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Patient experience as an indicator

of clinical quality in emergency
care
Suzanne Shale

Patient
experience

285

Department of Primary Care Health Sciences, University of Oxford, Oxford, UK

Abstract
Purpose There is growing focus on the importance of attending to patient experience in delivery
of health services, and the design of clinical quality indicators. Patient experience (also termed user
experience) has been augmented by staff and carer experience in the service experience quality
indicator for emergency care in England. But patient experience is a contested concept which
patients, clinicians, politicians, managers and academics view differently.
Design/methodology/approach The purpose of this paper is to examine approaches to thinking
about patient experience. The author describes three key approaches to conceptualising patient
experience and identify their philosophical origins, then asks what aspects of patient experience ought
to be treated as key to measuring the quality of emergency care. The discussion is illustrated with
extracts from a patient interview describing emergency care following placental abruption.The author
demonstrates that differing purposes and differing conceptions of care direct attention to different
aspects of patient experience.
Findings Donabedians insight was that conceptions of quality are inevitably related to
conceptions of value and the author concurs, arguing that decisions about which aspects of patient
experience to include in clinical quality indicators are ethical as well as technical judgements.
Practical implications This paper is of value to those concerned with quality improvement
because it clarifies the meaning of patient experience in the context of care quality measurement, and
highlights the ethical implications of experiential data.
Originality/value It is a novel synthesis of understandings of patient experience and clinical
quality in emergency care.
Keywords Culture, Qualitative research, Clinical governance, Continuous quality improvement,
Emergency department, Health care quality, Patients
Paper type Conceptual paper

Patient experience as a clinical quality indicator

Aspects of patient experience have become an increasingly prominent component in
quality measurement. The English Government pinned its colours to the mast in its
2010 NHS White Paper, opining healthcare systems are in their infancy in putting the
experience of the user first and proposing an information revolution would be the
key to better care [and] better outcomes. It called for PROMS, other outcome
measures, patient experience surveys and national clinical audit to be more widely
used in future (DoH, 2010). The problem is that while in political rhetoric the
experience of the user is a simple and self-evident good, the experience of the user is
in fact a complex and contested phenomenon. Patients, clinicians, politicians,
managers and academics seem often to have something rather different in mind when
they refer to patient (or user) experience.
In this paper I examine approaches to thinking about patient experience and ask
what aspects of patient experience ought for one reason or another to be treated as key

Clinical Governance: An International

Journal
Vol. 18 No. 4, 2013
pp. 285-292
q Emerald Group Publishing Limited
1477-7274
DOI 10.1108/CGIJ-03-2012-0008

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to measuring the quality of emergency care. I illustrate my discussion with an extract

from an interview with a patient who experienced emergency care following a
placental abruption. This interview has been selected from a long-running qualitative
research project, which over the past decade has recorded interviews with some 3,000
patients about their varied experiences of health and illness[1]. The interview I have
used is not part of a representative sample of patients in the emergency department,
nor indeed is it part of a representative sample of patients with this condition. But
neither does it contain anything in any way controversial or surprising. I draw on it in
order to consider themes that will be immediately familiar to any clinician who has
worked in emergency care.
What does quality mean?
Donabedian began his seminal article Evaluating the quality of medical care
observing that the quality of care is a remarkably difficult notion to define . . .
although it is, ordinarily, a reflection of values and goals current in the medical care
system and in the larger society of which it is a part (Donabedian, 1966). For example,
members of a culture which viewed pain and suffering as a path towards spiritual
redemption would likely possess a different understanding of what counted as quality
in pain management than members of a culture which viewed pain as nothing more nor
less than an unpleasant and avoidable signal of biological irregularity.
Donabedian went on to introduce what we might call the Donabedian mantra, the
proposal that quality be assessed by reference to three key domains: clinical outcomes,
processes of care, and the structure of care (by structure, he meant the institutions and
administrative practices which enable care to be provided).
Donabedians insight that perspectives on quality are informed by the values and
goals of medicine and society are easily lost in the search for valid and reliable
measures of quality across those three domains. But his is an important insight. It
makes clear that clinical quality is not merely a technical matter that will be settled
purely through good empirical research. Quality is also a moral, cultural and political
issue. It is a question of what matters, and whose say goes about what matters. Hence,
the approach we adopt towards patient experience as an indicator of quality is as much
a question of value as it is a question of measurement.
Understanding experience
Attending to patient experience as an indicator of clinical quality is a fine idea at risk of
being reduced (in parts of the UK at least) to a vacuous political slogan. We can counter
that risk by being clear about what is meant by patient experience, and about the ways
in which attentiveness to patient experience matters to patients. Below I differentiate
three common approaches to thinking about patient experience.
Clinicians are likely to be most familiar with the approach adopted by the life
sciences, in which illness and treatment are viewed from the perspective of
philosophical naturalism. A naturalistic account of the illness experience gives
priority to natural or physical facts, and presents illness as primarily a matter of
biological dysfunction. Thus, a naturalistic report on a patient arriving in the
emergency department with placental abruption will describe profuse haemorrhage,
hypotension, tachycardia, a firm and tender uterus, and hopefully the presence of

