Problems Encountered in Electronic Health Record Research K. Neil Jenkings Sowerby Centre for Health Informatics at the University of Newcastle, University of Newcastle-upon-Tyne, Tel: (0191) 243 6181, Fax: (0191) 243 6101, neil.jenkings@ncl.ac.uk Abstract This paper draws upon experience gained while conducting research into Electronic Health Records in the Durham and Darlington Electronic Health Record Project (DuDEHR) of the Electronic Records Development and Implementation Project (ERDIP) set up by the NHS Information Authority (NHSIA) in the U.K., and follow-up work for the Strategic Health Authority of County Durham and Tees Valley (CDTVSHA) in preparation for the Integrated Care Record Service (ICRS) of the National Programme for Information Technology (NPfit). As a starting point this paper gives a description of the Electronic Health Record environment in the context of the developments above seen from the perspective of a social researcher. The focusing being upon the need for a greater understanding of the organisational and interpersonal complexity of health and social care organisations and their operating environments in the development and implementation of EHR ‘solutions’. This paper then suggests that there are at least five fundamental and interrelated problems hindering quality Electronic Health Records research data: 1. The Problem of Fitness for Purpose; 2. The Problem of Modelling; 3. The Problem of Previous Research Strategies; 4 The problem of gatekeepers; 5. The Practical Problem of Data Representation. The discussion suggests the possible need for a compromise solution in this research area. Introduction Like much of the social world health (and social) care has become increasingly complex and equipment dependant. Medical practice has moved from the patient at home attended by a physician using a limited number of medicines and medical implements, to institutions where inter-agency service providers are increasingly dependant upon high-technology equipment, including medicines. This introduction of communications and information technology, while having had a number of successes, (e.g. [1]) has nevertheless often been problematic, either due to resistance from intended users, or the failure of the technologies to support or replace the existing work practices they were intended to facilitate, or both. Such failures can be, and have been, costly not just financially, but also in terms of healthcare provision and it is recognised that “human factors, particularly those linked with the activity of healthcare professionals, have to be carefully studied before any development of an EPR into a speciality domain” [2]. As the premise of this workshop recognises the success record of Electronic Patient Record (EPR) projects in particular has been “patchy” and that this is in part due to an under-estimation of the complexity of the ‘problems’. The scope of Electronic Health Records (EHR) projects is even greater, promising new ‘affordances’ via electronic documentation and communications networks (e.g. [3]). So the EHR is, at minimum, seen as ‘replacement of paper’ leading to a health (and social) care environment in which the patient/service user experiences a seemingly seamless service, while overcoming of the ‘limited affordances’ of paper-based technologies although some studies have found equivalence between the two technologies [4], but joint record keeping has shown that the maintainance of paper and electronic records in tandem leads to inconsistencies [5], although recognition has been made of the ‘positive affordances’ of paper-based technology (e.g. [6]). This paper attempts to highlight what some of the problems for researchers, other than purely technological capabilities, are that can be encountered in such electronic health records research. EHR Scope Initially it is worth describing the scope and potential context of the current electronic health records projects, particularly the NPfit. Increasingly the scope of EHRs is that where the intended user group is not a single department, or hospital, but a large multi-disciplinary health and social care environment. An environment whose constituent members and their organizational bodies are not under the management of a single authority, but are Health organisations (Primary Care Trusts, Secondary Care Trusts and Strategic Health Authority bodies) and Social Care organizations (Local Government, Charity organizations, private care groups and Multidisciplinary groupings). This is not to ignore the role of the service users and any representational bodies they may have. Further, these differing bodies have both formal and informal structures and working patterns and communication ‘structures’ that facilitate (or hinder) the overlapping (and frequently coordinated) work that their remits require them to provide, as well as additional local initiatives and service provision. In addition to this, throughout this ‘environment’ are legacy systems, which are not confined to communication hardware and software, but also include formal and informal work organization, personnel, organisational memory, previous initiatives and experience of work collaboration, and current pilot initiatives not sponsored by Electronic Health Record projects. Just as medical care has moved from the home to the hospital, at the same time, social care has also moved from the in-home family oriented activity to the professionalized service provision provided by local government and other service providers, such as charities. Recently, this area, while having had on occasion close contact with the medical profession, has actually started to be incorporated into the remit of the medical organisation service providers, e.g. mental health social workers are now working in combined teams with community psychiatric nurses and their move from local government to NHS employment appears imminent. This move can be seen as part of the medicalisation