Problems Encountered in Electronic Health Record Research

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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.
Our message is not that the ethnographic dimension of our work is a substitute for the
managerial or architectural perspectives but that these three perspectives have to be combined
appropriately if the concept of EHR is to result in tools that are “ready-to-hand” and thus meet
political and clinical needs.
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