic procedures (Mol, 2000).
examination, which could verify that the symptoms they described in the questionnaire in fact indicated asthma.

The tools of recruitment (inheriting participants, screening with letters and questionnaires) and of verifying indication of asthma (e.g. methacholine test) are participating in creating the very phenomenon, which they are designed to register and intervene in (Ibid). Recruitment for general practice Whereas recruiting participants for the clinical study was relatively straightforward the GPs on their part had difficulties in recruiting their patients to become users of LinkMedica. The GPs had been told that LinkMedica would be useful for all their patients who had asthma with some variability. But they too had to find them first. Even if they obviously knew, that within their group of patients, there were people who had asthma, it wasnt necessarily easy to identify them. Also here the use of different diagnostic tools and work routines participated in producing the specific asthma. Some GPs had participated in research on asthma earlier and thereby these GPs had come to know which of their patients fitted the category of asthmatic. One GP even had a card index, he had made for him self as part of such an earlier study.. Others had more trouble localizing possible candidates. Several GPs indicated that they could do a search on asthma in their electronic patient record, but in practice this only worked if the entries had been made in accordance with predefined diagnostic codes, which is often not the case (Winthereik, 2003). Without a fully coded electronic record system the GPs had to resort to other means. Here lists of prescribed medication became the most important identity marker and the lists could be used to recruit patients when they called in for repeat prescription or during consultations initiated by the patients themselves. But even when patients taking asthma-medication had been identified, this wouldnt ensure that they fitted the standard criteria implied by the LinkMedica system as asthma medication was given to other patients than pure asthma patients. The acuterelief medication can many of the GPs argued be prescribed without significant medical side-effects. Even when there is doubt about the precise diagnosis it is seen as relatively harmless. When people present their GP with complaints that resemble asthma, they dont always go through the most thorough diagnostic process. Most of the interviewed GPs felt confident in their diagnostic procedures, but some

experienced that in the process of finding candidates for LinkMedica some of their asthma patients were in fact better categorized as COPD patients. In relation to LinkMedica this would disqualify patients as users of the tool. In a project like this, there are some asthma patients that you would like to treat, and then they come, and you have to find out whether they have been taking their medication. Furthermore, if you havent been that conscious about their disease, then youll have to go into it and measure their lungfunction, their peak flow, and things like that. In some cases you will find that what you are dealing with isnt asthma at all they actually have COPD, which means smokers lungs, too-big lungs. This is a condition you cannot treat using this [monitoring tool], and for which you actually cant get any real medication. But it isnt in to say: I have ruined my lungs by smoking too much; it is more in to say I have asthma. And thats why a whole bunch are being excluded, because there isnt any reversibility to be found. You cant give them this medication and watch them get better. So these are not asthma patients, and it turned out I dont have that many asthma patients, and that actually surprised me (Interview with GP B) Apart from making LinkMedica a less potent tool this re-inscription of identities shows some of the possible adverse effects of the implicit exclusion criteria as experienced by the GPs. The differentiation between asthma and COPD brought on by the re-diagnosis, forced the GP and patient to face up to something with no easy technical solution. Also as suggested in the quote, this identity might be less than desirable for the patient, who does not get any new treatment options, but possibly more guilt and a more serious prognosis. When comparing the recruitment process in the clinical study and in the GPs practices it is important to note that those excluded from using LinkMedica by the GP are still his/her patients. The GP still has to treat them and this is why the question whether an asthma identity is preferable to a COPD identity becomes important to the GPs, even if from a medical point of view a patient could be diagnosed more precisely as asthmatic. In the clinical study the consequences of inclusion/exclusion somehow matter less as the researchers can always tell the excluded patients, that they should go and see their GP. In comparing recruitment in the different settings we see that asthma is produced in two different

ways. In the trial it is enacted as technologically verified obstruction-andinflammation-of-the-lungs, while in general practice it is first and foremost subjectively experienced I-have-problems-breathing-I-need-medical-help. This ability of the clinical study and of laboratories generally (Latour, 1983; Knorr Certina, 1999) to build up the world and its subjects more or less from scratch is central also in the following comparison of the work done to make the patients and participants into users and data-generators.

