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The Digitalization of Healthcare
The Digitalization
of Healthcare
Electronic Records and the Disruption
of Moral Orders

Ian P. McLoughlin
Karin Garrety
Rob Wilson
with
Ping Yu
Andrew Dalley

1
3
Great Clarendon Street, Oxford, OX2 6DP,
United Kingdom
Oxford University Press is a department of the University of Oxford.
It furthers the University’s objective of excellence in research, scholarship,
and education by publishing worldwide. Oxford is a registered trade mark of
Oxford University Press in the UK and in certain other countries
© Ian P. McLoughlin, Karin Garrety, and Rob Wilson 2017
The moral rights of the authors have been asserted
First Edition published in 2017
Impression: 1
All rights reserved. No part of this publication may be reproduced, stored in
a retrieval system, or transmitted, in any form or by any means, without the
prior permission in writing of Oxford University Press, or as expressly permitted
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contained in any third party website referenced in this work.
Acknowledgements

The origins of this book lay in the unlikely surroundings of the Crown Casino
Complex on Melbourne’s South Bank in early December, 2009. It was here
that Karin Garrety approached Ian McLoughlin (they were attending a con-
ference at the time rather than placing bets) about an idea she had for a
research study of why national electronic health record projects, such as one
that had recently got into trouble in Australia, tended to fail. Over the ensuing
months it was decided to broaden the scope of the research to look at
what appeared to be a more advanced but just as problematic experience in
England. This added Rob Wilson, who had an intimate knowledge of the
events in England, to the team. He was also joined by Andrew Dalley, a
medical practitioner who had been involved in health informatics in Austra-
lia, and Ping Yu, an Australian health informatics researcher. A funding appli-
cation (in a way like placing a bet) to the Australian Research Council (ARC)
was made and (against the usual long odds) funds were won for a three-year
project. This commenced in 2011 and was entitled ‘Generating Insights for
the Future: A Retrospective, Comparative Study of Attempts to Implement
Large Scale Electronic Health Record Systems’ (ARC Discovery Project
110100084).
We would like to acknowledge the support of the ARC and, since our
‘winnings’ were somewhat less than requested, the generous assistance of
other parties as well. We therefore thank our respective institutions—in par-
ticular the University of Wollongong, which hosted the project and supported
a sabbatical period for Garrety that enabled her to work on the research and
conduct fieldwork in the UK. We would also like to thank the University of
Newcastle upon Tyne, whose International Visiting Professorship scheme
enabled McLoughlin to undertake research interviews in the UK and the
university’s Business School for supporting Wilson to visit Australia for the
same purpose.
We would also like to express our gratitude to the people—who must remain
anonymous—in Australia and England who agreed to be interviewed during
our research, many of whom played prominent roles in the highly public
and politicized projects concerned. Likewise, we also express our appreciation
for the invaluable work of Scott Burrows, Kieren Diment, Richard Ross, Kerry
Acknowledgements

Ross, Ingeborg Van Teeseling, Gregor Zelle, Nabi Zaher, Kirti Mishri, Nick
Booth, Mike Martin, Rick Iedema, and Ellen McLoughlin, who provided
research and other much-appreciated assistance, critical comment, or valuable
insight at various points along the way. Thanks are also due to participants
(some of whom had played a significant role in events in each country) in a
dissemination workshop held at the Monash University Prato Centre in Tus-
cany, Italy in September 2013. The sometimes combative debate and discus-
sion did much to encourage the line of argument concerning the disruption of
moral orders that we present in what follows. Finally, as ever, we thank our
families for their forbearance as we again spent many a long hour playing at
the ‘academic casino’.