of social care, but the reasons may not just lie in disciplinary hegemony, but also in the rationalisation of accountability and associated account keeping and data sharing. Indeed, the scope of the £2.3 billion pound ICRS programme envisages the data sharing across health and social care, which is in some ways an inevitable result of Care Pathways for various ‘conditions’, e.g. mental Health, old age, coronary care etc., pathways which require the sharing of information across groups with both the health and social services professions. Social Care is the ‘Cinderella Service’ of the two professions but within these two, EPR/EHR implementation has itself been uneven. While health has adopted these systems more readily than social care – seen as the ‘Cinderella’ service of the two – within health it has been very uneven both within similar sectors and across geographic locals. Primary care has generally faired better than secondary care, in large part related to the relative complexity of the social organisation of healthcare in each and the limits of the previously available technology [7]. Although just because the doctors in hospitals do not use the computers as much as general practitioners, it would be wrong to assume that computer record use is ‘light’ in hospitals. Indeed much of the computer record use in hospitals is performed not by the doctors but by their support staff, both nurse and administrative. So a great deal of the difference in computer use is explained by different working practices in each type of organisation, as well as the structure and function of each. Meanwhile, least we forget, in both health and social care paper records are still employed, often as the main system, and on occasion the only system. So at a most basic level there is much divergence in the implementation of electronic record systems both within and across the health and social care organisations: a situation which is yet further compounded by the fact that the systems suppliers, within these environments have been, and are, numerous – and the solution systems incompatible. One of the results of this is that organisations such as hospitals have different record keeping systems in each of their departments, that more often than not, cannot communicate with other systems within the same hospital. Although, most hospitals do have a single patient administration system, departments will frequently run their own systems instead of, or alongside, the hospital system: since the latter not necessarily have the functionality to support the requirements of individual departments. Such a situation is a cause of time-consuming repetition of work as both systems, often alongside a paper based system, are kept up-to-date. In addition to this situation, the continual reorganisation of the NHS is frequently joining, through reorganisation, professional groups and work units who have developed their implementation of electronic records in various ways and various systems, which cannot readily share their electronic records. This is not just a question of legacy systems and their lack of interoperability standards, but is fundamentally about dissimilar, but preferred, solutions to similar problems, which each respective group may have a great ‘attachment’ too. The reasons for such an ‘attachment’ may be numerous, e.g., they may have had a part in the design and implementation of their respective systems, and invariably they have put a lot of effort into enabling the transfer of previously paper documents into electronic format, often at a great expense of money and effort, frequently with the very recent past. Consequently, the mere mention of change can be greeted with intense dismay. This is without even considering their actual satisfaction, or not, with the transfer of records from paper to an electronic format. So, the background to the introduction of EHRs is the problematic one of the EPRs, writ large. The current environment in which EHRs are envisaged as facilitating such initiatives as crossdisciplinary Care Pathways is characterised by differing levels of existent paper and electronic record keeping, complicated by differing organisational working practices, where there is attachment to current practices for a number reasons. The above is a partial description of the environment that EHRs projects are to work in, this paper attempts to illustrate some further possible problem areas that will be encountered in a EHRs research and implementation programme. 1. The Problem of Fitness for Purpose Heidegger has contrasted equipment that is “ready-to-hand” that tends to disappear, with equipment that is “unready-to-hand” which becomes problematic and the object of attention. In this contrast “ready-to-hand” refers not to proximity, but to unproblematic usage. A famous example used by both Wittgenstein and Merleau-Ponty of “ready-to-hand” equipment disappearing, is the case of the blind man’s cane. The cane is an object that can be picked-up and described, yet when it is used by the blind man it disappears, in the sense that it is the curb, for example, which the blind man is aware of as the object of issue and contact. Conversely, when an item of equipment is “unready-to-hand” the opposite happens and “At such times, inspection and practical problem-solving occur, aimed at repairing or eliminating the disturbance in order to ‘get going again’. In such times of disturbance, our use of equipment becomes ‘explicitly manifest as a goal-orientated activity,’ and we may then try to formulate procedures or rules.” ([8] p53) In relation to electronic health records we can note two issues in relation to ‘ready-tohandness’: firstly, that the uses of electronic records in the activities of healthcare workers are not (or at least should not) be ends in themselves; and secondly, that when the electronic records’ ‘ready-to-handness’ becomes problematic in some fashion, abstract formulations of the activity