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| Journal of the New Zealand Medical Association,
22-September-2006, Vol 119 No 1242
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Quality improvement in New Zealand healthcare. Part 6:
keeping the patient front and centre to improve healthcare quality
Gillian Robb, Mary Seddon; on behalf of EPIQ*
[*Effective Practice
Informatics and Quality (EPIQ) based at the School of Population Health, Faculty
of Medicine & Health Sciences, The University of Auckland]
Most providers will see themselves as
patient-centred—patients are the reason for coming to work. But many of
our structures, particularly in hospital-based care, conspire against effective
patient-centred care. For example, restrictive visiting hours create barriers
for family to support patients at times of great anxiety and limit opportunities
for providers to discuss management options with patients and their families.
A simple rule of “keeping patients and their loved
ones together through the care process” would lead to entirely different
designs compared with the rule that patients don’t belong in technical
areas or that wards should be quiet in the mornings.1
In primary care, lack of timely access to care and short
rushed visits create dissatisfied patients and frustrated doctors. Alternative
reimbursement systems could provide greater flexibility in the delivery of care.
For example, team members other than doctors, using web and email patient
portals, could perform routine preventive care and manage some patients with
chronic conditions.2 This would free up time for doctors to provide better
access for visit-based care (where appropriate), and to improve the quality of
the consultation.
Recognition that non patient-centred care is rife has
contributed to the call for patient-centred care to become a policy priority in
most healthcare systems. This has been reinforced by challenges to traditional
medical paternalism and increased access to health information, along with the
rise of consumerism and knowledge that patients experiences are potentially
powerful levers for quality improvement.3,4
In New Zealand, the Code of Health and Disability Services
Consumers’ Rights Regulation 1996, developed in response to the Cartwright
Report of 1988,5 established patient-centred care as a priority. The Bristol
Enquiry led to the British Government placing improving patients’
experiences higher up the agenda, thus making it the central theme of its plan
for the National Health Service (NHS) in 2000.6
In the United States, following publication of the report
To Err is Human, the Institute of
Medicine (IOM) published a second report calling for a complete redesign of the
healthcare system to make it more patient-centred.1 They analysed the needed
changes in terms of four levels of healthcare:
Levels A and B are where
patients and the healthcare system interact; organisations support the
microsystems that deliver care and these in turn are supported by the healthcare
environment. While changes are required at all levels to improve quality, it is
the “experience of patients, their loved ones, and the communities in
which they live” which are the “true north” of the model.
In other words, actions taken at levels B, C, and D should
be measured in terms of their effects on the patient experience “and in no
other way”.1 This message has been reiterated by Ron Paterson, Health and
Disability Commissioner for New Zealand. He suggests that the first question
whenever a policy issue arises for public debate should be:
“How will this proposal affect the health and
wellbeing of the community?”7
DefinitionsPatient-centred care—a simple “sound bite”
but a complex concept.8 It is most commonly described in terms of what it is
not—disease-, doctor-, technology-, or hospital-centered.9 Various terms
are often used in association with the concept of patient-centred care, such as
“shared decision making”, “integrated medicine”,
“empowerment”, “informed choice”, “dignity in
healthcare”, “concordance”, and the “expert
patient”.8
In New Zealand, the Ministry of Health’s
Improving Quality document talks about
“people-centred” rather than patient-centred care, and defines this
as:
...the
extent to which a service involves people, including consumers, their families
and whanau and is receptive to their needs and values. It includes
participation, appropriateness and adherence to the Code of Health and
Disability Services Consumer Rights 1996 and adherence to other consumer
protections such as the Health Information Privacy Code
1994.10
By alluding to the Code of Health and Disability Services
Consumer Rights 1996, it acknowledges patients rights’ as integral to
patient-centred care, a common omission in other definitions.11 The words
“the extent to which a service involves people” implies an
application of patient-centred care beyond the patient practitioner interaction,
thus reflecting to some extent the importance of collaboration between patients,
families, healthcare practitioners, and hospital leaders in all aspects of
healthcare at all levels of the healthcare system.12
The Picker Institute, an international organisation which
seeks to improve the quality of healthcare by considering the patient
experience, has identified what they believe a patient-centred service should
deliver:13
This definition is
useful to the extent that it operationalises (to a degree) the definition of
patient-centred care for a service.