vi
Contents

List of Figures ix
List of Tables xi
List of Abbreviations xiii

Introduction 1

1. Digitalizing Healthcare: ‘Dangerous Enthusiasm’ or ‘Disruptive

Innovation’? 10

2. The Troubled History of Implementing EHRs 23

3. Moral Orders and Justification in the Division of Medical Labour 41

4. The Development of a National EHR in Australia I: Trials,

Tribulations, and Uncertainty 58

5. The Development of a National EHR in Australia II: The Struggle

over ‘Personal Control’ 78

6. The Development of a National EHR in England: The Summary

Care Record 98

7. Boundary Objects: Building EHRs at National and Local Level 119

8. Conclusion: Moral (Re)Ordering and Rethinking

the Electronic Record 140

Appendix 1. Research Design and Methods 157

Appendix 2. Other Sources Not Cited in Text 161
References 165
Index of Names 187
Subject Index 191
List of Figures

1.1. Proportion of Australian population aged over 65, 1974–2055 12

1.2. United Kingdom population aged under 16 and 65 and over, 1971–2031 12
2.1. Dimensions of EHRs 24
5.1. PCEHR system architecture 84
7.1. Relationship between boundary object and user acceptance 136
List of Tables

2.1. Opt-in/out models of consent 27

2.2. National EHR project comparisons in selected nations 30
3.1. Orders of worth 49
4.1. Key events in the development of a national EHR in Australia, 1986–2008 59
4.2. The HealthConnect project key events, 2000–5 63
5.1. Australian national EHR policy key events, 2007–16 79
5.2. NEHTA/PCEHR project key events, 2010–16 80
6.1. UK national EHR policy key events 99
6.2. NPfIT/SCR project key events 100
7.1. Boundary objects in the four EHR cases 125
A1.1. EHR case study interviews 159
A1.2. Primary care practice profiles 159
List of Abbreviations

AHMAC Australian Health Ministers’ Advisory Council

AMA Australian Medical Association
ANF Australian Nursing Federation
APF Australian Privacy Foundation
BA Business Architecture
COAG Council of Australian Governments
DOHA Department of Health and Ageing (Australia)
EHR Electronic Health Record
EMR Electronic Medical Record
ERDIP Electronic Record Development and Implementation Programme
(England)
EU European Union
FPC Federal Privacy Commissioner of Australia
GDP Gross Domestic Product
GP General Practitioner
HCN Health Communications Network
HIC Health Insurance Commission
HITECH Health Information Technology for Economic and Clinical Health Act
(USA)
HRSCFCA House of Representatives Standing Committee on Family and Community
Affairs
HSCIC Health and Social Care Information Centre (England)
ICT Information and Communication Technologies
LSP Local Service Provider (England)
MyHR MyHealthRecord
NAO National Audit Office (UK)
NCRS National Care Record Service (England)
NEHRT National Electronic Health Records Taskforce (Australia)
NEHTA National E-Health Transition Authority (Australia)
List of Abbreviations

NHHRC National Health and Hospitals Reform Commission (Australia)

NHIMAC National Health Information Management Advisory Council (Australia)
NHS National Health Service (UK)
NHSIA National Health Service Information Authority (England)
NIB National Information Board (England)
NPfIT National Programme for Information Technology (England)
OBS Output-Based Specification
OECD Organization for Economic Cooperation and Development
PCEHR Personally Controlled Electronic Health Record
PHR Personal Health Record
QDGP Queensland Division of General Practice
R&D Research and Development
RACGP Royal Australian College of General Practitioners
SCR Summary Care Record
SEHR Shareable Electronic Health Record
SHA Strategic Health Authority
SHS Shared Health Summary
UHI Unique Healthcare Identifier
WHO World Health Organization