necessarily arise. The importance of these two aspects should not be understated, if we are to help conceive, design and deploy electronic health records that are “ready to hand”. Yet to fulfil the first of these, that electronic records should not be ends in themselves, we have to provide, and give voice to, accurate and detailed descriptions of the work that the records are to support and how this can be facilitated further. Unfortunately, however, we would argue, we are already a prisoner of the second problem, the abstract formulations of these activities. The reason for this being that we do not arrive at a pristine environment devoid of previous technology implementation programmes, or even electronic records programmes. Instead, more often than not we arrive with legacy systems in place and, more significantly, legacy rationalisations of why those systems do not operate in the desired fashion. These rationalisations exist not only on the ‘shop floor’, but throughout the host organisation, the systems design and manufacturer organisation as well as the NHS bureaucracy. The problem being their ability to set the agenda for EHR requirements and design 2. The Problem of Modelling Simply put, models that do not adequately reflect the everyday world of the health service professionals whose work and experiences create, and are themselves constituted by, the practical locally constructed health service world. Attempts to objectify and rationalise complex relationships and communities of practice in enterprise models as some sort of simple linear process, devoid of contextual detail, inevitably run a high risk of producing products, which have used that data to represent the reality they are to provide for, where “readiness-to-hand” is absent. Further, the electronic health records that embody these depictions, run the risk of producing ‘reality disjunctures’ on their intended users due to their ironicising effect. As Pollner states: "… the ironicizing of experience occurs when one experience, tacitly claiming to have comprehended the world objectively, is examined from the point of view of another experience which is honoured as the definitive version of the world intended by the first. The irony resides in the subsequent appreciation that the initial experience was not the objective representation that it was originally purported or felt to be." ([9] p412) So in the case of healthcare what we may have is a practical encounter between a patient and a healthcare professional, e.g. doctor-patient, nurse-doctor-patient, etc. which involves the practical and locally negotiated activities of registering the patient, assessing their condition, discussing the practicalities of their care, treatment, discharge and follow-up care, etc. The practical activities of these sorts of encounters vary from patient to patient, doctor to doctor, nurse to nurse, illness to illness etc. and combinations thereof. In fact every occasion of healthcare is, in detail, unique. However, the systematic modelling of these activities ironicises the actual unique instances which the models represent, and then these ironicisations embodied in protocols of electronic health records are fed back into the ordinary world of the healthcare professionals as versions to which their activities are now accountable. An example of a problematic attempt to “impose a new reality, producing uniformity in the thought and behaviour pattern of experts” is provided by Sicotte et al. [10]. These models become, at least for some, ideal versions of healthcare provision, ‘objective’ rules to ‘good practice’, e.g. ‘gold standards’, and thus not only what good practice should be but what it is accountably held to be. The disjuncture between the “ideal” and reality may be so significant that it generates significant dissonance and conflict, leading to abuse, misuse and disuse of tools and systems. In many circumstances, however, adaptation and adjustments take place in the face of minor disjuncture. 1 In either case inadequate description can lead to “unreadiness-to-hand” products that are not fit-for-purpose. 3. The Problem of Previous Research Strategies. As has been alluded to with regards hospitals, but which is equally applicable to Primary Care, these organisations are usefully conceived of as containing a number, a large number in the case of hospitals, of worksites [11]. Since these are the worksites that the electronic health records systems are to support, it is imperative that we have detailed information as to what occurs at these sites – and why. By these activities is not just meant the ‘official’ activities that can be obtained from some ‘service provision’ document, but the actual activities that occur in the provision of services. With the ‘why’ question not being predetermined by some reference to ‘official’ or ‘formal accounts’ whose versions are designed to fit in with service provision protocols. Rather, the day to day locally contingent activities that frequently do not occur in official accounts: locally contingent activities that are also poorly served by quantitative representations, where they exist, of these worksites. Quantification, irrespective of epistemological considerations, is a dogmatic research practice unfortunately present in the majority of research carried out within, or upon, the NHS. This usually takes the form quantitative research, either on primary or secondary data. If it is on primary data this has usually been collected through questionnaires (social surveys, large and small), if it is secondary data this has usually been collected for auditing purposes of one sort or another. These research techniques have their uses, but like all research techniques have their limitations. A whole industry has grown up providing quantitative services to, and within, the NHS. Unfortunately, this has also resulted in the limited amount of qualitative research tending towards the (frequently