The making of LinkMedica-users

The next event that stands out in both settings the clinical trial and the implementation in General Practice is that of configuring participants and patients as users of an online monitoring tool 7. In both the clinical study and in General Practice this demanded different strategies compared to what would usually take place in both a clinical and a research setting. In both settings the participants were to be instructed as users of LinkMedica, which in practice meant instructing them to become data-generators. Making people with asthma into data-generators was handled differently in the two settings. The clinical study: Caring for participants First let us look more closely at the work done in the trial to make participants into users and thus available for quantification and treatment when at home. Instructing the participants to become users and data-generators meant that the primary researcher, Liza8, had to engage in online registration, instruction of how to use the Internet site and trouble-shooting. I just show them how to log on and I enter their basic personal data. Then I show them the diary and [tell them that] this is what they are supposed to use to enter their data. [] Then I explain to them, that they will be scored every
7

While the previous section concerned the general recruitment of all participants in the

clinical study, we will now only be concerned with participants who got randomized into the Internet group.
8

The names of the researcher and the research participants have been changed.

day as green, yellow, or red, and that a plan for how to treat their asthma will appear: if yellow, they should increase their [medication] dose and so on. But I also tell them that they can call me if they are in doubt. Then I can guide them. It was on the basis of the data entered daily by the participants that the researcher would use LinkMedica to suggest the best level of pharmaceutical treatment and thus if it worked as suggested get the participants asthma under control. In the clinical study it was exactly the abilities of this decision-support system, which were of interest. It would suggest the correct treatment and to be able to get it to work in the first place data had to be entered. The participants asthma was quantified and submitted to variable dosages of medication. The system was thus not primarily a self-care system, but an extended laboratory setting, which allowed clinical experimentation to take place beyond the hospital research facility9. The on-line treatment (Liza regulating their medication dose on-line) makes possible a different kind of intervention and one that is also more radical in that it experiments on the airways with high doses of medication. Independence from having to use data gathered in live consultation (the traditional clinical encounter) as the sole basis for deciding once and for all what the correct score and the correct combination of medications should be, simply opens the door to asthma control on the lowest possible dose of medication for an extended period of time. This is different from in general practice where standard doses are followed until the next visit by the patient: I always start [the Internet patients] up with the maximal dose [of preventive medication, i.e. glucocorticosteroid or inhalation steroid], except if they are GINA-score 110, where you only use acute medication when needed. . . . If they have a GINA-score 2 or more [up through 4], then they
9

Participants received the daily status-messages, showing them how they were doing (red,

yellow or green) and suggesting to them how much medication to take within the medical regime prescribed to them in accordance with their level of asthma severity. The data submitted also and more importantly provided the basis for re-calculating the overall asthma severity (control status) over time and thus suggesting to the researcher whether or not the medical regime should be changed.
10GINA

score 1 indicates a case of mild asthma.

need preventive medication, which is inhalation steroid. I will then start them up with 1600 micrograms, the highest dose, and then I will do a control calculation after one month on that dose to see whether I can go further down or whether they should stay there. I try to step down to the lowest possible dose during these three months. After this, I tell them, now you can use the program as you feel is needed if you get symptoms or you can use it every day if you like to use it.11 The participants were becoming users of LinkMedica, engaging in self-monitoring but also became available to on-line experimentation through their own data production/through representing their asthma digitally/virtually/quantitatively. This internet-mediated relationship between researcher and participants created an obligation on behalf of participants to obey the apparatus and to stay quantifiable as the status of the participant was continuously visible to the physician/researcher. She told patients that these data were important and would be expected to be entered in the two-weeks intervals for control calculations; if they did not comply, they would receive a call or email reminding them. Non-compliance would be instantly visible on the physicians online patient list. If she observed any patients with long periods of yellow messages (the daily status as communicated to the patient through the colors of green, yellow or red) or more than one red message, then she would contact the patient to ask how things were going (Interview with researcher, 2002). So while these interim entries were in principle optional, in practice they worked as a way of indicating to Liza how the participant was doing and whether she should contact them. In the clinical study participants become self-monitoring subjects vis--vis Lizas and LinkMedicas authority and continuous engagement. At a control visit a participant, Bodil, is filling out the questionnaire while Liza is doing some calculations just beside her. Bodil is reading out loud from the questionnaire: How often does your physician allow you to take responsibility for your own treatment? What do they mean??

11

This method of establishing the best possible level of medication is called downward

titration.

