Copability, coping, and learning as focal conceptsin the evaluation of computerised diabetes diseasemanagement

Egil Boisena,*, Ann Bygholmb, David Cavanc, Ole K. Hejlesena

a Department of Health Science and Technology, Aalborg University, 9220 Aalborg, Denmarkb Department of Communication, Aalborg University, 9220 Aalborg, Oest, Denmarkc Bournemouth Diabetes and Endocrine Centre, Royal Bournemouth Hospital, Bournemouth, UK

Received 20 December 2002; accepted 4 April 2003

KEYWORDS

Activity theory;

Human factors evalua-

tion;

Disease management;

Diabetes;

Coping strategies;

Patient expertise

Summary Introduction: Within diabetes care, the majority of health decisions are inthe hands of the patient. Therefore, the concepts of disease management and self-care represent inescapable challenges for both patient and healthcare professionals,entailing a considerable amount of learning. Thus, a computerised diabetes diseasemanagement systems (CDDM) is to be seen not merely as tools for the medicaltreatment, but also as pedagogical tools to enhance patient competence. Hypothesis:The unfortunate lack of success for most knowledge-based systems might be relatedto the problem of finding an adequate way of evaluating the systems from theirdevelopment through the implementation phase to the daily clinical practice. Thefollowing presents the initial methodological considerations for evaluating theusefulness of a CDDM system called DiasNet, which is being implemented as alearning tool for patients. The evaluation of usefulness of a CDDM, we claim, entailsclinical assessment taking into account the challenges and pitfalls in diabetes diseasemanagement. Results: Drawing on activity theory, we suggest the concept ofcopability as a supplement to ‘usability’ and ‘utility’ when determining ‘usefulness’.We maintain that it is necessary to ask how well the user copes with the new situationusing the system. As ways to measure copability of DiasNet the concepts of coping andlearning are discussed, as well as ways this methodology might inform systemsdevelopment, implementation, and daily clinical practice.– 2003 Elsevier Science Ireland Ltd. All rights reserved.

1. Introduction

Diabetes mellitus is one of the major chronicdiseases and a growing public health problem inboth developed and developing countries [1]. It is a

clinically complex disease characterised by a me-tabolic disorder due to a defect in insulin secretionor action. Lack of insulin leads to high levels ofblood glucose, which is both unpleasant andassociated with a substantial loss of quality of lifedue to the risk of late complications, such asblindness, kidney failure, amputations and circula-tory diseases*/of which diabetic retinopathy is themost frequent cause of blindness in the population

*Corresponding author.E-mail address: eb@hst.auc.dk (E. Boisen).

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of working age in industrialised countries. Dia-betes’ direct costs in the USA in 2002 is estimatedto represent 19% of total personal health-careexpenditures, and medical expenditures for peoplewith diabetes were 2.4 times higher than normal[2,3]. Studies have shown that intensive diabetestreatment with the goal of maintaining bloodglucose concentrations close to the normal rangeleads to a substantial reduction of the rate of thecomplications [4]. However, these studies have alsoshown that an acceptable level of blood glucosedramatically increases the risk of hypoglycemia(inappropriately low blood glucose). It is alsorecognised that a number of patients may havepoor control despite specialist care.

Even though computerised decision support sys-tems (CDSS) may provide a possible answer to someof the problems, none of the numerous systemsdeveloped during the last two decades have, up tillnow, gained widespread use or acceptance [5�/21].One type of reasons for this apparent lack ofsuccess might have to do with the validity of thesystem model in terms of problems in handling theinterpatient and intrapatient variability, uncertain-ties in the data involved, and the fact that theblood glucose control in diabetes is influenced bynumerous factors like stress, fever, exercise etc.Another type of reasons is that even though thesystem model is validated, there is a lack ofusefulness due to functionality problems. A thirdtype of problems might have to do with theconsidered impact of a system, as the physiciansmight consider the CDSSs (either before or afterthey have been implemented) as detrimental todeveloping the doctor�/patient relationship, asundermining their professional status or the art ofmedical practice, interfering with their profes-sional autonomy [22]. This points to a fourth typeof reason being trouble with implementation anddiffusion of a new system because of developmen-tal constraints on the organisation in which thesystem is implemented. A fifth type of reason forthe lack of acceptance might be associated withthe evaluation methods [22�/25]. In a recent re-view, it is argued that this problem mainly stemsfrom the inadequacy of randomised controlledtrials (RCT) which is a common research designwithin medical science and unfortunately alsocommon when evaluating CDSSs [22]. Some of themain reasons stated are that users opinions make adifference, that it is difficult to determine therelevant variables beforehand, and that the assess-ment activities are having (and in effect, shouldhave) influence on the systems development.Finally, a sixth type of reason might be that systemshave not been designed and put to use with an

adequate purpose. As shown by Bijker, new tech-nology needs time to maturate, that is, time forthe technological frame to emerge; a technologicalframe structures the interactions among the actorsaround an artefact in terms of, e.g. the emergenceof adequate problems for the emerging solutions[26].

