Electronic record shapes how disease is defined

In both practices, chronic disease management was organised so that each of the patient's chronic diseases resulted in a different occasion for care, often with a different nurse using a different template. This arrangement assumed that patients (and nurses) could distinguish features of one chronic disease from another in the face of multiple morbidities. A common way for the nurse to frame the purpose and scope of the consultation was to use statements such as “how have things been from the diabetes point of view?”, or more simply “so…asthma review”. To use Goodwin's terminology, these questions do the work of establishing what is ‘figure’ (relevant, salient) and what is ‘ground’ (less relevant to the enquiry).43 Occasionally this separation of the patient in to different chronic diseases was identified as potentially problematic. An example is shown in box 1.

The nurse's statement (box 1) “I know you have a lot of other things going on but we've called you in to look at your heart” performs two contrasting functions. On the one hand, she acknowledges the difficulty inherent in separating out his ‘heart’ problem from his other illnesses and wider experiences, making it legitimate for the patient to frame his heart problems in a broader context. However, in the next part of her utterance “but we've called you in to look at your heart”, she exhibits what discourse analysts call a ‘scale jump’.44 She shifts quickly from an individual, unique ‘here and now’ framing (“I know you have…”) to a more general institutional framing (“we've called you in…”). This shift indexes what is most relevant and implies certain limits around what may happen in this consultation.

The patient responds by juxtaposing his prime concerns with the ‘core’ concerns of this clinic. First, he rarely uses his angina tablet—but only because his mobility problems outweigh his angina. Then his concern about simvastatin moves swiftly into a complaint about his hearing aids. Neither mobility nor deafness are pursued by the nurse (or recorded on the electronic record); they are ‘unremarkable’ problems in this (heart) clinic. It is not simply that these concerns remain unexplored because there is no field dedicated to them in the template. More subtly, the practice of using a template shapes how disease and illness experiences are made sense of in this environment.

The template is not merely organised around a single disease entity, but around a particular version of this disease, reflecting the assumptions of those responsible for designing the template. For example, diabetes in all its complexity is rationalised in terms of a series of codes, for example, weight, units of alcohol, blood pressure, lower limb pulses (present or absent)—with minimal (if any) supporting a free text. The primacy of the ‘measurable’ was often made explicit in the consultation. For example, 3 minutes into a diabetes consultation, one nurse faced the computer screen as she announced “CAN WE DO a few measurements today then just to see (0.2) uhm where everything is”. Here, not only are “measurements” equated with what is to be recorded on the electronic record, but it is implied that they will reveal “everything”. Another nurse—in an asthma clinic—remarked (as a patient moved to leave) “Hang on a minute. I need to pop these in here (turning to computer)…this is a whole set of measurements which tells us where your lungs are now.”

Nurses frequently engaged in the kind of activities which characterise bureaucratic encounters.45 For example, deviations from the institutional agenda were brief; patients’ talk was interpreted in direct relation to the template (an example of an institutional script, or a particular way of accounting for practices);46 and talk was steered in particular institutionally relevant directions. For example, in table 1, from a diabetic clinic, the nurse anticipates an upcoming field in the template (‘Depression Screening’). At the time, the QOF required case finding for depression among diabetic patients, using two standard questions (During the last month have you often been bothered by feeling down, depressed or hopeless? During the last month, have you often been bothered by having little interest or pleasure in doing things?). Although we observed no examples of this precise wording being used, nurses often incorporated their own versions, enquiring about the ‘mood’ or feeling ‘down’. The transcript in table 1 shows the nurse's handling of these questions. In this extract she refers back to a brief account of whiskey drinking, which the patient had offered about 7 min earlier:

Patient: “well I look a- I look after myself I drink whiskey to counteract the cigarettes y'know”

Nurse: “do you (laugh) a whiskey a day?”