Liza: Well, thats me they are referring to Bodil: I find that difficult to answer. I am the one who should manage it, and you shouldnt have to be there all the time saying please remember!. But it is really nice to know, that someone is checking up occasionally. Liza: Answer as best you can In the study the simultaneous provision of care and production of asthma control is delegated to a network of actors; it is embodied in the participants daily practice of monitoring, done through the computers algorithms, and occasionally centralized in Lizas monitoring and interventions. While the setup of the study as well as the design of the technology was to ensure this control, the establishment of durable attachments between the patients and the study, between the study and the home, depended on and had consequences beyond the issue of control. It also depended on care. Patients are doing self-care, but this care and related production of asthma control does neither work independently from the care provided by Liza (they know that she is keeping an eye on them and will react, call them, intervene if it is needed), nor from their care for Liza and her research project. They are not just created as detached, autonomous self-monitoring asthmatics, but also as dependent patients and obliging research participants or co-producers of clinical data. The participants not only feel obliged to do what they are told because it is a scientific trial, but also become passionate about providing what could be necessary to create new knowledge about asthma. Robert in particular, enjoyed the idea that he was contributing to science: I have to say, I am quite drawn-in by it! (Observation note, 2002). Bodil, who said that she herself should be in control, points to the excitement of participating in a scientific trial that entails being surveilled: I had to sign some forms [at the registration as a participant in the study, red.] and it was made explicit that it wasnt binding or anything. You could quit at any moment, if you wanted to. But I dont want to do that. I find it extremely interesting, and I like being surveilled. (Interview with research participant, 2002)

In the trial the work done by Liza of constructing the participants as user of LinkMedica and thus as data-generators, seem to have the effect, that agency who controls whom, who chooses what becomes somewhat unclear and that participants come to care for the project, just as Liza cares for them.

Making patients into users in general practice: Framing patients as autonomous LinkMedica-users In General Practice, the GPs found it a challenge to instruct patients in how to use LM. For one, introducing an online monitoring tool bordered on marketing private services, something which Danish doctors with an agreement with public health insurance are legally prohibited to do. As one GP explains: Well, we are not supposed to call a patient up whenever we feel like it. We are not allowed to do unsolicited promotion of our services. It has to be the other way around. The other way around means that the patient takes the initiative against asthma first and foremost as I-have-troubles-breathing-I-need-medical-help. But the on-line service implies that the GP should watch the asthma data of the patient and react by mailing or calling if the data indicates an exacerbation of the asthma, on which the patient has not reacted properly. Here the right to define what should be acted on is delegated to the technology and to the GP privileging asthma as obstruction-andinflammation-of-the-lungs. Apart from making unclear the distribution of responsibility if a severe worsening of the disease had been left unnoticed 12, the GPs also feared that this shift in distribution of initiative might produce an unnecessarily high demand for certain services (visits and medication) thereby taking up their time and increasing public healthcare spending. When actually choosing to use LinkMedica for their asthma patients, the GPs were not very active or persistent in teaching their patients how to use LM or in keeping them on as users. Again, the traditional distribution of initiative and responsibility in General Practice kept them from using time to make their patients into LinkMedica
12

In a legal sense the people responsible for LinkMedica did not see this as a real problem.

The site stated that it was always the responsibility of the patient to take contact to his or her patient if experiencing a worsening of his or her condition. Nevertheless, the legal distribution of responsibilities does not have to coincide with the moral one.

users and thus self-monitoring asthmatics. Where Liza in the clinical study used much time to show her participants how they should log on the site and enter their data, the GPs were reluctant to use their time with a patient for this kind of activity 13. It would take up their time, they questioned whether it qualified as medical work and they felt that it was the responsibility of the patient to make an effort. If you have to push [patients] all the way and call them every morning and [say]: Remember to type in [the data] then there is no point in doing it. And if you cant get an educated person to do it, then who will? (Interview with GP E) Like this GP, several of the GPs reported, that they could get people to log on the first time, but that they didnt enter their data continuously. But they also reported that they did not think it their task to call up patients to remind them. They saw it as the responsibility of the patient to learn how to use the tool and keep using it. It will take a change of attitude on the part of the patients, if they are to take on more responsibility. Because if youll have to call them up to remind them to start entering tomorrow, when we have a control visit next week, then it loses some of its potential. They should do it of their own initiative (interview with GP E) These GPs in a sense waited for a sign from their patients that this tool was their tool, something that they used for themselves. Even if a few GPs acknowledged that it might have helped if they had bought some time to build a narrative into the patient, they unlike Liza in the clinical study were reluctant to intervene in such a way. As their patients refrained from or stopped entering data into LM, most came to the conclusion that asthma patients didnt want to monitor. My general impression is that asthma patients dont want to monitor. It doesnt matter whether it is on paper or on the computer. The illness isnt fatal in the long run, at least not that dangerous. And they can feel in their
13