Though this list of aspects may not be complete,it illustrates the complicatedness of the processleading to well-functioning systems. To tackle oneof the essential problems, our present goal is topresent a methodology for evaluating the useful-ness of a CDSS for diabetes patients. Our approachis that evaluation should be an essential andintegral part in every phase of systems develop-ment to ensure that the essential stakeholders’goals are fulfilled [25,27,28]. Concerning the goalof implementing a CDDS into diabetes care, wehave come to believe that a decision supportsystem in the classical sense is not enough, andthat more emphasis should be put on patientempowerment. And we believe that the keywordsin such a strategy should be education and com-munication. Hence, we need to develop an evalua-tion methodology, which is specific to this goal.

As a strategy for evaluating knowledge basedsystems, Engelbrecht et al. differentiates betweenfour levels of analysis: Verification, Validation,Human Factors Assessment, and Clinical Assess-ment [27], stating that Human Factors Assessmentseeks to determine whether or not a system isuseful and usable. Focusing on ‘usefulness’, weemphasise that the CDSS in question needs to beuseful as a disease management system for patientuse. A key figure in user-centred design, JakobNielsen, presented a taxonomy on aspects ofsystem acceptability. In this taxonomy, usefulness,being a subcategory of practical acceptability, hastwo subcategories, being usability and utility.Whereas utility has to do with the match betweensystem functionality and user needs, usability hasto do with how easy it is to make use of thisfunctionality. Nielsen’s list of usability aspects inthis taxonomy includes ‘subjective user satisfac-tion’, ‘efficient to use’, ‘easy to learn’, ‘easy toremember’, and ‘few errors’ [29]. We want topoint out that utility and usability aspects areheavily interrelated in the individual use context,and that you cannot have a thorough usabilityanalysis without a utility analysis. The user-inter-face of a modern two-seat sports car can be almostidentical to that of an economic station wagon.Thus, an analysis of the usability behind the wheelof the two cars could easily be very similar. But ineveryday use, aspects like ‘efficiency of use’ or‘user satisfaction’ might still be very different for

354 E. Boisen et al.

the two cars as they match different life styles. Inother words, even though we start out to focus on‘usability’ of a system, eventually we will have toask the broader question: ‘What is the usefulnessof this system?’ We further argue that even thougha tool has high levels of usability and utility, we stillwould not be sure whether the user would experi-ence great usefulness in terms of enhanced abilityto ‘cope’. One example is the word processor:some have argued that exactly because it has greatfunctionality, which is easy to use, it easily impairsthe writing process as the user will be inclined toconstantly edit the text or to reuse old materialthat sitetracks the line of argument [30]. Anotherexample is the ‘C-pen’, which makes it possible toscan specific lines from a book and save those on aPC. The C-Pen saves the user from the workload oftyping the citations. But even though the C-penwould have both the desired utility and be easy touse, it might be too easy to end up with afragmented book instead of a note that is easy tooverlook. Thus, the C-pen has to be administeredwisely in order to have great usefulness. We,therefore, suggest the need of a third conceptabout usefulness in addition to usability and utility.Building on activity theory, we argue that in orderto describe usefulness of a computerised diabetesdisease management system (CDDM) it is importantto evaluate the integration of usability and utilityaspects, i.e. the degree to which the systemenhances the patient’s ability to ‘cope’, not merelyas a user of the system, but as a person with adisease. We thus suggest the term ‘copability’ as athird aspect of usefulness.

Thus, we argue that an assessment of HumanFactors Assessment in terms of usefulness isrelated to clinical assessment. Treatment out-comes in insulin-dependent diabetes (IDDM) pa-tients are often measured by metabolic variables,where glucosylated hemoglobin (HbA1c) and thenumber of hypoglucaemia are the most common.We claim that these and other traditional para-meters need to be complemented by criteria ofquality of care, which are relevant in the givencontext of diabetes disease management. Thus, weneed to take account of the challenge of diabetesdisease management and to identify the relevantcriteria for quality of care within this approachwhile keeping in mind that the goal of DiasNet is toenhance patient empowerment.

Having made these initial observations, we nowturn to the task of outlining a methodology forevaluating DiasNet as a tool for enhancing self-carein diabetes. First, we will look into the backgroundof developing the system in terms of the challengesof diabetes disease management. Next, we will

introduce activity theory as our theoretical foun-dation for the concept of copability, being the coreconcept in our evaluation methodology. Then, wewill present ways to measure copability throughthe concepts of coping and learning. And finally, wewill discuss ways to employ this methodology insystems development, implementation, and dailyclinical practice.