Patient: “yeh”

In table 1, the question “Does the diabetes get you down Mr C?” is met by a relatively long pause (in conversational terms). The patient frowns and says he gets ‘bored with life’ widening the perspective towards his broader life experience. The nurse responds with a question which invites elaboration, but simultaneously refocuses on a narrow diabetes-relevant cause (the food). This is an awkward moment and prompts the patient to withdraw his gaze, laugh ironically, lift his jumper and say, quietly “ah well °never mind°”—communicating disappointment. A brief but poignant narrative unfolds, painting a picture of a man who has reluctantly made lifestyle changes, restricting his enjoyment of life. Being a ‘drinking man’ was part of his (male) identity and conjures up a social life around alcohol (“when I had to give up the beer I had to give up an awful lot of other things:”). At 19.11 the nurse slows and quietens her speech, perhaps encouraging elaboration, but the narrow biomedical focus of the template items is restored from 19.13 onwards, the patient justifying his whiskey by reference to its minimal ‘sugar’ content, which the nurse recontextualises into even more ‘scientific’ terms—‘carbohydrates’ and ‘volumes’.

After the patient leaves, the nurse corrects the ‘alcohol’ record she had entered earlier. She replaces ‘14U’ (copied from the previous year's entry in the template) with ‘7U’. “A whiskey a day?” becomes ‘one unit’, in what is an uncritical shift from an unquantified volume of whiskey to an (apparently) quantified one. The complex interactions between the patient's diabetes, his identity as a ‘drinking man’, his losses and his ‘boredom with life’ are reduced to an institutional account which reads simply (and potentially misleadingly): “Depression screen—‘Y’; Alcohol—7 units”. The construction of particular versions of diabetes contributes to constructions of particular kinds of patient, discussed further below in this article.

Electronic record shapes how care is delivered

The electronic record shapes care delivery in several ways. It is often the prompt to care, defined by ‘overdue diary entries’, overdue ‘medication review’ dates and audits by a tool called ‘Population Manager’ identifying patients with missing QOF data (‘we've called you in’—box 1). Patients attend regularly, or may sign disclaimers, in a process which is institution-led, rather than patient-initiated. For example, in one practice letters of invitation to the ‘cardiovascular check up’ were signed off by Practice Administration (not a clinician) and couched in institutional terms (“We are now regularly reviewing all patients who have angina or who have had a heart attack. As a result of this we would like you to attend a health check…(further appointment details). There is no need to be concerned about this appointment we are just striving to maintain the standards of care we provide for you.”) The potential benefit to the patient is implicit and abstract rather than explicit and specific. For example, the justification for the check is presented only in terms of maintaining the standards or a regular procedure. Despite receiving written invitations, patients often remained confused about why they had been summoned (“What do you want to see me about then?”).

The requirement for data was—occasionally—the primary reason for the consultation. In one cardiovascular clinic a patient began by apologising for telephoning 3 days earlier to check whether her review was necessary. She had been reviewed in the hospital's cardiology clinic the same week. The nurse responded by explaining that the practice is not always sent the information by the hospital “and we have to have our records up to date.” What is interesting here is not so much that the patient may well have had to attend two very similar appointments in 1 week, but that the need to keep the record ‘up to date’ is presented as an adequate and a sufficient reason for the appointment. The ‘need’ for data seemed to outweigh any need that this particular patient felt (or necessarily had) for care.

These examples illustrate that while on one hand the electronic patient record facilitates the regular recall and review which are critical to a high-quality chronic disease programme,47 there are potential pitfalls to a highly automated recall system, especially if it is disconnected from the wider set of relationships within which care is delivered, or if the rationale behind it does not make sense to individual patients.

The electronic record also shapes and constrains how the consultation unfolds moment-by-moment. Chronic disease consultations often (though not always) took a linear and standardised format. Consultations tended to start and finish with the same questions, and focus on information gathering and documentation. One consultation was interrupted on two occasions by the patient standing up to take his leave, the nurse advising “You can't go yet (laughing) … we're not finished yet”. It was common for nurses to face the computer screen as they explained the reason for ‘calling the patient in’, and the ‘orderliness’ of the clinic was often made explicit (eg, “We'll start with your blood pressure”). Table 2 shows a detailed transcript revealing this institutional ordering in an asthma clinic.