These definitions of patient-centred care demonstrate
similar themes (see Box 1), and are indicative of a fundamental shift in the
balance of power in the patient-practitioner relationship—from patients as
passive recipients of healthcare to patients as active participants with
guaranteed rights.
There is, however, now an emerging discussion in the
literature however about patients’ responsibilities, particularly with
reference to the growing costs of unhealthy lifestyles and the fact that
patients can actively influence the outcomes of care both for good and for
bad.14 These are important issues, but such discussions must take account of the
fundamental inequality of information, expertise, and power that persists in the
patient practitioner relationship.
Being sick is inherently a vulnerable position to be in.
Kelley argues that placing more emphasis on professional responsibility is
“largely correct” and emphasises the importance of a cautious
approach to patient responsibility based on persuasion and encouragement rather
than blaming patients for past behaviour.15
Models of patient-centred carePatient-centred care has mostly been described in the
context of chronic disease management (e.g.diabetes) in primary care. The
concepts of the expert patient and
shared decision-making are models of
patient-centred care.
The expert
patient—The “Expert Patient Programme” (EPP) is an
initiative implemented in the UK by the NHS. Its intent is to enhance patient
autonomy and reduce reliance on limited healthcare resources by promoting the
need for patients to be more actively engaged in managing their own
conditions.16
The EPP is based on models of chronic disease self
management developed at Stanford University17and successfully tested in the
1990s.18 It involves a structured 6-week training programme designed to give
people the confidence, skills, and knowledge to manage their disease and to
minimise its impact on their everyday lives. Expert patients are those who
“take responsibility for the day-to-day decisions about their health and
who work with healthcare providers as collaborators and partners to produce the
best possible health given the resources at hand.”17
The UK NHS piloted and evaluated the EPP between 2001 and
2004. Self reported data from participant questionnaires before and after the
programmes suggested improvements in levels of confidence in managing pain,
tiredness, depression, and breathlessness; reductions in GP visits, A&E
attendances, and outpatient appointments; and improved compliance with
medication and other treatment regimes.18
The programme has not, however, been without its
critics.16,19 Questions have been raised about the extent to which a patient can
be considered an “expert” and the implications for healthcare
practitioners in accepting patients taking a more active role in their care.19
Some of these concerns can be addressed by understanding the distinction between
illness and disease, as expressed in the old adage, “you go in to the
doctor with an illness and come out with a disease.”16
Illness is what the patient experiences. They bring the
knowledge of their condition (gained from a variety of sources) to the
patient/practitioner encounter, as well as their unique experience of their
illness described in terms of symptoms; how these impact on their quality of
life, how they manage these on a day-to-day basis, and what recovery or healing
might mean to them. In this respect, they may indeed be considered
“expert” in the sense that they understand their illness as they
experience it and manage it.
In contrast, doctors understand and manage diseases. This
requires a technical expertise based on knowledge about the pathophysiology of
disease as well as diagnostic and treatment procedures. This technical expertise
is enhanced by the skill that experienced practitioners, in particular, have in
coping with uncertainty and atypical presentations. This key professional
attribute, important in medical decision-making, has been called
“phronesis”, defined as “the ability to make good decisions
and take effective action in unfamiliar situations”.16
In the context of the EPP which calls for collaborative
partnerships between patients and practitioners, more effective collaboration is
possible when there is a clear demarcation of areas of expertise and
responsibility.16
Ashkam and Chisholm elaborate further on this distinction in
their paper Patient-centred medical
professionalism. They explore the basic concepts underpinning the notion
of patient-centred care, namely what it means to be a patient (lay medical role)
and what it means to be a doctor (medical professionalism). Furthermore, they
identify where the interests and preference of each intersect and where further
research is needed to resolve areas of conflict.20 This type of research should
contribute to a better understanding of the issues at stake, and facilitate the
implementation of structures and processes that support collaborative
partnerships between patients and practitioners in any setting.20
Shared
decision-making—Shared decision-making is another model of
patient-centred care which has relevance across a broader spectrum of healthcare
provision including prevention, acute, chronic, and palliative care. From an
ethical perspective, it promotes patient autonomy and self determination and
promotes trust in the patient/practitioner relationship. A more informed patient
has more realistic expectations, having weighed their personal preferences and
values with information about the benefits and harms of the proposed
management.21
Shared decision-making is the process of interacting with
the patient to assist the patient to make an informed choice.22 Various models
have been described, most of which include the patient’s right to
relinquish the decision in varying degrees to the clinician, recognizing that
the extent to which patients contribute to the decision-making process will vary
according to the patients personal characteristics (age, gender, education, and
ethnicity), the practitioners communication style, the health condition, and the
clinical setting.23
There also needs to be some consideration of the of the
differential power in the relationship, given the doctor’s role in
legitimising the ability to work, drive, and receive benefits and the fact that
they are the gate keepers for healthcare resources.19
The World Health Organization’s24 “5 As”
framework (Box 2) offers a systematic approach to shared decision-making which
has particular application in preventive and chronic care to ensure consistency
of care.21 Many clinicians will recognise these steps as part of their everyday
practice.