2. Background*/the challenge ofdisease management in diabetes

In IDDM there is little or no remaining endogen-ous insulin production. A balanced supply of insulinis, therefore, indispensable, typically by way ofinjections several times a day. Adjusting the treat-ment is not an easy task. Insulin is responsible forthe absorption of glucose in the cells. But the bloodglucose level is dependent on a number of otherfactors, prominently the intake of carbohydrate,but also the amount of exercise, warm weather,stress, illness, travelling, menstruation, intake ofalcohol*/in short, many aspects of everyday life.Thus, as the vast majority of healthcare decisionsare in the hands of the patient, a number of studiesshow evidence in favor of considering active self-care a cornerstone of diabetes management [31�/

33]. Diabetes care is bound to fail unless it resultsin long-term changes in behavior that lead tosuccessful self-care.

Disease management may be defined as a systemof coordinated healthcare interventions and com-munications for populations with conditions inwhich patient self-care efforts are significant[34]. In trying to illustrate the difference betweentraditional medicine and the disease managementapproach, Kate Lorig (2001) identifies three modelsof care by way of a metaphor about what we dowhen people fall into ‘a river of illness’. Whereasthe classical model of medical care focus on pullingpeople out of the water, and the public healthmodel tries to prevent them from falling into thewater, the disease management model dealing withchronic illnesses is directed towards teachingpeople how to swim [35]. The task of teachingdiabetes patients how ‘to swim’, presents bothhealthcare professionals and patients with a hugechallenge of which we will discuss three aspects:patient motivation, patient learning, and psycho-logical responses to the emotional stress in livingwith diabetes.

Firstly, an important type of problems has to dowith motivation and the differences in perspectiveof the patient and health professionals. It is not

Evaluation of computerised diabetes disease management 355

only a matter of informing the patient about ‘theright thing to do’, as the readiness to adjustbehavior depends on the patient’s evaluation ofthe perceived threat and the costs and benefits ofaltering behavior [36]. Thus, important aspects ofthis problem might be deviating perceptions ofhealth threat, or that the perceived costs mightovershadow the benefits. Poor metabolic controldoes not necessarily prevent the patient fromfeeling great. In some studies, IDDM patients withpoor metabolic control expressed more experienceof well being than those with good metaboliccontrol [36,37]. Also, it might not be easy for thediabetic patient to understand the health threat oflate complications due to a high level of bloodglucose [37]. In addition, the patient is likely tohave a different view of the costs of compliance.Fear of hypoglycemia has been reported as a majorreason for poor metabolic control [38], which isquite understandable as good metabolic controlincreases the risk of hypoglycemia [4].

Secondly, in order to play a significant role indisease management, the diabetes patient needsbasic knowledge about the medical aspects ofdiabetes, e.g. about food intake, injection sites,action of insulin, management of hypos, and theeffect of exercise and other factors on bloodglucose levels. And as chronic diseases interfaceswith two sciences in addition to the biomedical,being the environmental, and the behavioral [39],the patient may also need information about‘environmental’ issues, such as social pressure,e.g. in terms of stigmatisation or of persuasion todivert from a healthy diet when going out, as wellas ‘behavioral’ issues in terms of self-management.Focusing on self-management, we distinguish be-tween two types [40]: on the one hand ‘patient-compliance’, being a rigorous observance of aregimen characterised by external control, and onthe other hand ‘self-care’, being a more flexibleand personalised approach characterised by inter-nal control. Although the latter approach obviouslyis more ambitious, demanding a lot more compe-tence by the patient and thus representing agreater pedagogical challenge for the health pro-fessionals, it has consistently been found to sustainbetter outcomes [33]. However, as a part of‘growing up’ as a patient, the self-care approachmay also imply taking a personal stance to the goalof the disease management activities. Thus, thepatient may insist on ‘doing what’s right. . . for me’[41], which is not necessarily in alignment with theadvice of the health professionals. Diabetes andeveryday life of the patient are heavily interre-lated, and this may lead to a conflict betweenmaximising somatic health and psychosocial ad-

justment, or to a conflict between management ofthe disease, and the person’s total goal in life [37].Studies indicate that in order to ensure a construc-tive doctor�/patient relationship, is important notto overrule the patient’s perspectives [35,36].

Thirdly, it is important to take account of thepsychological response to the emotional stress ofhaving to live with diabetes. A prerequisite forbecoming well stabilised is metabolic control of allthe factors that influence the blood glucose level.Thus, as the concept of control permeates theconcerns of the IDDM patient, and as patients arelikely to compare themselves to the ’perfectdiabetic’, there is a likelihood of contra productiveemotional response, such as feelings of guilt and insome cases tedium, a burn-out syndrome amongpatients [33,36,37,41]. Therefore, as the emo-tional outcome of self-care might be an Achilles’heel of disease management, the importance ofemotional outcomes has been the subject ofincreasing attention.

To sum up on the challenge of diabetes diseasemanagement, diabetes care involves more thanworking out an adequate regime. To make diseasemanagement work, the patient needs motivationfor the necessary life-style changes, to gain a greatamount of knowledge on how to do so, and to keepup the good spirits in order not to be demoralised.In effect, these aspects imply taking account of thepatient’s perspective.