The GPs were not paid for their time instructing people on how to use the system. As

LinkMedica was seen as a tool to be inserted into everyday practice and not part of a trial or a special project there was no such compensation.

bodies when they start getting worse, and they then start treatment. They are not interested in knowing in advance that theyll soon be getting worse and then trying to avoid it (Interview with GP F) Thus met by less than enthusiastic patients who soon after signing in as users stopped entering the required data, the GPs found themselves obliged to allow the patients to decide for themselves whether or not they would be available for quantification when at home. But in contrast to the clinical study, this availability remained less important for the GPs than for the clinical study. In fact, the GPs were generally un-interested in the data submitted by the patients, as they saw the tool as one primarily for self-care. I think it is primarily an educational tool for patients. I am not sure that it is a tool for myself. I do think it is a good tool for the patients to get some selfawareness, and I do think they can get that in a couple of months Researcher: Why do you doubt that it might be a tool for yourself? Because I dont care about logging in every day to see how my patients are doing. It is of no interest to me to use such a tool. (Interview with GP G) This lack of interest in the data submitted by the patients was shared by many of the GPs. However, it did not seem to occur to the GPs that this lack of interest on their part in part could explain the lack of interest on the part of the patients. In the examples provided above from the clinical trial, it was obvious how it took the work done by a heterogeneous collective, including Lizas effort to keep the participants attached by calling and mailing, to create a shared interest. They did not merely do it to get more self-awareness, but also to be taken care of and to provide Liza and science with the data needed. The interest in self-monitoring was not there in advance but was part of what was made.

Two LinkMedicas?
In this section we diverge from the symmetry implied in the previous sections. As we have just shown, most GPs stopped using LinkMedica about the same time as the tool was deemed a success by the clinical study. It makes no sense to compare GPs and patients non-use to the continued use as it unfolded in the clinical trial. When we

then choose to include a section on the events taking place in the clinical trial, it is done to show how a comparative logics can also work as a means to juxtapose competing and contrary ideas as they appear within a single setting (Moore, 1987: 735). Within one setting more logics can be enacted at once; logics that do not necessarily add up (Law, 2002). What doesnt add up is how knowledge is constructed with LinkMedica in the study and how knowledge of LinkMedica subsequently becomes accounted for scientifically. These two LinkMedicas suggest a split between the reality made visible by ethnography and the reality as described as a medical scientific fact. The event of interest here is the use of one of LinkMedicas features called the note. Physically the note was an empty text box on the diary page, in which the research participant could write a diary note to him-/herself and/or to his/her physician. By looking at the way this note was used in the clinical trial, it becomes obvious that the participants become more than docile research subjects. With the note different kinds of knowledge of asthma as part of every day life becomes enfolded into the trial, but interestingly, in the results of the trial, such knowledge remains invisible. Where the patients stress the note as central in their appreciation of participating in the trial and thus of LinkMedica, Liza though using the information provided in the note do not consider the information to be clinically relevant to the results of the study. The note was initiated by one of the participants in the study, Robert. He specifically asked for this option to be added to the earliest design of the control centre, which he started out using: I mentioned that it would be a good idea if you, as a user, had the opportunity to add some comments. Because sometimes you are very aware of some good explanation for scoring a low peak flow the day in question. It might also be a good thing for the professionals that it is written down what this is all about. In the note, Robert wrote about colds he had which prompted him to take more medication, and that prevented him from blowing a high peak flow and thus making his score yellow. At other times, he wrote about his sports performances, how well he did, and whether he was affected by his airways. He wrote about activities that

provoked asthmatic attacks, such as cleaning his basement. He asked Liza about different things related to the study and his asthma, and he reported any day-to-day experiences that he saw as relevant to his asthma or to the study. Events he considered outside the standard representation, but still relevant for understanding the asthma in his body, he added in the note. By doing this, he actively engaged in choosing relevant data on how to know asthma, so he was not only providing data, but also intervening in the research project as an active knowledge producer. Moreover, he introduced his life to the study just as the study and its real-time experimentation had been introduced into his life. Though the study worked with standardised data and thus primed participants to provide such data, the note allowed the participants to resist this particular representation by allowing them to provide data on the specificities of their particular asthma. Consider Sara's account: When it went really, really badly, I wrote in the note that I had an exam during the week, and that was why my peak flow was this low. . . . A few days later, I got an e-mail back saying, Good Luck! I say like What! I thought that was really, really nice. That wasnt why I had written the note. I wrote it to explain myself. . . There was an explanation: it wasnt just because I was getting worse and worse, but because I was nervous. When the exam was finished, you could also see [the peak flow] getting better, and when I had received my results, it got a lot better. The self-disclosure that is brought about by the note may be seen as an obligation to make a fair representation of oneself, showing that one is competent even if ones data show a declining peak flow, that one is able to see causalities in everyday life, and that one may contribute to the understanding for ones own individual asthma and thereby to asthma in general. But clearly Sara is also surprised by the care exhibited by Liza she is being recognised as more than peak-flow readings. Robert did not see any difference in the interests that he himself and the professional might have had in wanting to understand what causes the asthma in some situations: It is fairly important for me and presumably also for the healthcare professional. For the user it will be important that it is possible to go back