xiv
Introduction

Digitalizing Mr Jones’s Health

Edward Jones is a retired coal miner living on his own in north-east England.
He is a non-insulin dependent diabetic with coronary heart disease. During a
consultation with his general practitioner (GP), Mr Jones agreed to have an
electronic health record (EHR) created as part of his overall care plan. This
allows information about Mr Jones’s medical conditions to be made available
to other healthcare providers, for example to ambulance services and hospital
medical staff, if an emergency were to occur. In addition, Mr Jones is able to
use a portal to add information of his own to the record from his home
computer such as details of his next of kin and what to do in the event of
an emergency.
Some months later Mr Jones is at home and starts to experience severe chest
pains. He calls ‘NHS Direct’, a 24-hour telephone helpline established in
England in 1998 and now discontinued. A patient advisor accesses his elec-
tronic health record, which shows clinical information and details about his
domestic circumstances. The patient advisor calls an ambulance and with
Mr Jones’s agreement informs his next of kin to let her know he is on the
way to hospital. As the ambulance is called, the paramedics on board are
automatically passed key information from Mr Jones’s record relevant to the
emergency (such as his current medications and any allergies) in order that
they are fully informed before they arrive at his home. Similarly, at the
hospital emergency department, test results from his most recent visit as an
outpatient to the cardiovascular department are automatically made available
to the medical team on duty from the hospital’s own patient record system.
Further, any interventions the paramedics make on the way such as blood
pressure checks or other test results are immediately uploaded to the hospital
systems on arrival. As Mr Jones is wheeled into the emergency department, the
receiving medical team already has at its disposal a care pathway populated
with key clinical information about his condition, even down to printed labels
The Digitalization of Healthcare

to attach to his test samples once taken. Of great comfort to Mr Jones and his
family is the knowledge that wherever this emergency might have occurred in
England, all the necessary information would have been available to the
clinicians in exactly the same way.
The above events formed part of a scenario developed at the turn of the
twenty-first century to depict one possible way in which a national electronic
health record system might change healthcare, clinical practice, and the
experiences of patients. Around the world, the past fifteen years or so have
seen major policy, financial, and other investments aimed at realizing visions
of fully integrated national systems of electronic health records that enable
safer, higher-quality, patient-centred healthcare. The purpose of this book is
to try and explain why such visions have largely remained works of fiction.

Digital Health and Electronic Records

Healers began keeping idiosyncratic notes on patients’ symptoms in ancient

times. However, it was only in the early twentieth century that concerted
efforts were made to regularize record-keeping through standard paper forms
(Reiser, 1991a, 1991b). During the 1990s paper records—normally kept in
buff-coloured envelopes named in the UK after their instigator in the early
1900s, Lloyd George (see front cover), began to be replaced by computerized
records, especially in primary care (Purves, 2002; Brennan, 2005). Such
examples of the digitalization of healthcare (sometimes referred to as e-health)
have increasingly joined other new health technologies, such as human
genetics (e.g. ‘tissue engineering’ and stem cell research), as a means by
which healthcare systems and the institutions which comprise them might
be transformed and overall population health improved (Webster, 2007).
Whilst having no precise definition, digitalization is normally taken to refer
to a cluster of informatics technologies which can be ‘used for monitoring the
individual—such as bio-sensors or tele care; telemedicine deployed for diag-
nosis (through imaging/ultrasound) and therapeutic purposes; and informa-
tion systems used to manage clinical data about patients’ (Webster, 2007: 6).
EHRs are a key example of attempts to use information and communication
technologies (ICTs) to record and exchange clinical data.
This is particularly so when the intention is to share information recorded
in digital form across organizational and other boundaries (for example,
between primary care and hospitals, or between clinical specialisms dealing
with the same patient); when it is envisaged that this will occur not for single
episodes of care but as a longitudinal record of an individual’s interaction with
healthcare systems; and when this is attempted at a national scale and is
intended in some way to provide patients with new access to and control