2.1. DiasNet*/a diabetes advisory system

Most of the CIS services and, in particular, CDSSsystems that have been developed over the yearshave been supporting the conventional approach totreatment, i.e. that the clinician is the centralperson in achieving better results. In recent yearsthere has also been work focussing on the enhance-ment of disease management in which the patientplays a significant role. DiasNet is a result of anaspiration to integrate those views, being a dia-betes advisory system for both patient and healthprofessionals [42]. DiasNet builds on a model of thehuman carbohydrate metabolism. The model isimplemented in a causal probabilistic network(CPN or Bayesian network) which gives it the abilityto handle the uncertainty, for example, in bloodglucose measurements or physiological variationsin glucose metabolism. DiasNet is operated in twomodes: the learning mode and the predictionmode. In the learning mode, standard data onblood glucose concentration, insulin injections,and carbohydrate intake from one or more daysare used to estimate patient specific parameters,i.e. the system is adjusted to fit to each individual

356 E. Boisen et al.

patient. In the prediction mode, the estimatedparameters are used to make predictions of theblood glucose concentration, given the carbohy-drate intake and insulin regimen. This mode can beused to predict unrecognised hypoglycemia or topredict the effect of suggested changes in theinsulin regimen or meals on the blood glucoseconcentration.

An essential part of education of diabetes patientsis learning how to achieve good glycaemic control.Using the system, patients can experiment withtheir own data, adjusting insulin doses or meal sizes,and thereby learning how to cope with varioussituations. In this way different therapeutic anddietary alternatives can be tried out, allowing thepatient to gain experience in achieving glycaemiccontrol, without the risk of actually experiencinghypoglycemic or hyperglycemic (inappropriatelyhigh blood glucose) episodes. The effect of in-creased carbohydrate intake during, for example,weekends can be simulated and appropriate coun-termeasures found. Likewise, patients can imme-diately see the effect of a missed insulin injection,and benefits or disadvantages from shifting to adifferent insulin type can be predicted. Comparedwith traditional educational material, the majorbenefit from using the system is that it uses thepatient’s own data to improve the patient’s under-standing of the disease. One of the core benefits ofDiasNet is to help the patient understand thatmedication should be adjusted according to theestimated tendency of the blood glucose develop-ment, and not just as a response to the actualmeasurement. Using DiasNet, the patient can sit athome entering his data into the system running onhis home PC, and in case of questions or problems hecan phone (or email) the clinician, who can use aweb browser on his office PC to view the data thatthe patient just entered. This will allow newlydiagnosed patients to be regularly monitoredremotely, and as a routine part of the ambulatoryvisits, clinicians can use DiasNet to get a clearoverview of the patient’s data without having tospend time deciphering a hand written patient diary.

The DiasNet system has been integrated into thepatient education at Royal Bournemouth Hospital,UK. Due to the promising results, it is currentlybeing implemented at Frederikshavn Hospital inDenmark together with the diabetes school systemfrom Bournemouth. The Bournemouth diabetesschool is originally inspired by the work at theDepartment of Nutrition and Metabolic Diseases atthe Heinrich-Heine-University in Dusseldorf, Ger-many [21]. An important difference, though, is thatwhereas the diabetes school in Dusseldorf takesplace within a full week, the outpatients in Bourne-

mouth only attend the diabetes school half a dayevery week for a month. This way it is possible towork with the patients’ experiences when trying tointegrate what they are learning in their own dailypractice over a month. Like in Bournemouth, asmall number of outpatients are invited to takepart in a diabetes school in Frederikshavn. Thegroup consisting of mostly patients with a longhistory of diabetes is taught general knowledge ondiabetes and given an introduction to DiasNet, andtheir initial experiences with DiasNet is discussedbased on their own data every week. A follow-upstudy on the first group of patients is planned to becarried out in summer 2003.

3. Theoretical foundation for evaluatingDiasNet: activity theory and copability

Activity theory has its roots in the work of theRussian cultural-historical psychology in the early20th century (Vygotsky, Leont’ev, and Luria). Cur-rently a lot of interest is being drawn to activitytheory within the field of human�/computer inter-action [43�/45]. Taking activity theory as thetheoretical stance for our purposes is motivatednot only because of its relationship to moderntheories of learning, but also because it provides aframework for studying human practices in theirsocial, organisational and technological context.We will take a look at three ‘families’ of conceptsof importance for our purposes.