and look into whether there is some kind of pattern in the way you are affected by [the asthma] and which comments you have noted down when it has been bad. We here see how the note transports other concerns, other stories, and other possible ways of knowing asthma into the study. It also draws attention to the different ways in which the relationship between the professional and the person with asthma is constituted and should be constituted: is it relevant for a professional to receive stories of dusty basements and upcoming exams? Should such things be kept out of the clinical practice, belonging primarily to the realm of private life? Such questions, however, were not addressed in the results of the clinical trial. The work and time that Liza invested in this communication thus remained invisible despite that it clearly influenced both the establishment of durable relations between Liza and the participants and decisions made about treatment14. Interviewer asks Liza whether she is going to report the changes made to the (internet) site and reflect on their influence on her data in her final research report or in her articles. She answers that these are not changes to the parameters, just changes to the web-site, to the design. She didnt use the note in her treatment. For this she only used the automatically generated recommendations. The note worked to explain to her what might have been the background for a deterioration, as an input to a conversation that you might otherwise have had face-to-face in the consultation and as inspiration for self-insight (for the patient). "Only context", she says.

In this way, the final representation of LinkMedica as the source of particular effects on quality of life, on inflammation parameters, of socio-economic parameters, and
14

An example: Robert had written in his note that he had experienced an attack while

cleaning his basement. At the following control meeting, Liza asked about this attack and related it to his use of attack medication. Robert was suggested to take the medication preventive treatment before activities, which might provoke an attack (cleaning dusty basements, sports etc.). In response Robert told Liza, that he had been reluctant to do this, as he experienced side effects of the medication. Liza thus proposed a different brand of medication, which should have none of these side effects.

on traditional lung function parameters as well as exacerbation (from the research protocol) would be reduced to only what was inscribed into the parameters and variables of the decision-support system of LinkMedica15. When the final results were published the conclusion stated, Internet-based asthma treatment improves asthma control and can be maintained for 12 months, in spite of decreasing disease control during the last six months (Rasmussen, 2005: our translation). The close attention Liza paid to the individual patients, their engagement in finding patterns, and participating in assessment and treatment are not what the study set out to demonstrate. GPs had also access to the notes, but the notes did not play any role in the consultations with GPs. In relation to her work on comparative studies of different forms of treatment for atherosclerosis, Annemarie Mol has noted: The conditions under which these findings came into being, however, are hardly spoken about. Silently they are incorporated into the practices that emerge. The fact that these conditions might have been shaped differently only emerges again when they are challenged which they are often not (Mol, 2002b, p. 236). This also true for this trial. If it had not been possible for participants to explain themselves to Liza via the note, if they had not been able to ask her questions directly, if she had not taken their descriptions from their everyday life into account, would that have changed the results, the effects of LinkMedica on their quality of life, the illness in their lungs? These are difficult questions to answer, and our aim is not debunk the design of this particular study. We are, however, more generally questioning how the complexities of an intervention in such studies are accounted for, in particular those complexities that have to do with work of creating and caring for the identities of those being researched upon. One might say accounting for the specific clinical ways of working that arise and become enfolded into the study. Liza was also working as a clinician, trying to fit the treatment she gave to the individual patient. When we ask
15

The reason for this distinction between intervention and context is self-evident and

unproblematic within the methodological frame of this kind of study. What is to be investigated is on-line monitoring as a specific intervention, which can be isolated from other interventions (such as the clinical inquiry). The argument would be, that such clinical interaction, would also take place in the setting to which this one is compared (general practice and specialist care), thus making it a background variable. However, our argument goes, it is not the same kind of relation which is established with or without the note.

here, like Mol, What is being counted in the process of producing facts? (Mol, 2002b, p. 233), it is not to say that such reduction is inherently wrong, but rather to see how choices of relevance and irrelevance are being made. Such choices and conditions are often forgotten when the facts have been produced and made transportable as numbers. Making the distinction between interventions and context produces a split reality (Despret, 2004), where one LinkMedica made up of Liza, on-line experimentation, visits, writing in the note and much more is replaced by another, less messy LinkMedica.