2
 Introduction

over their health data. A report by the European Union (EU) in 2011 claimed
that digitalized records with this kind of functionality were the ‘Holy Grail’ of
e-health policy in so far as they would provide patients with ‘an account
of his/her diverse encounters with the health system as recorded in a variety
of medical records maintained by various providers such as GPs, specialists,
hospitals, laboratories, pharmacies etc.’ (Stroetmann et al., 2011b: 31).
The scenario involving Mr Jones (developed to assist in the development of
a prototype EHR in a regional pilot project in England—see Chapter 7) is based
on the often articulated view that the implementation of national EHR sys-
tems allows the delivery of ‘the right information at the right place at the right
time’ (Department of Health, 2001: 28). This is regarded as particularly import-
ant in cases such as an emergency admission or the management of long-term
chronic morbidities, the incidence of which is rising in many countries in the
context of ageing demographics. This view is based on the assumption that the
paper-based recording and sharing of information too often result in frag-
mented and inefficient services which are prone to error with detrimental
effects on the safety and quality of care. In contrast, making healthcare records
electronic renders health information mobile, easy to access and exchange,
and above all able to ‘travel with the person’ as he/she moves around the
healthcare system (Christensen et al., 2009: 142). Moreover, EHRs are an
essential enabler of the ‘disruptive innovation’ required to bring about a
‘low-cost, high-quality healthcare system’ (Christensen et al., 2009: 143).
However, despite the promises, in practice attempts to implement national
EHR systems have been ‘plagued by delays, escalation of costs, scope creep,
and technical glitches including catastrophic system crashes’ (Greenhalgh
et al., 2009: 730). The technical challenge of designing new systems and
connecting them to diverse legacy systems has proven problematic in many
jurisdictions, whilst the resulting systems have more often than not been
regarded as neither useful nor fit for purpose by clinicians (Greenhalgh et al.
2009; NHS England/US Department of Health and Human Services, 2016).
Having said this, there is some evidence that EHRs implemented in smaller
countries, or in larger countries at regional and local level, are, relatively
speaking, more successful (see, e.g., Hayrinen et al., 2008; Aanestad and
Jensen, 2011; Stroetmann et al., 2011a; 2011b; Greenhalgh et al., 2009; 2013;
Lluch and Abadie, 2013; Kierkegaard, 2015a; 2015b; Bowden and Coirea,
2013). There is now an emerging realization that, whatever the hopeful prom-
ise and rhetoric around the potential benefits of electronic health records, the
benefits are not being realized in practice. As the failures and disappointments
mount, some are beginning to doubt the hype and ask whether the supposed
benefits ever will be realized (e.g. Tehune et al., 2009; Mensink and Birrer,
2010; Karsh et al., 2010; Hyssalo, 2010; Murray et al., 2011; Wachter, 2015;
Rosenbaum, 2015). Like many other attempts by the state to transform its

3
The Digitalization of Healthcare

workings and improve the delivery of public services through digitalization,

the outcomes in healthcare may well be turning out to reflect what are in fact
‘dangerous enthusiasms’ on the part of policy-makers and others (Gauld and
Goldfinch, 2006).
Indeed, even where EHR systems of more limited scope and scale have
been implemented, it has been claimed that healthcare staff are still ‘dis-
tracted’ from the ‘human side of medicine and nursing’ by the new tasks that
EHRs generate, such as data entry, searching, and verification (Gagnon et al.,
2012). Acceptance of EHRs by patients and some clinicians has also been
questioned by significant broader objections about privacy, confidentiality,
and data security. Here concerns have focused upon the implications of
centralizing sensitive medical information in large national databases whilst
at the same time broadening the possibilities for this information to be
accessed by a wide variety of healthcare professionals, whilst also of course
opening up these data to possible cyber theft and abuse (see e.g. Carvel, 2007;
Cresswell, 2011).
Explanations of why EHR projects are so problematic are many and varied.
One theme is that those in charge of national EHR projects seriously neglect
many of the contingencies that affect implementation and adoption
(Greenhalgh et al., 2010, 2011) whilst their policy sponsors, ‘caught at the
heart of institutional webs’, are incapable of developing anything more than
a ‘simplistic view’ of the problems that emerge (Sauer and Willcocks, 2007:
196). The building and implementation of EHRs, especially at a national
scale, clearly involve many stakeholders from diverse backgrounds who have
different interests and priorities. As a result, the reality of what is happening
is always subject to multiple views and open to conflicting interpretations
(Currie and Guah, 2007; Boonstra et al., 2008). When trying to find com-
promises and solutions, there is, it appears, rarely one clear idea of the way
forward that interested parties can agree on.