In this example (table 2), the nurse frames the consultation as an assessment, first to see how “your asthma's doing” (an assessment of the asthma) which she then reformulates as “what you're doing with it when it's good, what you do with it when it's bad” (an assessment of the patient's practices). This metaphorical separation of disease from patient was common. The use of the word assessment sets an evaluative tone and anticipates an enquiry which incorporates smoking status, inhaler technique, concordance with medication and peak flow measurement. The nurse emphasises (1 : 08 and 1 : 19) that it is really or very straightforward, and at 1 : 13 she counts on her fingers a three-part list, flagging the linearity of what is to follow and setting out what she and the patient should achieve. It might be interpreted as reassurance, but this is a reassurance about what he may expect of the structure of the clinic, not that his specific concerns will be addressed. Following this data extract, the nurse gestures towards the computer as she explains “What I've got here is some questions that I—I need to ask you…they're fairly straightforward ones but what they tend to do with is that they will flag up whether there >actually< we have got what w- what I would call breakthrough symptoms.” The institutional imperative is clear (“I need to ask you”) and she again highlights the straightforward nature of the task, as she identifies the template as the origin of the questions. As the patient begins to demonstrate his inhaler use, he coughs loudly 5 times, beats his chest demonstrably with his hand and announces: Patient: “I do suffer very badly from phlegm in the mornings…which I presume is part and parcel of having asthma.” Nurse: “It can be (.) yeah which (0.4) anyway I—we'll talk about that in a minute…we'll do the inhaler first.”

Despite weaving his own concerns into the assessment of ‘inhaler technique’ and using elaborate gestures for emphasis, the nurse steers the patient's activity back to the institutional script and does not revisit the issue of the morning phlegm. She later goes on to enquire specifically about asthma symptoms, but not until almost 16 min into the 19 min consultation…when prompted by a template field reading ‘night symptoms’.

Electronic record shapes what it means to be a patient

The template contributes to the construction of ‘institutional’ versions of the patient and may make it difficult for professionals to retain a perspective on the unique individual. One nurse said that the structure can make it difficult to take a step back—that some patients return annually for asthma checks even though she wonders whether they are definitely asthmatic at all (“once they have acquired a diagnosis they just keep coming back”). While the asthma clinic may seem as a reasonable setting in which to review a patient whose diagnosis is provisional or uncertain, the template does not handle such ambiguity well, and the recall procedures behind it can lead to the ‘production’ of consultations and the production of patienthood (the ‘asthma patient’). There is a considerable scope for unhelpful, potentially incorrect labelling of patients. An example is shown in the ethnographic field notes in box 2.

Putting aside the absurdity that a 2-year-old has a Read code for ‘Never smoked tobacco’ in his record, the example in box 2 shows the disparity between the individual narrative that was built in the clinic and the ‘minimum data set’ in the institutional account.48 It also shows how the expressed ambiguity about the asthma diagnosis is wiped out (and not alluded to) in the record—numerous asthma Read codes are entered. While this is sure to result in regular invitations to the clinic, the institutional ‘truth’ bears little resemblance to the reality it seeks to record. The contrast between the mother's relief at the uncertainty of the diagnosis, and the certainty which was constructed in the record is striking. More subtle, transient moments of ambiguity, which required the shaping of patients’ accounts into an inflexible (often binary) categorisation, were common (eg, a patient's hesitant ‘not really’ becomes ‘no’).

Electronic record shapes what it means to be a clinician

The opportunity for nurses to develop new areas of expertise in chronic disease management is frequently described in terms of ‘role-expansion’, ‘professional empowerment’ or Liberating the Talents.49 As the disease areas covered by the QOF have increased, so has the variety of nurse-led, disease-specific consultations on offer. In this study, nurses were often defined by chronic disease specialty. For example, in one practice, photographs of the nurses in the waiting room had their disease-specific expertise listed alongside (eg, Christine—Asthma). One practice newsletter read: “Our practice nurses receive special training to monitor people with chronic diseases and to carry out many procedures independent of doctors.” This entry not only constructs chronic disease as ‘nursing work’ but describes a ‘monitoring’ role which sounds different to the ‘care’ we may traditionally associate with nurses looking after the chronically sick. With nurses thus defined, GPs took on the role of ‘trouble-shooter’ or consultant,50 called upon when more complex problems arose. In one practice, healthcare assistants conducted cardiovascular and hypertension reviews. Although able to gather information needed to inform chronic disease management (eg, blood pressure and details of smoking) healthcare assistants are not clinically qualified. This ‘redistribution’ of chronic disease management to the least qualified (and least costly) team member has been previously described and shifts the meaning of the term ‘management’ towards one of the managing data rather than patients.18 ,50