Central to the cultural-historical approach ofactivity theory is the Vygotskyan concept of toolmediation [46]. Most activities in our lives aremediated through the use of tools, includingthinking and use of language by way of symbols.In other words, the way a ‘subject’ is approachinghis ‘object’ (i.e. what he is ‘working on’) is bothfacilitated and constrained in terms of the tool.Thus, as our tools are products of our culture, bothour activities and our thinking about those activ-ities will be influenced by cultural material. This isclose to the proverbial insight that if all you have isa hammer everything looks like a nail. This ob-servation is essential for the founding of ourconcept of ‘copability’, as we are going to describelater. A related concept is internalisation as a termfor the way mental processes are derived fromexternal actions. Cognitive processes of humanbeings are structured through practical activitiesin a social setting by way of making inter-subjec-tive actions ‘intra-subjective’ [46]. This concept isalso closely linked to the idea of a zone of proximaldevelopment, being the distance between what,

Evaluation of computerised diabetes disease management 357

e.g. a child is able to accomplish and when she ison her own and when she is in collaboration with anadult [44]. Also, a related concept here is theformation of functional organs as a term for thephenomenon that human abilities are extended byway of external components. Phenomena like anartist-with-his-pencil or the chauffeur-with-his-ve-hicle are examples of functional organs represent-ing abilities that the human being would nototherwise develop or posses, and which will beintegrated parts of the identity of the artist andchauffeur.

Together with these concepts, another important‘family’ of concepts are activity, action and opera-tion. Activities are oriented to motives, i.e. anobject to be transformed in accordance with adesired outcome. Activities are related to people’scommitment in life. An activity consists of a seriesof actions directed at specific goals, and actionsare carried out in a series of operations determinedby conditions. Goals are subordinate to, anddifferent from, motives, and operations are sub-ordinate to and different from actions. If you aregoing to make a bottle of tea (goal) to sit downwith some friends (activity) and you find out thatthe stove has broken down, you will perhaps boilthe water in a microwave (operation). Later, wewill discuss the relevance of this stratification ofactivity concepts in relation to coping strategies.

A third ‘family’ of concepts is development andcontradictions. The Finnish educational theoristYrjo Engestrom describes how the identificationof contradictions in some complex organisation canbe used in order to focus on how to restructure theorganisation to become more effective [44]. Con-tradictions between members in an organisation orbreakdowns in a working process are thus not seenas negative obstacles, but as chances of focuseddevelopment. As we will see, this can be highlyrelevant in using DiasNet.

The interrelatedness of the two concepts ‘uti-lity’ and ‘usability’, as discussed above, can beillustrated with a model inspired by activity theory.The activity theorist Victor Kaptelinin writes abouttwo interfaces when using a tool, one being inbetween the user and the tool and the other beingin between the tool and the object [46]. Thus, if wecombine Nielsen’s two concepts about usefulness(‘usability’ and ‘utility’) with a classic model of thestructure of an activity within activity theory(‘subject’, ‘object’, ‘tool’) [44], then we can labeltwo of the relations as illustrated by Fig. 1.Obviously, it follows that if a thorough usabilityanalysis implies using the tool in real life activity, itwill include both usability and utility aspects.However, this application will leave the third

relation without a label. We suggest the term‘copability’ for the remaining relation, while keep-ing in mind that this relation is mediated throughthe other two. This application needs some discus-sion.

As described above, an important element ofactivity theory is the concept of ‘mediation’. Everytime we approach an object, one or more tools willmediate our activity. Thus, the tool is the interfacebetween our object and us. Therefore, it will notbe possible to think of an unmediated relationshipbetween subject and object. When a diabeticapproaches his diabetes with the object of stabilis-ing the blood glucose level, he will do so by way ofvarious instruments and medical concepts. Whendetermining the actual blood glucose level, heperhaps will be able to judge this ‘subjectively’(body sensing), but most patients will have to do it‘objectively’ by the tip of a finger. And what ismore, the ability to determine the blood glucoselevel subjectively might increase this way (becauseof ‘biofeedback’) [37]. In other words, there is nointerface between subject and object other thanthe tool(s). However, we want to stress that thesethree elements are in a dynamic relationship, andthat it is not only the case that the subject isworking on the object through the tool, but alsothat the subject might be changed in this process(perhaps to the extend where the subject is nolonger aware of the original object). Vygotsky’sterm for the latter phenomenon is ‘reverse action’[47]. Hence, a way to identify situations where theconcept of copability is relevant is any situationwhere the formation of functional organs leads toreverse action*/in effect, every time we encoun-ter a highly usable tool. A ‘high level of copability’means enhanced mediation of the object with asfew contradictions as possible. (This might well bethe result of reverse action to the extent where theuser is no longer aware of the original object). Itwould not be correct to ascribe this term to toolsthat work well. Instead, we should talk about thefortunate configuration of subject, object, andtools as being an instance of a high level ofcopability. Like ‘usability’, ‘copability’ is a rela-tional term, but it is denoting the relationshipbetween subject and object mediated by the tool.As we noticed above, a thorough usability analysiswill entail a utility analysis, and a copability