normal foetal heart tones. This, plainly, is an objective, third person account of the
experience of being ill.
The pre-eminent concern in naturalistic versions of the illness experience is to
understand physiological facts as a precursor to restoring the body to its desired
normal range of functioning. It affords a great deal of explanatory power, underpins
the biomedical advances from which patients benefit, and supplies the basis for many
clinical quality indicators. It is easy to see, however, that it does not tally with the
patients subjective experience of placental abruption. The pregnant woman who
survives this episode will not be telling her friends that she experienced profuse
haemorrhage, hypotension, tachycardia, and a firm uterus.
A second approach is central to the concerns of politicians and the private health
sector. Both are inclined to treat patient experience as meaning the experience of being a
customer, with the highest accolade for a hospital being that it has more net
promoters than detractors. Treating patient experience as a variant on customer
experience indicates that the pre-eminent concern is what do patients think of us?
Patient experience viewed as customer experience might therefore conveniently be called
a second-person approach. It is important to English politicians for two reasons. The
first one is that satisfied NHS customers translate into votes. The second one is that
measures of customer experience are a precondition to any form of quasi-market.
Markets are driven by consumers making rational choices, and health consumers need
information about quality if they are to make a rational choice of provider.
Unfortunately, the evidence to date is that health consumers are not the rational choosers
that economists imagine. In the face of evidence of poor care, they continue to patronise
their familiar provider. (Laverty et al., 2012) But dependence on consumer choice is of
course the reason that private health providers seek to measure patient experience.
Although political leaders may be tempted to tout patient experience measures to
demonstrate how patient (and voter) centred they are, the pursuit of patient experience
as customer experience can be quite institution-centred. A poor showing on customer
experience metrics is as likely to lead to management action designed to protect the
institution as it is to management action designed to protect the customer/patient.
In the customer experience approach, patient experience is easily conflated with
patient satisfaction. There is a substantial and interesting literature dealing with the
differences between patient experience and patient satisfaction, but for the purposes of
this discussion it is sufficient to note two dangers that arise from confounding them.
The first danger is that patient satisfaction ratings can be misleading. There is a
complex relationship between patient knowledge, patient expectations of care, patient
experiences of care, patient assessments of care, and objective measures of patient
benefit (Williams, 1994; Staniszewska and Ahmed, 1999; Black and Jenkinson, 2009;
Edwards et al., 2004) In some circumstances high levels of patient satisfaction supply
evidence of high quality medical care, where in others they supply evidence of low
expectations or unnecessary treatments. (Greaves et al., 2012; Fenton et al., 2012) The
second danger is that patient satisfaction measures may be turn out to generate costly
but practically useless data. Unless it is well designed, a satisfaction-rating instrument
cannot tell you what to do if patients are dissatisfied. You may not know what you
have done wrong. Service improvement activity requires specific data about what
actually happened, not just data on whether patients were satisfied with what
happened.(Berwick et al., 2003)