EHRs in Australia and England

The healthcare systems of Australia and England provide two of the most
significant examples of attempts to design and implement large-scale national
EHRs. Our choice of these countries as the focus of our research was, of course,
influenced by available funding and our own networks which enabled
access into potentially sensitive research areas. However, there are also more
substantive reasons why a comparison between the Australian and English
experiences is instructive. For example, as a former colonial outpost of the
British Empire, Australia’s healthcare system, like many of its other institu-
tions, reflects a common heritage in that basic care in both countries is free at

4
 Introduction

the point of need. However, healthcare provision is organized and funded

quite differently. As a federation (or commonwealth), responsibilities for
healthcare in Australia are distributed across six states and two territories.
The UK has a more centralized system in the form of separate National Health
Service (NHS) organizations in England and the other three constituent coun-
tries of the union (Scotland, Wales, and Northern Ireland). In Australia
primary care is funded through the commonwealth, while public hospitals
are managed by state and territory governments, funded through fixed grants
provided by the federal government. In England funding allocated to the NHS
covers primary care as well as public hospitals.
The strategy, operations, and performance of both health systems are never
far from political, policy, and public concern. Australia’s fragmented arrange-
ments have been consistently criticized but, as students and observers of the
system have noted, have remained remarkably impervious to several attempts
at reform over the past few decades (Macklin, 1991; Lewis, 2005; Armstrong
et al., 2007; Hurley, 2009; Richardson, 2009). The NHS has, almost since its
inception in 1948, been criticized for being inefficient and fragmented, espe-
cially at the intersection of health and social care, and has increasingly been
subject to reorganization and attempts by government to rein in costs and
improve the allocation of resources (e.g. Commission on the Future of Health
and Social Care, 2014). In both countries investment in e-health and a
national EHR have, since at least the turn of the century, been seen as essential
elements in attempts to modernize and transform their increasingly troubled
healthcare systems.
In Australia the federal government claimed that ‘electronic health records
have the potential to save lives, time and money and make the health system
more efficient’ and, moreover, would ‘drag the management of health records
into the 21st century’ (Roxon, 2011). Two attempts to develop a national
health record have been undertaken since 2000. The first project, called
HealthConnect, was abandoned in 2005. A more recent attempt involved the
introduction of a national personally controlled electronic health record
(PCEHR), rebranded in 2016 as MyHealthRecord. To date the PCEHR is reported
to have cost about 1.5 billion Australian dollars (Gartrell, 2015). The system
went live in 2012. However, following disappointing take up by consumers
and clinical opposition, the project is currently stalled pending further trials.
In England, a national electronic health record was described in the late 1990s
as the ‘cornerstone of a modernized health service’ bringing about ‘better,
safer, cheaper and more integrated’ healthcare (Greenhalgh et al., 2009: 730,
citing Department of Health 1998). In pursuit of these objectives £10 billion
was initially invested (the actual costs rose significantly) in what at the
time was billed as the world’s largest civilian IT project—the NHS’s National
Programme for Information Technology (NPfIT). The core component of this

5
The Digitalization of Healthcare

project was a national summary care record (SCR). The NPfIT was abandoned
following much acrimony during the project’s lifetime in 2010, but the much-
delayed SCR survived.
These problems and setbacks notwithstanding, politicians and policy-
makers in both countries remain committed, if not enthusiastic, about the
benefits of e-health and national EHRs. For example, a new Federal Minister of
Health in Australia has recently spoken of the ‘great digital health revolution’
and the potential of mobile technologies to place the future ‘literally in the
palms of the consumer’ (Ley, 2015a). Similarly, in the UK a Five Year Forward
View for the NHS in 2014 set out a vision to be achieved by 2020 of a ‘paperless
NHS’ with ‘fully interoperable electronic health records’ that patients would
be able to access and ‘write’ to online and through ‘wearable’ and other
devices (NHS, 2014a: 32; NIB, 2014).

