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“That’s all very well in practice…”
Building useful theories about EHRs.
Martin M,
Visiting Professor, Centre for Software Reliability, School of Computing
Science, University of Newcastle, Newcastle-upon-Tyne
Wilson RG
Lecturer, University of Newcastle-upon-Tyne Business School, University of
Newcastle
Booth N
GP and Health Informatics Consultant, Northumberland, England, UK
Abstract
There is a widespread assumption that it is well understood what we mean
by a health record and the communication of patient information. It is also
assumed, often based on the first assumption, that such problems that there
are, are concerned with the detail of coding, integration, function and access –
this being the core domain of medical informatics. Yet, time and again
empirical research about practice, in particular ethnographic research reminds
us that this is not the case and that the world of clinical and management
practice in the health services is as complex as ever.
However, the health service as an enterprise and a community are, clinical
practice and political (and patient) expectations are constantly evolving.
Significant technical developments and innovations are also changing what is
possible or expected. However, some of the long held ideas about records,
record keeping and practice remain. The purpose of this paper is to develop a
theoretical framework for representing and analysing these changes and to
use them to explore some of their implications on the means we adopt to
record and exchange information about patients and their care.
For such theory to be useful, it must address the intentional aspects of care,
the relationships between roles, responsibility and trust on the one hand and
the information channels and communications instruments on the other.
These considerations lead us to the conclusion that, to address the issues we
now face in the context of health informatics, we require a better language
and a richer set of concepts than are provided by those of the enterprise
solution.
Looking at the world
Traditionally, in the UK at least, the development of computer based health
record systems has taken one of two distinct paths according to the context of
use. In primary care, the record system is seen as the tool of the professional
supporting (the) practice in both the sense of the delivery of clinical care and
the management of a small or medium sized enterprise. In the secondary care
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sector, the record system has combined the professionals’ instrument of care
with the management information system of an often large and complex
enterprise – the hospital. Record systems, in both of these cases also relate to
an external environment which includes medical research and education, the
drug and medical supply industry and health insurance, funding and
payments as a public or private service. As we all know, the national
programme – Connecting for Health – is currently transforming the situation
and attempting to deploy an NHS wide enterprise solution as part of the ever
changing organisation of health and social care in this country.
Developments of this scope and magnitude inevitably raise issues about the
nature, ownership, governance and use of patient information but the
concepts and language in which these important issues are discussed is still
largely derived from the world of paper based records, written and verbal
communication which are then translated into the concepts of the database
and of database access. There seems to be an ever widening gap between the
need to articulate policies, interests and concerns about information and how
it is shared, and our ability to shape and govern the technology which
contains it and mediates these processes.
This paper presents some abstract models which attempt to address the
intentional aspects of the generation and interpretation of clinical information,
i.e. “clinical conversations”. We then do some work with these models to
explore the sorts of world views and policy stances that underlie different
approaches to the implementation of EHR systems and applications. Finally,
we develop some arguments about extending the conceptual models and
language to better reflect the intentions and capabilities of modern
information infrastructure and the needs of heath care delivery.
Fig 1: Clinical communication
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Our first model concerns the basic conversations between clinicians and
subjects and between clinicians about subjects. With regard to a single
instance of communication, one side is regarded as the generator and the
other as the interpreter. Since patient history is an essential aspect of clinical
processes, any communication involves the creation as well as the use of
records and this generates the responsibility of the custodian to ensure that, in
the future, the information in the record is only used, i.e. interpreted for a
purpose, that are permitted and/or consented. And the creation of those
consents takes place in the conversation between the councillor role and the
subject leading to questions about what counts as an explanation and what
counts as evidence of consent.
A communication between clinicians about a subject involves the existence or
establishment of a relationship between the subject and the addressee. A
consequence of clinical communication is the creation of a second record and
the very existence of these records creates the possibility of future
interpretations, in either of the two record domains we now have represented
in our model. It also implies a relationship between those interpreters and the
client in the future either directly or through a series of nested indirect
relationships which we will explore in the next models.
It is the purpose of models such as these to be precise so we must distinguish
between the message as a holder of information on the move and the copies of
the message in both sender and receiver record systems as part of the record.
We should also note that the lozenge shaped items in the diagram represent
abstract instruments and make no assumption about the medium,
technologies or mechanisms that will be used to implement them. All that
they imply is that they appropriately represent and preserve the information
which is generated and interpreted by the role holders. This is an attempt to
represent the problem not a solution.