The extensive use of templates as a way of delivering chronic disease managements was rarely questioned. The little that was said was broadly positive, and echoed the ‘monitoring’ perspective conveyed in the newsletter (“templates encourage us to get to grips with the management of microalbuminuria in diabetes and take a more aggressive stance towards blood pressure control”). Several nurses suggested they relied on templates and might easily forget things without them. However, one nurse said she tried to avoid relying too heavily on the template, as doing so tended to result in her “losing her train of thought”; she preferred to jot notes on paper to add to the template later. Some specific difficulties were voiced, such as the perception that important things may not be documented “because there is nowhere in the template to put it”, and “you sometimes become so absorbed in the template that you can miss what is right in front of you in the patient.” On one occasion when the computer crashed midway through a cardiovascular check, the nurse apologised in advance (“I'll have to do it a little out of order because I've no computer”) and again later (“I'm sorry it's been such a higgledy-piggledy consultation”). This incident highlighted the extent to which her work had become interwoven with technology use. It seems unlikely that this senior, experienced nurse could not do a cardiovascular check without the prompts before her eyes. Rather it was because her embodied practices had become so finely tuned to incorporate the technology that to conduct a consultation without it had become almost impossible.

In one practice, an information technology manager was responsible for developing and maintaining computer templates, and he identified templates as a fundamental characteristic of quality care. A private company who had recently taken over the management of a local ‘underperforming’ practice was employing one of his GP colleagues to improve practice systems. He explained that “they were very impressed with our templating”; the doctor had duly provided copies of their templates for the ‘underperforming’ practice. The integration of templates (and a new word—templating) was presented not only as a feature of good practice, but as potentially constitutive of good practice in an organisation which was otherwise failing—a transferable ‘good’.

The template contributed to redefining ‘professional vision’43 by encouraging particular ways of looking, categorising and sense-making, fostering a particular orientation to the world, captured in Goodwin's words: “When disparate events are viewed through a single coding scheme, equivalent observations become possible” (ref. 43, p 608). For example areas of institutional relevance (such as those which attract points in the QOF) were often privileged over patients’ more immediate concerns. The template shaped not only what was relevant to record, but also how this was recorded. For example, symptoms were recorded as either ‘present’ or ‘absent’ when patients described a much more complex reality. The clarification of a patient's experience ‘in general’ was sought more readily than ‘particular’ experiences. The template brought new definitions of nursing and GP work, new conceptualisations of practice and new appreciations of what constituted ‘good’ practice.

Using the template creatively

Some nurses displayed exceptional creativity in how they used the template. We illustrate this by reference to tables 3 and 4 which shows two extracts from a single consultation in the asthma clinic. In this consultation, the patient can see the screen if he turns his head slightly, but the nurse does not start to complete the template until 10 min into the consultation. Until then, she faces him across the corner of the desk, occasionally jotting notes on a paper placed between them.

The nurse uses several strategies to elicit a narrative at the outset (table 3) beginning with an open invitation “tell me …” The word ‘tell’ invites a story, and she shifts into a posture displaying readiness to listen, moving her chair away from her desk (and the computer and her notes). The patient hesitates and there are some relatively long pauses in his telling, but she refrains from filling these with anything other than tokens of attentiveness. She mirrors the patient's laugh and shrug of the shoulders from 1 : 10 to 1 : 15 in a way which is effective in encouraging him to tell some more.

She goes on to encourage the patient to describe his inhaler use, and learns that he had recently woken up short of breath. His inhaler had not worked well and he could not get back to sleep. She makes occasional notes, describes aloud what she is noting, then summarises the story which the patient confirms. Having established some confusion over when he should be using each of his two inhalers, she uses a picture of the respiratory tract as part of her explanation, saying “I think if you know how the drug works on your body it makes sense how to use them.” She goes on to check his height and peak flow rate, then joins him (“let's have a look”) as they cluster around the peak flow metre, each holding one end of it. The nurse says that it was not very good and that he could do better—which makes him laugh—then she demonstrates how to do it. After his second attempt they again cluster around the peak flow meter (N: “tha::t was a bit bette::r …LOOK four hundred a::nd eighty.”). After a further attempt the nurse says “Excellent. Well done. What we got? There we go. LOOK five hundred and thirty that time.”.