Health Records and the Disruption of Moral Orders

In this book we take up the challenge of those who have suggested that the
ethical and moral dimensions of the digitalization of healthcare have yet to be
properly addressed. According to Greenhalgh et al. (2010), for example, there
are two alternative narratives which seek to justify the worth/unworthiness of
national EHR systems. The first ‘holds that centrally-stored electronic summa-
ries, accessible by patients and authorized staff, are linked with unassailable
common goods like choice, empowerment, quality, safety, efficiency and
personalized care—and that the “tipping point” for their widespread adoption
is imminent’ (Greenhalgh et al., 2010: 5). The second ‘depicts policymakers as
seduced by a vision of technological utopia, professional leaders as obsessed
with standardization, the public as largely disengaged, and the government
as extending electronic surveillance into intimate parts of citizens’ lives’
(Greenhalgh et al., 2010: 5).
At the core of implementing EHR systems is the need to address moral and
ethical issues. Speaking in the Australian context, for example, Fry et al. (2014)
argue that these challenges remain unresolved, in particular in relation to
clarifying the range of concerns at issue, the positions and interests of key
stakeholders, and the vexed question of how, when building and implement-
ing a national EHR system, such concerns can be resolved in a consensual way
(Fry et al., 2014). However, at present, in most instances the development and
implementation of national projects ‘typically occurs with a greater focus on
the technical issues, to the detriment of considering key ethical questions’ (Fry
et al., 2014: eb35). In consequence there is a need to lay ‘a clear framework
for discussing and integrating ethical concerns in the design and development

6
 Introduction

[if] the trust, and therefore the usability, of any shared system’ are to be
achieved (Fry et al., 2014: eb35).
It is our contention that in order to explore the difficulties that national
EHR projects have encountered, the continuing justifications offered for their
pursuit (often in the face of stakeholder discontent, if not outright oppos-
ition), and how different and counterposed viewpoints can be accommo-
dated, we need to understand the medical record in a deeper way than
might at first appear necessary. As Berg and Harterink observe, whilst ‘on a
superficial level’ medical records might be regarded as ‘mundane’ artefacts, ‘on
closer inspection they prove to be a surprisingly multi-layered technology’
(Berg and Harterink, 2004: 15). Rather than being ‘mere’ repositories of infor-
mation, medical records reflect and structure the relationships through which
medical work is carried out and are a manifestation of both a technical and,
critically, a moral division of labour. In this sense medical records have and
continue to play pivotal roles in what we shall term the moral ordering of
healthcare. As the idea of digitalizing the paper-based record has become a
major policy objective for governments around the world, one consequence
has been that the moral orders that have underpinned the medical division of
labour have been disrupted.
The key actors concerned include, of course, medical professionals, both as
individual clinicians but also as represented by a variety of professional bodies,
who occupy a privileged position in the medical division of labour. However,
doctors since the middle of the last century have had to take into account the
views and interests of a wide variety of other stakeholders. These include
politicians and policy-makers concerned with achieving public value and
reforming healthcare systems to achieve this; managers and administrators
who play an increasingly prominent role in the co-ordination and control of
healthcare organizations; patients as the ‘consumers’ of health services and
advocacy groups established to represent their collective interests who have
rising expectations concerning the quality and safety of care and the nature of
the patient experience; private-sector suppliers and other intermediaries who
offer ‘business solutions’ aimed at delivering government plans to modernize
health services; and privacy advocates, watchdogs, and other bodies con-
cerned with the implications of the increased flow and sharing of information
for privacy, civil liberties, and data security.
All these actors occupy particular positions in the medical division of
labour. However, this division of labour is not just economic and technical.
It is also one underpinned by moral orders which provide justifications for
particular distributions of rights and responsibilities, which are in turn linked
to the detection and management of risks. As such, attempts to transform
healthcare using digital technologies do not just potentially disrupt estab-
lished business models and their associated work routines. They also challenge

7
The Digitalization of Healthcare

the moral orders which underpin healthcare practices and relationships. By

increasing the mobility, transparency, and availability of information (and
associated risks), digitalization has significant implications for the established
rights, relationships, and responsibilities which define the intentions and
identities of participants in healthcare, including patients. This calls into
question what Boltanski and Thévenot (2006) refer to as the ‘orders of
worth’ that participants use to justify their positions and challenge those of
others in public discourse and debate. Orders of worth in healthcare are often
in tension. For example, arguments that prioritize cost-effectiveness and
efficiency can clash with those that hold individualized care, even when
time-consuming and expensive, as the ultimate value. As we will see, the
digitalization of health records has thrown some of these tensions into even
sharper relief, exposing the public justifications and positioning of key stake-
holders to ‘tests of worth’ (Boltanski and Thévenot, 2006).