spurious) quantification of data collected by qualitative methods, substituting detailed qualitative analysis with inappropriate quantitative analysis. This is not to suggest that quantitative research methods do not have a ‘role’, or that when 1 See Berg [12], for a discussion of the convergence and divergence of rational models of clinical processes, as embodied in decision support and protocols, and the realities of clinical practices. research was actually done into ‘user requirements’, such data collection techniques were necessarily poorly applied. Rather, that potentially inappropriate methodologies for the technology development design and implementations process are often used, and more specifically, that they did not include ethnographies of the work place activities where the technologies are to be employed. Consequently, we suggest, the design and implementation activities have ‘relied upon’ non-existent or inadequate ‘gloss’ descriptions of the actual activities of healthcare professionals they wish to support or transform. The problem being that the preference for quantitative strategies has now become a legacy of previous strategies. 4. The problem of gatekeepers Health issues can be sensitive topics for patients, the role of guardians of the privacy of the patient or service user being that of the healthcare professional. Further, the healthcare professions themselves have certain rights of privacy, usually supported by their own professional bodies. Additionally, healthcare organisations are extremely hierarchical both clinically and managerially, access to undertake such activities are usually done through the involvement of the various gatekeepers such as the Executive/Managerial Committees, Ethics Committees, Royal Colleges and Union Representatives who speak ‘on behalf’ of their constituencies including patients. The problem however is that such gatekeepers, under the guise for protecting their constituencies, particularly patients, often have a determining say on what the ‘level’ of access to a research environment will consist of: often to the extent of determining the type of research methodology and methods that will be ‘suitable’. The problem of such bodies is two-fold: firstly, frequently they have more ‘important’ concerns, considerations and agendas than the successful design and implementation of the electronic health record system. Indeed, rather than the day-to-day use of technology by their members in the provisions of healthcare, they are concerned, and even directly tasked, with broader and often more ‘political’ (in its broadest sense) concerns. The ramifications of this are that they can not only prevent and limit levels of access, putting numerous limitations on the access and data collection methodology resulting in inadequate methodologies, usually quantitative. But equally significantly, they will decide that they, or designated others, are capable of answering the research questions themselves believing themselves, to have the knowledge necessary for the design and implementation process. This is not necessarily only due to motives such as protecting a domain from inquiry, or even merely an over estimation of their own knowledge, but actually a misunderstanding of the information requirements for the design and implementation process – often a result of previous experience of poor data collection and design practices. The practical consequences of this can be that: the research method adopted will be in part determined by their granting limited access to the research site; and that the methodology will involve using these (and/or similar) individuals as informants, often through interviews. Such informants are often not even representative of the actual users of the technologies in question, but the managers and employers of those who will use an electronic health record, a selfselected group, e.g. hospital managers, department heads and General Practitioners. Who speak on ‘behalf’ of (but in effect, instead of) their employees, i.e. those who handle much of the inter-healthcare organisation and patient communication, and talk authoratively about work practices which they do not do and often have never done. 5. The practical problem of data representation An important point to make here is that the process model approach is almost a universal standard for description of the activities of healthcare professionals for NHS managers at all levels, and consequently a major resource for the designers of electronic health records technologies. This representational preference is perhaps because it reflects the perceived linear nature much of healthcare activities, and this preference of representation may be one that researchers do need to accommodate to some degree. However, this does not mean that the process models need to be ‘information poor’, instead they need to be information rich, because there is a need for designers and managers (as well as clinicians and their support staff) to have a much better understanding of the various practical work activities - and how to support them. These two ‘requirements’ are not necessarily incommensurate, but: firstly little research is undertaken to get rich descriptions of the work activities to be supported and developed by electronic health records. And secondly, that when such research is undertaken the representation of this research tends to be in the form prose documentation – unless, as mentioned above, it gets spuriously quantified. The problem with prose representation of data and its analysis, being that it requires the reader to have both the time and skill to understand the text. However, time is a problem as ethnographic descriptions can often be not only very detailed, but consequently quite lengthy as a consequence; with the result that the readership for such accounts can be quite small. Secondly, such ethnographic accounts can be ‘inaccessible’ to those who ‘need’ to read them as they are