The nurse and the patient are fully involved in this activity, in Goffman's sense of being both cognitively and affectively engaged.23 The nurse's talk is inclusive (let's, we, what we got, there we go) and her bodily conduct encourages a joint engagement in reading the peak flow metre. Having already created a collaborative environment, she turns to the computer for the first time almost 10 min into the consultation (table 4, 10.37).

Again the nurse uses inclusive language as she orients towards the screen, inviting the patient to look. Between 10 : 39 and 10 : 43 she makes a deliberate show of navigating towards the asthma template. She enters his height, points at the screen, makes a joke. By making the template deliberately visible and socialising around it she retains control over the progress of the consultation and legitimises her need to attend to some institutional work. But by involving the patient in the recording activity (not literally, but through making it a shared endeavour and using much inclusive language) she effectively maintains a patient-centred approach while briefly attending to institutional requirements.

She invites further collaboration in making the template entry at 11 : 14 onwards (five thirty was your best wasn't it). The patient does not initially respond although he continues watching the screen. The computer automatically displays his ‘predicted peak flow rate (peak expiratory flow rate (PEFR))’. The nurse evaluates the measurement as a “little bit under...but not too bad”, minimising any sense of trouble. But the mismatch between his ‘actual’ and his ‘predicted’ result prompts the nurse to reformulate her question to one which is more demanding of an answer (“was five thirty your best?”). When the patient hesitates and suggests it may have been higher, the nurse suggests a recheck. This confirms the measurement, but the act of repeating it displays a collaborative approach. Neither the nurse nor the patient's account is taken as ‘truth’—a remeasurement settles the matter. In summary, this nurse is successful in eliciting a narrative, while also making the bureaucratic requirements deliberately visible. She skillfully minimises the distance between ‘individual’ and ‘institutional’ framings of the patient. 31

A different nurse described herself as a paper person and yet also used the words template-driven to describe her work. She said she had found it impossible to combine getting through it all with what she regarded as a patient-centred approach. She had negotiated with her employing doctors that her diabetes appointments were 30 min long (instead of 15 min) “otherwise I would have just been completing the boxes with no time for the patient”. In this statement she highlighted a perceived gap between the task of being ‘for’ the patient and the demands of the template. This nurse went to great lengths to minimise her need to look at the computer during her consultations, seizing brief opportunities as they arose (eg, as patients removed socks). She often placed her left hand on the patient's arm as she rotated her chair to look at the screen, keeping it there as she typed with her right hand—an awkward posture, but one which allowed her to maintain a physical connection to the patient as she attended to the template. She always went into surgery 30 min before her clinic was due to start, to prepare a written page of notes for each patient in her notebook. She meticulously studied the record of each patient she was anticipating, and copied blood results and other information she thought she may need to refer to. She ‘knew’ the template, and would frequently anticipate the next field in the template before displaying it on the screen, weaving it into the consultation while keeping it relatively ‘invisible’ to patients.

In sociological terms, this particular nurse had internalised the template—working with it in a symbolic sense, but marginalising it from her embodied activity in the interaction. Her performed identity was as a ‘paper person’ who preferred to be ‘for’ the patient in this new template-oriented ‘field’51 ,52 of practice, but the template was indeed central to her practice (she was ‘template driven’). She was ‘driven’ in the sense that she ensured that she completed it—as demanded by the institution—but also ‘driven’ to find creative ways of working around it. It had become part of a new professional habitus,51  52 which helped to define her normative behaviours and expectations. She took the burden of managing the individual/institutional tension, but in this case it came at an opportunity cost to herself in terms of personal time, and a financial cost to her employer (since her consultations were now taking twice as long).

These examples of exemplary practice are important evidence that the technology is by no means deterministic of practices, but that there is always a scope for practitioners to work with technologies in ways which preserve the ‘relational’ aspects of care and maintain full involvement with the patient.53 The electronic record shapes but does not make; it constrains but does not prohibit; it makes possible but does not necessarily insist.