Research Sources and Book Outline

In exploring these issues we draw on original research that aimed to provide

insights for those engaged in trying to develop, implement, and use digital
technologies in order to improve healthcare systems. The project was designed
as a comparative study of attempts to develop national EHR systems in
Australia and England, but mindful that smaller-scale projects have been
relatively more successful and that there may be significant learning from
making comparisons in this respect as well, we also studied two strategically
significant regional EHR projects which were superseded by their national
counterparts. The first was a regional project in south-east Australia which
produced a working system linking GPs with local hospitals, and the second a
pilot project conducted as part of a demonstration project intended to inform
the ultimately ill-fated NPfIT programme.
For each case we conducted a retrospective, multilevel, and longitudinal
investigation of the policy development, implementation, and outcomes of
the projects. This involved a detailed analysis of documentary sources, includ-
ing policy statements, responses to official consultation exercises, evidence to
parliamentary committees, and so on over the past fifteen years; in-depth
interviews with over thirty key informants, many of whom were involved in
influential and strategic positions as ‘insiders’ within the projects studied; and
a small study of the views of healthcare providers and users ‘on the ground’ in
two primary care clinics in Australia (technical details of the research design
and methods are provided in Appendix 1 and a selective sample of documen-
tary sources consulted in Appendix 2).

8
 Introduction

In what follows our aim is to move beyond simple linear models to explain
change and their taken-for-granted assumptions about the impact of digital
technologies and the need for organizations to adapt to them or face dire
consequences (see, e.g., Tang et al., 2006; Lluch, 2011; Blumenthal, 2011;
Zieth et al., 2014). In this deterministic view there is one path forward to the
goal of widespread digitalization, which can be reached only if we are able to
identify troublesome obstacles and overcome or push them aside. Experience
to date would suggest that there is a need for a better understanding of the
nature of what is involved. There is much we can learn from past implemen-
tations and, where problems have occurred, help avoid similar mistakes and
errors in the future. However, such insights will need to go further than
improving the way projects are managed, systems designed and developed,
and the perceived human and organizational ‘barriers’ to their implementa-
tion overcome. Our aim in this book is to probe much more deeply into these
issues by examining the manner in which the moral orders underpinning the
medical division of labour are being disrupted by the electronic record.
In Chapter 1 we outline the drivers of policy interest in digital health and
explore the arguments that in pursuing their objectives policy-makers are
prone to ‘dangerous enthusiasms’ and conversely that healthcare is on the
cusp of significant disruptive innovation. In Chapter 2 we address key defin-
itional issues and examine the troubled history of the implementation of
EHRs. In Chapter 3 we present the moral orders framework and in the follow-
ing four chapters we put these more conceptual arguments to the test through
a detailed empirical analysis of the experience of building and implementing
national EHRs in Australia and England. In Chapter 4 we consider Australia’s
first attempt to build a national EHR in the form of HealthConnect, a project
which was abandoned in 2005. In Chapter 5 we consider the fate of its
successor, an ambitious and novel introduction of a ‘personally controlled
electronic health record’, and in Chapter 6 we consider the experience in
England in the form of the NPfIT and SCR. In Chapter 7 we use the concept
of ‘boundary objects’ to examine the problems associated with engaging
stakeholders in building EHRs in our national case studies and two antecedent
regional projects and introduce the idea of EHRs as health information system
infrastructures. In Chapter 8 we draw the threads of our argument together
and set out the case for rethinking the nature of ‘the record’ and the moral
orders upon which the rights, relationships, and responsibilities that enable it
to function are based.

9
1

Digitalizing Healthcare

‘Dangerous Enthusiasm’ or ‘Disruptive Innovation’?