Discussion
By comparing the work done in a clinical trial and in general practice to recruit patients and participants and turn them into self-monitoring asthmatics, we have shown how different results and experiences were produced. While the commonsensical comparison of the two settings and their effects is that one was successful and the other unsuccessful, this kind of thick comparison has demonstrated that there is no fixed position from where success or failure can be judged (Berg, 2001). The effects made visible by juxtaposing the two settings are much more diverse and complex than such judgments suggest. Also one should refrain from doing away with the discrepancies between the effects found in one setting and those found in the other by setting up hierarchical relations between them: the one being real and the other being pseudo, the one being everyday practice the other being science. This is not to say, of course that no knowledge hierarchies exist; that knowledge (about LinkMedica) produced in the clinical study and in general practice is equally influential in relation to decisions about how LinkMedica should be used (results from clinical studies are harder than general practice experiments). But what we show by for a moment bracketing the issue of which reality is most real is that such hierarchies can be and are subverted (cf. the difficulties of implementing evidence-based guidelines in clinical practice). That LinkMedica is not the same tool in the two settings, and that this has implications for the imagined effects of a tool like LinkMedica. In both settings work had to be done, material resources had to be mobilized and challenges had to be handled when seeking to produce self-monitoring subjects, who

could allow LinkMedica to become a useful tool for asthma care. To be more specific, what this comparison has made visible is that both asthma and the identity of the patient were enacted differently in the two settings. In the clinical trial asthma was first and foremost enacted as obstruction-and-inflammation-of-the-lungs through the recruitment and the diagnostic procedures available. The research participant on her part was enacted as a data-generators and as a participant in a more distributed and ambiguous network of research and treatment. One effect here was that the participants and the researcher shared interest in the data submitted and cared for the overall project. In General Practice such a shared interest was not established. Here asthma already existed, primarily as I-have-trouble-breathing-I need-medicalattention and changing this definition proved laborious and had consequences for those becoming excluded by the tool's reframing of asthma (those with COPD). Consequently, patients were enacted as ideally being detached from the clinic and as being themselves responsible for overcoming this boundary between home and clinic. As this did not happen, the GPs stopped using LinkMedica. The comparison also showed how, by juxtaposing the use of the note with the scientific account of LinkMedica as a success, that within the research setting participants and asthma became more than the protocol had prescribed and was scientifically accounted for: The clinical study assemblage made them active knowledge producers, providing context-sensitive accounts of their illness. Asthma, in turn also became more than inflammation-and-obstruction-of-the-lungs: It became interwoven with the everyday life of patients. Unfortunately, this was of doing asthma was never accounted for when reporting on the evidence of LinkMedica up until now. In the scientific articles providing the evidence for LinkMedicas comparably better results on asthma control, there is no mention of the note or of the work of keeping the participants attached to the system. These things were kept invisible as if belonging to somewhere outside intervention, outside the study, in the realm of biases on the other side of a split reality (Despret, 2004). The laboratory provides an enhanced environment for manipulating certain objects and subjects (Certina, 1999: p. 26) this an established insight from Science and Technology Studies (e.g. Latour, 1987). However, to make LinkMedica work elsewhere e.g. in General Practice the split reality has to be abandoned. One should not just count on the tool itself creating certain sought-for effects on asthma, but acknowledge that the heterogeneous practices that jointly produce effects must come along as well. The

script of a technology in and by itself does not determine particular actions (Akrich, 1991); neither does evidence in and by itself ensure success for uses elsewhere. The only way to verify a prediction that a study might make about the beneficial effects of LinkMedica, will be by extending the practices of the study to other specific locations (Latour, 1983). As Latour has argued, Scientific facts are like trains, they do not work off the rails (Latour, 1983:p. 266). However, if it is not made known what these rails are that is the work and resources involved in producing certain effects then this transport becomes difficult. And even more importantly, if the actual effects not just on lung-capacity and inflammation, but also on the patient, the professional and on the distribution of responsibility is kept out of scientific accounts of these kinds of technologies, it will not be possible to engage in more normative discussions on what kind of healthcare systems we prefer. The comparative optics used in this paper provides a lens through which it becomes possible to see the specificities of different practices, their differences as well as their interrelatedness.

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