Fig. 1

358 E. Boisen et al.

analysis. Now, we want to refine this statementand suggest that these three concepts complementeach other. This way, ‘usability’ could denote afocus on the relationship between user and toolinterface, whereas ‘utility’ could focus on therelationship between the tool’s potential uses andthe needs of a given user. ‘Copability’ could thendenote a focus on the user’s relationship to hisneeds and activities as mediated through the tool.This way, the concept of copability would imply ashift in focus away from (the ideal use of) theclinical information system and towards the prac-tical ‘life-world’ of the user. To give an example: Amedical doctor has a lot of insight into the natureof the object of a diabetic patient. But if thepatient does not agree with the doctor’s view onthe object, and if the tool is suited only for thisobject, we are likely to end up with a case of non-compliance, and the patient will be likely to feelunhappy with himself or the doctor. Asking about‘copability’, we will begin to make these states ofaffairs explicit, as the concept empathises that it isimportant to take into account how the ‘subject’,being the patient, relates to the object.

As a learning tool, DiasNet is not supposedmerely to fit with the actual situation of thepatient, but to help ignite a learning process anda development phase into an improved situation.We believe that a part of the copability enhance-ment of DiasNet can be described as an enhance-ment of the diabetic patient’s zone of proximaldevelopment. To begin with, the blood glucosesimulation may help the patient to better under-stand the physiological dynamics of diabetes aswell as one of the core messages that insulinadjustments ought to be made according to anestimation of the gradient of the blood glucosedevelopment, and not just according to the actualblood sugar measurement, as is common amongdiabetes patients. At a later stage, the patientmight integrate DiasNet into his or her dailydiabetes navigation. In addition, the conceptualmodel underlying the concept of copability canhelp to sketch out a number of strategies how tohandle a situation of non-compliance. The patientcould be ‘educated’ to comply with the doctor’sview of the object. Alternatively, a dialoguebetween the two views could begin.

4. Measuring copability by analysingcoping strategies

We are now going to describe two ways ofmeasuring copability by analysing coping strate-

gies. The first way is based on a longitudinal designlooking for changes in the pattern of copingstrategies for a certain patient with respect totwo general functions of coping. The second way isfocusing on why and when a patient employs acoping strategy, in order to achieve a momentaryestimate of his or her learning level as a DiasNetuser.

Within health psychology, coping is studied mostprominently by Lazarus and Folkman as a responseto stressful situations. In their work from 1984,they define coping as ‘constantly changing cogni-tive and behavioral efforts to manage specificexternal and/or internal demands that are ap-praised as taxing or exceeding the resources ofthe person’ [48]. According to Lazarus and Folk-man, coping strategies mainly serve two functions,either altering the problem causing the distress(problem-focused coping) or regulating emotionalresponse to the problem (emotion-focused coping)[48]. Ways of coping can thus be subsumed underthese two categories. Denial, withdrawal, andhoping would be examples of emotion-focusedcoping, whereas actions like getting information,rationalising, and making practical adaptationswould be labeled ’problem-focused’. Both typeshelp the person to handle a stressor. But whereasthe emotion-focused coping has the effect ofdistancing the person from a stressor, the personis more actively facing up to the challenge with theproblem-focused coping. In relation to diabetes, animportant finding by Lazarus and Folkman is thatpeople are likely to employ emotion-focused cop-ing strategies when they are in circumstances thatthey appraise as uncontrollable [48]. As the con-cept of control permeates the concerns of thediabetes patient [41], we hypothesise that if adiabetes patient experiences an increase in controlof the diabetes, the patient will employ lessemotion-focused coping strategies. This maymake it sound as if problem-focused coping isonly positive, whereas emotion-focused coping isonly negative. However, that account would be toosimplistic. Emotion-focused strategies can be anatural defense mechanism in a shock phase innewly diagnosed patients, or they can be appro-priate as a response to the threat of complications,which it is beyond the ability of the patient toaffect directly [37]. Also, the emotion-focusedcoping strategy ‘acceptance’ can be essential fora patient to take proper care of the disease*/

although we would claim that too much acceptanceof the state of affairs might be a hindrance for apatient to take part in fine-tuning the regime. Inaddition, as anger might be directed towardsdiabetes, thus being a hindrance for a patient to