In this chapter we consider the motivations behind the often very significant
investments that governments have made in e-health in general and EHRs in
particular. In the following chapter we look in more detail at the fate of some
of these projects and the challenges that have arisen. Our aim first, however, is
to explore two propositions concerning the policy and financial investments
that governments have and continue to make in developing national EHRs.
The first argument, in part fuelled by broader experiences of public invest-
ments in ICT, suggests that such policies can reflect a ‘dangerous enthusiasm’
on the part of politicians and policy-makers that exposes significant weak-
nesses in the ability of governments and their agencies to manage large-scale
ICT projects. The second argument takes a different tack and explores the
significance of EHRs as a key component of the ‘disruptive innovation’
required to transform healthcare systems so that they can cope more
effectively with the challenges they face. Ironically, the idea of ‘disruptive
innovation’ is sometimes appropriated by policy-makers as part of their
‘enthusiastic’ rhetoric. However, disruptive innovation theorists are critical
of the idea being appropriated in this way, and as we argue in the following
chapters, the ‘disruptions’ heralded by e-health do not necessarily enhance
efficiency and effectiveness. Before we consider these issues, we outline the
challenges confronting healthcare systems and why the digitalization of
healthcare is seen by policy-makers as a way of addressing them.

Wicked Problems and the Reform of Healthcare Systems

By the early 2000s it was increasingly evident that healthcare systems around
the world were facing new and potentially calamitous challenges, which
 Digitalizing Healthcare

many theorists have characterized as falling into the category of so-called

‘wicked’ problems (Head, 2008a; Showell, 2011; Ferlie et al., 2013; Shaw and
Rosen, 2013; Australian Public Service Commission, 2007). While ‘tame prob-
lems’ arise in situations where causes and effects, and therefore solutions, are
relatively well understood, wicked problems and their causes elude easy def-
inition. They emerge in complex environments with many interacting and
interdependent elements. Wicked problems appear intractable and can
endure without agreements around ‘solutions’ for decades, whilst ‘solutions’
that are tried often generate new problems of their own (Rittel and Webber,
1973; Head, 2008a). Because of this complexity, it is difficult to discern with
any certainty what works and what does not, and recurrent rounds of reform
are typical as successive governments seek to remedy the negative conse-
quences of previous changes (Paton, 2014).
In the case of healthcare, despite rising proportions of gross domestic prod-
uct (GDP) being spent on its provision, services are struggling to cope with
changing patterns of disease, inequalities in access, ageing populations, and
increasing expectations among patients concerning the safety and quality of
the care they receive. Ironically, perhaps, the most significant factor in
increasing pressure on healthcare systems is a consequence of their success.
In most developed countries, people are living longer (OECD, 2013a). This is
due, at least in part, to changing patterns of disease which are in turn the result
of improved hygiene and nutrition, public health campaigns, and advances in
healthcare treatments. Conditions that were once often fatal, such as prema-
ture birth, spinal and head injuries, HIV and other immune disorders, strokes,
diabetes, heart disease, and cancer, are now to some extent survivable and
manageable.
However, these advances in prevention and treatment, combined with
falling birth rates, have in turn contributed to another problem—a so-called
‘demographic time bomb’. According to the United Nations, for example, the
world is experiencing a ‘unique and irreversible process of demographic tran-
sition that will result in older populations everywhere’ (<http://www.un.org/
en/globalissues/ageing/>). As a result, people aged 60 years or over have
increased from 9.2 per cent of the global population in 1990 to 11.7 per cent in
2013. By 2050 the proportion of the global population over 60 will be 21.1 per
cent and the number of older people will exceed the number of younger people
for the first time in human history (United Nations, 2002, 2013). In Australia a
recent Intergenerational Report projected the number of Australians aged 65 and
above will double by 2054–5, whilst the proportion aged 85 and over, less
than 1 per cent of the population in 1974–5 (80,000 people) will be nearer to
5 per cent (2 million) (Commonwealth of Australia, 2015: viii) (see Figure 1.1).
The King’s Fund reports that at the foundation of the NHS in 1948, just under
half of the population in England died before they reached the age of 65,

11
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