The vertical line in the Fig 1 represents an enterprise boundary across which
communication is taking place. If we take the example of a referral, the
message represents a request for a transaction of care whereby the receiver
will accept responsibility for some area of care of the subject at the request of
the sender. We may then choose to view the generator/sender as the doctor
or as the patient or as a joint request: these are matters of policy and involve
the mapping of the responsibilities represented in the abstract model onto the
rights and responsibilities of real individuals.
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Fig 2: Communication through shared data
Before we examine the secondary use of clinical information, consider a
different approach or “re-instrumentalisation1” of the clinical communication
we have been considering. A second version of Fig 1 could look like Fig 2.
This shows a different approach to clinical communication where we do not
distinguish between the messages and the records shared by the
communicating clinicians. This is not merely a technical change or
reconfiguration. If the clinicians share the record then there are implications
on the nature of the relationship with the subject, one record implying or
connoting one relationship and one view of that relationship. A single record
is clearly appropriate where the relationship with the patient is substitutional,
e.g. among the members of a practice or in the case of a locum. It is also
appropriate where the different relationships represent clinical/functional
organisation e.g. doctor and nurse within a single care delivery unit. But in
these cases, the single record symbolises a single relationship; the line which
can be drawn in the second figure encloses the clinicians rather than divides
them and the implied relationship with the patient is a collective one with the
unit rather than with distinct individuals or sub-units within it.
By this we mean implementing the same basic conversational exchanges of information and
transactions between roles by using different modalities, channels and media. What is
intended remains the same, the extension, however, changes and may represent a different
set of management, as opposed to clinical, policies and practices.
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Fig 3: Contexts of use and justification of clinical information
As we noted at the beginning of this paper, clinical record holding and
information use exists in a wider context. Figure 3 is an attempt to represent
this. In it, we see the clinician – patient context, where the intention is the
delivery of care, embedded in the health service management and as part of
health care enterprise. This context generates issues of cost, liability and
governance. It also has a direct (but external) relationship with the domain of
social care which, if not coordinated properly, can lead to costs for both the
patient and the service providing agencies. There is also the wider context of
medical research and education. Here the justification for sharing information
relates to the collective interest of having adequate care capacity within an
economy and society. These considerations apply in a modified way to the
commercial contexts of drug development and testing but here the benefits
are different and are shared in different ways between the actors. We also
represent legal and civil policing and non health contexts each of which
represents a domain of interest and of power and control. The point of this
model is that, irrespective of how broadly we define the health enterprise and
the clinical information it records, we have to face the fact that there is are
boundaries, that patients have relationships on both sides of these boundaries
and that there is a need to support and govern information flows across them
as well as to share information within them. The nature of the justification of
any flow in one of the interests of the parties.
These flows of information across organisational boundaries are usually more
complex than can be accounted for by a simple messaging or record access
model. We need, in addition, a more powerful set of concepts and language if
we are to speak of the information management responsibilities relating to
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external audiences, at whatever level of granularity we define the external. It
is for this reason that we introduce the concepts of publication and of
information service.
In its simplest form, publication involves a hybrid between the shared record
and the messaging paradigm in that we have the combination of a common,
externally accessible information space as well as internal information spaces.
When we place information in the shared space we call this an act of
publication which has an intended audience and in which the information has
some lifetime or currency. A publication represents asynchronous
communication and produces content which persists and can be organised.
Like any other clinical record, the publication system requires a custodian and
the custodianship of what has to be regarded as an information service has a
structure which has evolved, and is well understood, in many other contexts.
It involves three main divisions of responsibility within an information
service value chain:
Publication responsibility respecting the subjects’ interests and the quality
and utility of content. Under this we have issues such as editorial control,
design and authorship.
Information brokerage responsibilities which address the need of the enquirer
searching for relevant information (pull) or the informer seeking to ensure
that the required information is delivered to the point of need (push).
Brokerage includes the organisation and cataloguing, accreditation and the
management and auditing of transactions, i.e. instances of use.
Information delivery is responsible for controlling access, authenticating
users and channels, the delivery of data and its presentation in an appropriate
and intended form.
The application of these sorts of terms, which originally emerged from the
world of mass communications, seems strange when applied to clinical
information, however, current technologies – and we are referring to the ones
that are being deployed in the National Programme – have evolved and are
evolving to deliver functionality which supports precisely these roles and
relationships and to create safe and manageable information infrastructures.