Evaluation of computerised diabetes disease management 359

care for his or her illness, working on theseemotions might be essential for self-care [49].Thus, emotion-focused coping is appropriate tosome extent, and we view them as symptoms offrustration rather than long-term solutions. At theother hand, we maintain that not all problem-focused coping strategies are advantageous. Pro-blem-focused coping can be so shortsighted that itis dubious whether the motivation is to confrontthe problem, or if the primary function is to pushthe problem away. In the latter case, it is similar tothe distancing effect of emotion-focused coping. Inboth cases, it would indicate a tendency not to usethe contradiction as a source of development, thusadhering to a low level of learning. To sum up withrelation to DiasNet: occurrence of emotion-fo-cused or short-term problem-focused coping indi-cates stressful situations in which the patient isfrustrated or not feeling in control. This we take asindications of lack of copability. On the other hand,occurrence of long-term problem-focused coping interms of daily adjustments of medication in accor-dance with the estimated tendency of the bloodglucose development, and occasional problem sol-ving in case of less severe hypoglycemia, will beindications of a patient feeling in control or makingan effort to learn more in order to gain control.This type of coping will be taken as an indication ofa high level of copability. Thus, if the amount ofshort-term emotion-focused and problem-focusedcoping decreases through the use of DiasNet, or theamount of long-term problem-focused coping stra-tegies increases, this could be an indication thatDiasNet helps the patient in gaining control ofdiabetes, and/or induce a lot of learning. (For thisanalysis, it might be interesting to look into the logfile of DiasNet to analyse what the patients dowhen they encounter a hypoglycemia). A studyfrom 1990 by Berit Lundman [37] on copingstrategies in diabetes is in favor of this hypothesis.Having interviewed 20 IDDM subjects, Lundman wasable to identify a number of coping strategies,which she organised into five different sets orprofiles: Active routinisation, passive routinisation,emotion-based action, ambiguity, and expertise.She found that the ‘winning strategy’, the exper-tise profile, was associated with to the bestemotional and metabolic outcome (HbA1c 7.0%,six subjects, 0.4 standard deviation, S.D.). Thisprofile is characterised by a large representation ofproblem-focused coping and a minimum of emo-tion-focused coping. Interestingly, she found thatthe profile ‘emotion-based action’ was associatedwith the worst metabolic outcome (HbA1c�/9.8%,five subjects, 0.1 S.D.), but also with emotionalwell being. This profile, though, was also asso-

ciated with short-term problem-focused coping(‘subjective estimation of blood glucose’; ‘noregular objective estimation of blood glucose’;‘reasoning based on emotions’). In addition, the‘active routinisers’ were better stabilised(HbA1c�/7.3; 1.6 S.D.; two subjects), but feltmuch worse. These patients, being prone totedium, represented very few problem-focusedcoping strategies (‘routinisation’; ‘objective bloodglucose estimation’), and also few emotion-fo-cused (‘acceptance’, deliberate temporal distan-cing’). These findings suit our hypothesis quitewell. Keeping in mind the pitfalls of diabetesdisease management, we do not want the patientsto be ‘emotion based’, as this might be anindication of a low level of self-efficacy and ofpoor metabolic control. We also do not want themto become ‘active routinisers’, as they are prone totedium. And we do not want the patients tobecome ‘passive routinisers’ because even thoughthey might be well stabilised for some time, theywill not stay stabilised if*/or whenever*/theyhave to break with the routine. What we want isthat the patients obtain an ‘expert strategy’making use of long-term problem-focused copingstrategies through the use of DiasNet. But asLundman concludes, additional studies need to becarried out in order to clarify this picture, espe-cially if we want to identify criteria for quality ofcare and the evaluation of copability by the changein coping strategies in diabetes patients.

In addition to looking into the development incoping strategies, it may be useful to combine theconcept of coping with the stratification of activityconcepts (‘activity’, ‘action’, and ‘operation’) inorder to determine a patient’s development levelas a DiasNet user at any given time. In theformation of functional organs, goals (e.g. learningto handle a tool) can turn into operations. This maybe an indication that the use of the tool hasbecome part of the person’s identity [50]. Accord-ing to Kaptelinin, if operations are frustrated,people often adapt themselves to the new situationautomatically. If goals are frustrated, settingalternative goals requires conscious thought, butis often done without any negative emotions. But ifmotives are frustrated, reflections are thenneeded, people are upset, and their behavior islikely to be unpredictable [46]. We thus hypothe-sise that coping strategies will show up in case apatient’s motive is frustrated, and not if only a goalis frustrated. On this ground, we hypothesise that itis possible to analyse the DiasNet users’ develop-ment level as DiasNet users. We speculate a noviceDiasNet user to have the motive of masteringDiasNet implying several goals among which one