written in a structure and format of a discipline other than their own; in essence this can deprive the reader of the ability to decipher the document, or at least increase time in which it takes them to do for a document of comparative length in the own discipline. This a real issue since, we suggest, when the results of research are presented in such a format not only are they not sufficiently ‘used’, but because of this prevent the further commission of such research in the future. So the problem is: if the rich descriptions show processes to be more complex and overlaid than the ‘information poor’ research has tended to produce, how can this be represented in an accessible format where the potential reader has preference for linear descriptions preferably using two dimensional process models? So, the challenge would appear to be not only to collect detailed information, but also to be able to represent it to an audience with a preference for process model representations of the world. Discussion Lemonnier ([13] p12) states that: "the fate of a new artefact or technical procedure depends upon its compatabilty with the natural environment and with the state of the technical system at the time." This paper takes the position that our aim is “to re-specify technology with regard to human practice and social organisation… [being] principally concerned with the situated organisation of collaborative activities, and the ways in which tools and technologies, objects and artefacts, feature in practical action and interaction in the workplace”. ([14] p13) It is increasingly recognised that there is inadequate primary research into the reality of the work places where these technologies are to be installed, research that would make it “possible to outline key features of the work which appear relevant to the participants and which have consequences for any future deployment of technology.” (ibid p19 emphasis added) However, developments are still mainly driven by technologies independent of the consideration of the needs of users and the consequences of this are likely to be more pronounced in the complex world of the EHRs, a brief description of which was given above. In this paper we have, in addition to the complexity of the EHRs environment, drawn attention five interrelated problems that EHRs projects face: 1. Fitness for Purpose. EHRs are too frequently seen as ends in themselves, consequently their “ready-to-handness” has suffered through poor design and lack concern with fitness. Unfortunately, such legacy system experiences have created ‘legacy rationalisations’ of why those systems did not operate in the desired fashion. Rationalisations that contaminate not only the research/implementation site but what the ‘solutions’ both in terms of technology and research methodology should be 2. Modelling. Another problem is an over-reliance upon modelling techniques for describing NHS work and structure. A reliance which when inscribed into the EHRs can create a disjuncture between what a model describes as the activities and relationships of healthcare professions, and how they are embodied in the activities on the ground. 3. Previous research strategies. This problem is a broad one of quantitative research strategies and the exclusion of qualitative ones. The hegemony of the former, creating a situation of quantification of qualitative data; thus substituting detailed qualitative analysis with inappropriate quantitative analysis. 4. Methodology. The problem suggested here is that EHR research methodologies have been developed not in accord with epistemological requirements, but practical contingencies: practical contingencies that have led to the use of ‘inadequate’ methodologies using the wrong data collection methods. The key point being, not only a under utilisation of ethnographies, but that informants, often self selecting, while genuinely believing that they can describe the work that is in question, often little understand the day-to-day local contingencies and the situated practices that constitute the reality of the work in question. Indeed, it is frequently in the interests of the real users to hide these practices from the supervisor. This of course raises questions about research methods using these informants as the primary means of data gathering. 5. Data representation. Here the problem is that where ethnographic studies are done, the results of the research are presented in such a format not only are they not sufficiently ‘used’, but because of this prevent the further commission of such research in the future So what is to be done? An important point to make here is that the process model approach is almost a universal standard for description of the activities of healthcare professionals for NHS managers at all levels, and also for the designers of healthcare technologies. This is because it reflects the linear nature much of healthcare activities, and this paper suggests that this preference of representation is one that researchers need to accommodate to some degree. However, this does not mean that the process models need to be ‘information poor’, instead they need to be information rich, because there is a need for designers and managers (as well as clinicians and their support staff) to have a much better understanding of their work activities and how to support them. We suggest that these two requirements are not incommensurate, but that the research is not undertaken to get rich descriptions of activities. And secondly, that the representation of this research tends to be in the form of the written document, or an electronic representation of it. The key being to be able not only to collect detailed information, but also to be able to represent it to an audience with a preference for process model representations of the world. We would go as far as to suggest that new forms of representation may be required. 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