Applying the Theory to a domain of Policy and Practice
Having introduced a set of terms we can now explore how concepts such as
that of the “record” can be reconstructed. As currently conceived and
discussed, the summary record presents itself as the common (basic) record
system for an enterprise solution which treats the boundary as inclusive of the
NHS. Much of the language that is used comes from the world of the
enterprise solution where information is regarded as a wholly owned internal
resource and the relationship with the subject of that information seems to
own much to the concepts of CRM – one customer and one relationship.
A useful example of where the shortcomings of thinking in this way become
apparent is the problem of “integrating health and social care”. What is often
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meant by this is the desire to create a joined-up service between the NHS and
Social Services for the purposes of providing mental health services for
instance. The assumption here is that one of the key components in achieving
this is the integrated or ‘joined-up’ record. A number of national initiatives
are under way in this “integrating health and social care” context including
Single Assessment for Older People (SAP), Electronic Common Assessment
Framework (e-CAF for Children) and so on.
The one we will use to discuss our theory is the Electronic Social Care Record
(ESCR). ESCRs are seen as a key part of the modernisation of social care in
England. The broad aims of the ESCR initiative are to provide an electronic
record to encourage improvements in social care practice and sustainable
electronic records management. Beyond an obvious critique, based on the
main users of ESCRs records apparently envisaged as being Social Workers in
Social Services departments (statutory bodies) as opposed to workers in the
voluntary and community sector where the majority of social care services are
delivered, the vision of ESCR appears to have been relatively well adopted by
the social services community as a useful one.
The report ‘Information for Social Care’ outlined a vision (partly illustrated by
the diagram below) which was based on the implicit understanding that the
majority of Social Workers record keeping was document-based either in the
mode of reports to case meetings, various structured forms, letters,
photographs, messages (both paper and electronic) etc.
This document-based system is described in the DH Information Policy Unit
publication ‘Defining the ESCR’ (2004) as consisting of three parts (p11):
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•
•
•
Structured recording, such as defined in the Children’s Assessment
Framework and Looked after Children recording framework.
Unstructured recording, covering all other recording, including that
originating outside the agency.
Coded data, as defined in the minimum datasets (core information
requirements)
This is presented within the paper as the means to “enable Councils to develop
more clearly their recording practice” (p10)
However at the same time the summary in the subsequent page (p11)
includes a statement that the development of ESCR should:
•
•
•
Provide the record that can be shared and accessed by service users or someone
acting on their behalf
Enable the social care record to be used as a comprehensive individual record
within social services
Be the basis of the record that is shared with partner agencies, and in
particular form the social care element of the electronic health record
So is the ESCR an enterprise (i.e. Social Services ‘client’ record) or a ‘shared
care’ record. If the ‘record’ is going to be shared the question for social
workers, clients/service users and local authority ICT managers is, who with?
Examing the paper further it seems that:
“The boundaries between these are likely to vary over time. The current trend is for a
greater degree of structure on the basis of improving standards of
recording, and a common practice expected for all staff, including those changing
jobs” (p11)
This ‘hedging’ is understandable as at this time the majority of responsibility
for the social care of children was being passed over to the DfES from the DH.
Later, however, it is stated that the ‘main user’ of the documents is envisaged
as the ‘spine’ or NHS Connecting for Health programme.
“The key issue is that these groups of documents need to be defined at a
national level for the spine. So that if assessments for older people are to be
made available then this type of document should be available throughout the country.
This is especially critical in the large cities where local authority
boundaries are routinely crossed by patients visiting their doctors, hospitals,
clinics etc. The differing approaches to information management in the NHS and
social care are addressed” (p26)
Does the application of any of the theoretical models shed light on this
reasonable confusion. Taking ‘clinical communication’ first it appears in two
of the three models implied for ESCR (i.e. within the SS enterprise and
between SS and the NHS) then a model of ‘clinical’ communication could be
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supported particularly in relationships which were well established,
organisationally and technically stable and therefore governable using the
existing tools (e.g. Information Sharing Protocols). Clearly this ‘theory’
becomes more problematic the further we move from the strictly ‘clinical’ or
‘care’ domain and where the relationships and conversations move from the
statutory sector across a different boundary into the voluntary or private
sector.
This in turn begins to raise significant issues about the relationship between
‘generators’ and ‘interpretators’ of information represented in the second
model.
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