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Finally, we come to the first-person perspective on health and illness. Its philosophical
roots lie in phenomenology, but it has more recently flourished in medical sociology and
applied health research. Here the chief interest is in understanding how patients
experience living with the reality of health, illness and medical treatment. Patient
experience as lived experience has as its pre-eminent concern what we might call the
existential aspects of illness and treatment: what does it humanly mean to be
experiencing ill health and experiencing care? (Kleinman, 1988; Cassell, 1991) The
first-person perspective invites us to consider illness and care from the point-of-view of
the person who experiences it, because that experience is their lived reality.
From the first-person perspective, if we think it important to medicine to understand
illness, then we need to understand patients experiences of illness. I hope the following
example will make the point more clearly than an abstract argument.
Physicians encounter the phenomenal nature of human experience every day in
practice. Patients who present in pain will often exhibit unmistakable signs of pain
such as grimacing, crying, or flinching. It is clear however that the pain the patient
feels is a different phenomenon from the signs that we see. While patients can
communicate with greater or lesser degrees of precision that they are in pain, their
current sensation of pain is theirs alone.(Scarry, 1985; Morris, 1991) The objective signs
encourage us to conclude that the patient is undeniably experiencing something akin to
the pain that we have felt ourselves. What motivates clinicians to do something about
this pain of the patients that they cannot themselves feel, is that they have had their
own experiences of pain that they believe roughly correspond to the patients. They
therefore know what relief of pain means.
We noted earlier Donabedians observation that notions of quality reflect the values
and goals current in medicine and society. In their own way, each of the third person,
second person and first-person approaches stakes a claim to the moral high ground of
patient experience. Naturalism does so on the basis that it saves, extends, and improves
lives jeopardised by ill health. Advocates of customer experience measures promote
them with the claim that attending to customer experience changes institutions for the
better. Proponents of broadly phenomenological accounts of illness believe that they
achieve a superior understanding of patients existential challenges and needs.
The question that obviously arises is which aspects of patient experience should be
treated as significant for the purposes of developing a clinical quality indicator. The
naturalistic, third person perspective has already established its credentials. The
customer experience, second-person perspective is supported by political and profit
motives. So I want to consider the contribution of the first-person perspective.
The meaning of patient experience
The following interview extract is from a patient interviewed for a study of near-miss
maternal morbidity (Hinton et al., 2012). She had sudden onset of pre-eclampsia,
suffered placental abruption and underwent emergency caesarean section.
Anyway as we pulled into the [um] the entrance of the hospital, [um] I obviously passed a
massive blood clot at that stage and then the ramp got stuck on the back of the ambulance.
They couldnt get me out very quickly. But even so I was just sort of lying there thinking,
okay, something, something is happening here. And as soon as, the minute that they got the
ambulance door to work, as soon as the wheels on the trolley hit the ground, then there was
sirens and an awful lot of people, and running down the corridor. Like, well it was like

something off Casualty really, and I heard someone shout, Crash team. It sounds quite
dramatic. [laughs]

Patient
experience

At the time I was thinking crikey, crash team. Whos dying? Is it me? Am I dying? I dont feel
that bad. I mean Im in quite a lot of pain, but I dont think Im about to die. [um] You know, is
the baby okay? And, and then they cut my clothes off, I remember, getting hold of my crocs
and throwing them across the room. And [um] waving a consent form in front of my face,
saying you know, Do you consent to you . . . Well [er] I dont even remember what the
consent form was for, but, [um] and [um] they put the Doppler on my [um] on my bump which
was, Im so glad they did that, because then they made a point of really saying to me, You
can hear that cant you? You can hear him cant you? And Im like yes. . . [becomes tearful]

289

From the patients perspective, all of what she recalls and tells us here is relevant
experience. Her recall may be faulty, but even if it is, it remains her recollection of her
experience. She may also have embellished the story, or told it in a way intended to
communicate a flattering message about herself to the interviewer. Medical
sociologists refer to this as an interviewees moral performance. But even if this
patient did indeed turn in a moral performance, the performance still represents a
certain sort of artistic truth about the meaning she now assigns to her experience.
There are also probably aspects of her experience that she has chosen not to talk about
in this interview, but which she might have referred to on a different occasion. For the
patient, all of those features of the interview, including the untold parts, count for
something. All of it is her experience of care.
Similarly, to the philosopher or sociologist everything that the patient describes or
withholds is potentially valuable data.
But there is much experiential matter in the interview that would seem to be
irrelevant for the purposes of developing a clinical quality indicator. The reference to the
TV programme Casualty, for example, might not carry much weight (although this tells
us something of patients expectations and how they make sense of their experience);
cutting off her clothes would not seem to be important (although were this not done in
private, it might bear a different meaning); flinging the crocs across the room seems not
to be significant. But the consent process she describes, and her account of being given
the chance to hear her babys heartbeat, are worthy of further consideration.
As to the first of those, clearly this was not a fully informed consent. The question is
whether in the circumstances that matters, and why or why not. My sense is that
doctors who deal with clinical emergencies would be divided on this. Should we treat
this patients description of being consented as meaning that informed consent is a
morally essential process that simply has to be adapted as best it can to difficult
circumstances in which it will be sub-optimal? Or should we construe it as indicating
that the concept of informed consent is a legal distraction, a medico-moral theory at
odds with the demands of practice and patient needs in an emergency? Of course one
example does not suffice to draw a conclusion, and we should anyway be careful about
deriving moral propositions from a narrative of fact. Philosophers since Hume have
been eager to remind us that what is the case does not equate to what ought to be
the case. Nevertheless, if medical practice demands some sort of moral understanding
to pass between doctors and patients about how bodies are treated (and it would be
hard to deny it does) then the patients experience of the consent process is a candidate
for an experience-based clinical quality indicator.