360 E. Boisen et al.

of them might be to be able to enter data correctly,which in turn has several conditions, e.g. beingable to use the ‘mouse’ correctly. At a later stage,we speculate an ‘advanced beginner’ to haveinternalised the first set of goals, e.g. to be ableto enter data correctly with the conditions of beingable to open the right dialogues etc. and instead tohave the goal of entering data on a regular basiswith the motive of learning how to adjust theinsulin according to the simulation. At an evenlater stage, we speculate a ‘competent user’ tohave internalised the habit of entering data on aregular basis with the goal of adjusting insulinaccording to the simulation and with the motive oflearning to keep stabilised by using DiasNet.Ultimately, we speculate an ‘expert user’ ofDiasNet that has the goal of keeping well stabilised,having internalised the ability to adjust insulinaccording to the simulation, and having the motiveof living life as a ‘person’ instead of as a ‘diabetespatient’. (We hypothesise that the latter type ofDiasNet users might only consult the programoccasionally, e.g. in times of having ‘messy’ bloodsugars). If this picture turns out to be correct inoverall terms, and if it is true that people only copein case their motive is frustrated, then we spec-ulate that coping will show up in the followingtypes of use situations: For the novice user, copingwill show up in case of usability problems which theuser views as barriers to mastering the user-inter-face. For the ‘advanced beginner’, coping willshow up in case of usability and utility problems,which the user views as obstacles to learning toadjust insulin according to the simulation. For the‘competent user’, we hypothesise that coping willshow up, e.g. in case of a hypoglycemia or in caseof frequent mismatch between the simulation andthe blood glucose measurements. (And, here, weare particularly interested in finding out whetherthis coping is emotion-focused or problem-fo-cused). These problems might be due to theinherent simplicity of the model behind the simula-tion. Lastly, for the ‘expert user’, we hypothesisethat if such an ‘expert’ encounters a hypoglycemia,this would merely be a frustration of a goal andthus would not call for coping. Instead, the personwould start analyzing why the hypoglycemia tookplace by using DiasNet. This would look like therational behavior of problem-focused coping, eventhough it should not count as an instance of ‘true’coping. Instead, we hypothesise coping to show upif the ‘expert’ experiences hindrances to living lifeas a person instead of as a ‘diabetes patient’, e.g.in the form of ‘acceptance’ of having to useDiasNet on a regular basis. Given this stratificationof learning levels among DiasNet users, the idea

then is to study when and why a DiasNet useremploys a coping strategy, in order to checkwhether this could give an indication of howfamiliar the patient has become with DiasNetand, in turn, if this points to probable types offrustrations. (If a patient does not report anyfrustrations with DiasNet, this might indicate alack of motivation to learn to use it.) Theseindications could then qualify the experiencesusers report on DiasNet as they would indicate towhich extend DiasNet is mediating the relationbetween this patient and his or her ‘object’. Wethus consider the learning level of the DiasNetusers to be proportionate to the copability level ofDiasNet. Also, these indications could becomehelpful in the further development of DiasNet aswell as in order to individualise the teaching of howto use the program. As a final note on this way ofanalysing copability, if our speculations are cor-rect, it will be possible to do momentarily withouthaving to carry out on a longitudinal basis.

5. Discussion

In order to resume, we set out to device anadequate evaluation methodology for the evalua-tion of the usefulness of DiasNet in terms of‘usability’, ‘utility’ and ‘copability’. We explainedthat this analysis would entail clinical assessment,thus relying on the identification on relevantcriteria for quality of care, given the challengesof diabetes disease management, and given thegoal of employing DiasNet as a learning tool fordiabetes patients. Next, as ‘copability’ is a newconcept, we analysed it on the grounds of activitytheory, suggesting that it is relevant most times weencounter a highly usable tool, as we will be likelyto not only form a functional unit with the tool, butalso ‘be worked on’ by the tool in terms of the waywe approach our object. Asking questions whetherthis mediation is fortunate is asking about cop-ability. We further argued that this type of ques-tioning is a necessary complement to asking about‘usability’ and ‘utility’. Then, building on a theoryon coping within health psychology, we presentedtwo ways of analysing the level of copability byanalysing patients’ coping strategies. Based on alongitudinal study design, the first way suggeststhat a decrease in emotion-focused and short-termproblem-focused coping strategies could be takenas indications of an improved level of copability forthe patient, as these coping strategies mightindicate frustrations and feelings of not being incontrol, as well as indicating very limited learning.The other way suggests that asking when and why a

Evaluation of computerised diabetes disease management 361

patient employs a coping strategy at a certain timecould be taken as an indication of this patient’slearning level concerning DiasNet and, in turn, thedegree to which DiasNet mediates between thispatient and his or her object, both as a patient andas a person. The first type of coping analysis mightbe used, as Lundman suggests, to identify apatients coping style in order to individualise thenursing strategy, or as she further suggests, it mightbe used in the identification of ‘winning strate-gies’, which in turn could be taught to otherdiabetes patients [37]. In addition to this, it couldinform the design of a wizard within DiasNet.Coping strategy training is used elsewhere [21],but analysing patients’ coping strategies in order toestimate the effectiveness of a treatment appar-ently is something new, as is the second way ofanalysis which might further inform the ongoingsystems development pointing to problems interms of usability, utility, and model inadequacy.

In conclusion, we find it very fruitful to base ourmethodological considerations on the concepts ofcopability and activity theory for the evaluation ofa CDDM like DiasNet. These concepts has lead to anumber of hypotheses for ways to evaluate theusefulness of DiasNet as a learning tool for diabetespatients, both during ongoing systems develop-ment, during implementation, and in the dailyclinical practice. It needs to be pointed out thatthese evaluation strategies are built on specula-tions on findings in the literature and that furtherstudy needs to be carried out in order to concludewhether the metrics would in fact be valid indica-tions of copability when using a CDDM for theenhancement of patient expertise within diabetescare.

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