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The patients account of hearing her babys heart beating appears to lead to a
clearer conclusion. It is not as apparent in print as it is on the video recording quite how
critical that part of the story was. There is a clue in that the patient mentions asking
herself whether her baby is still all right, before she goes into her description of the
consent process. She then returns to the issue.

290

Im in quite a lot of pain, but I dont think Im about to die. [um] You know, is the baby okay?
. . . Well [er] I dont even remember what the consent form was for, but, [um] and [um] they put
the Doppler on my [um] on my bump . . . then they made a point of really saying to me, You
can hear that cant you?

As she recalls hearing her babys normal heart beat, she is choking back her tears.
What really mattered to this patient was the compassion that that act demonstrated,
someones recognition that what was of even greater importance to her than her own
life was the life of her baby. Putting the Doppler on her bump did not change the
clinical outcome. But it had a profound effect on her experience of care, and thus, from
her perspective, on the quality of the care she received. For that reason we need to
consider whether, and if so how, to assess the contribution to care quality of emotional
phenomena such as compassion.
Patient experience is a moral issue
The hard-nosed rationalist might ask why, if mother and baby both survive, we need
be concerned about the quality of the surrounding experience. It is an easy question to
duck by answering that an unarguable case has already been made for the human
value of virtues such as kindness; and that it costs no more to be kind than to be
unkind, to be respectful than disrespectful, to be caring than dismissive, and so on.
And there is in any event accumulating evidence that responsiveness to patient
experience is associated with higher quality technical care ( Jha et al., 2008) as well as
better health outcomes, including decreased mortality (Meterko et al., 2010).
But sometimes providing a better emotional quality of care will cost more, and
better outcomes will not be measurable. Time is money, and lack of time can make it
next to impossible to attend to patients interpersonal needs.
We need to recognise a third argument. Health professionals enter their profession
possessed of the capacity and the desire to treat patients well, so that being unable to
respond to patients needs not only disadvantages patients but also induces moral
distress in the health professions. It may not be a persuasive argument to a narrow
minded bean counter, but one reason we need to be concerned about how patients
experience care is that everyone who works in healthcare is debased if we do not pay
attention to it. What we need health economics to establish is the threshold at which
the moral risks associated with uncaring care become real. And we need clinical
indicators that enable us to understand patients experiences of care with sufficient
clarity and reliability that clinicians can be responsive to them.
The enterprise of medicine needs objective accounts of illness as biological
dysfunction, and objective indicators of the impact of intervention, because medicine
seeks to change the course of biological events. So too, health institutions and health
economies need useful markers of cost-effectiveness because health is only one of the
social goods to which societies wish to allocate resources. But if medicine is to be a
humane enterprise, clinicians also need to know about patients encounters with
kindness, care, compassion, rescue, and all of the opposites, on the clinical front line.

Patients need caregivers to gauge the human dimensions of their experience, because
illness and treatment mean more to them than a measurable clinical outcome or a
cost-effective intervention.
Note
1. The project findings, including video and audio extracts from patient and carer interviews,
are published on the web at www.healthtalkonline.org The research is carried out in
accordance with ethical approval from a Multi Centre Research Ethics Committee in the UK.
Participants are encouraged to tell their story of health and illness from first onset in their
own words in open-ended in-depth interviews. A narrative interview approach is augmented
by reference to a topic list to ensure that broad topics of relevance are explored. As I have
drawn on a single interview for illustrative purposes only, detailed discussion of sampling
and analysis across the project is unnecessary here.
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Corresponding author
Dr Suzanne Shale can be contacted at: suzanne.shale@clearer-thinking.co.uk

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