Box 2. A systematic approach to shared
decision-making
Adapted from Sheridan et
al.21
The shared decision-making model is particularly relevant
when there are two or more medically reasonably alternatives, such as
‘radical prostatectomy versus radiation treatment for prostate
cancer’ or ‘watchful waiting versus surgery for chronic
cholecystitis’.25 This has been called “preference-sensitive”
care.25 Evidence-based decision tools (designed to provide up-to-date
information about the risks and benefits of the available options) assist
patients in the decision-making process and help patients clarify their values
and preferences. Failure to base the choice of treatment on the patients’
preferences and values in this case has been termed “misuse” which
sits alongside underuse and overuse as examples of poor quality care.25
The success of achieving an informed and joint decision can
be measured in terms of the extent to which the patient:
What is the evidence for a patient-centred care approach?In terms of health outcomes, the evidence base for
patient-centred care is growing (see Box 3). Studies have shown that there are
benefits in terms of patient satisfaction,26 adherence to best-practice
protocols, reduction of anxiety, and improved quality of life.27
Interventions that have provided patients with training in
information-seeking and negotiating skills have resulted in improvements in
symptoms and outcomes.28 Expert patient models of care in diabetes has resulted
in better blood sugar control and quality of life.29,30 There have also been
benefits in terms efficiency through fewer diagnostic tests, unnecessary
referrals, and treatment.25,27,31
A Cochrane review of interventions to promote a
patient-centred approach in clinical consultations found some evidence for
improved patient-centredness of care, but also found mixed evidence about the
effects of such interventions on patient healthcare behaviours or health
status.32 The review noted that the included studies varied considerably in
terms of types of interventions, the clinical conditions, the comparisons made,
and outcomes assessed; and methodological quality was generally poor.
A comprehensive review of studies relating to chronic care
management (560 systematic reviews, randomised trials, and other studies) found
evidence for involving people with long-term conditions in decision-making,
providing accessible information, self management education, and self monitoring
and referral systems.31
BarriersNumerous barriers to achieving patient-centred care have
been described: the design of healthcare systems, poor communication skills,
attitudes of doctors, inadequate training of health professional, limited
resources (people, time, and money), lack of information in an accessible format
to patients, failure to involve family and friends, lack of integrated care,
lack of patients rights, and so the list goes on.11
In addition to physician and structural barriers to
patient-centred care, there are also barriers for patients in actively engaging
in making decisions about their healthcare. Lack of understanding about the
nature of medicine as an “inexact science” and limited understanding
of medical concepts such as “risk”—and what words such as
“some” and “likely” mean—are confusing even for
the more numerically literate patients.21 Lack of awareness of treatment
alternatives, coupled with inexperience and discomfort in engaging with
clinicians in this way represent common reasons why patients may fail to engage
fully in healthcare decisions.21
Social, linguistic, and cultural attributes have also been
cited as barriers.3 It is worth remembering that the concept of patient-centred
care originated in North America and Europe and may have limited relevance for
some patients.11 For example, ethnic groups who do not value autonomy may also
be reluctant to engage in shared decision-making.21
ConclusionsPatient-centred care is one of the most important dimensions
of quality; in fact adhering to its principles can help drive those
dimensions—making healthcare safer, more accessible, and timely; more
equitable and effective (including the concept of appropriate care); and even
more efficient. However, it is clear that the concept of patient-centred care is
complex and contested. Its effective implementation is impeded by the variety of
understandings, lack of leadership from policy makers, and the divergence of
views between clinicians and managers.3
The expert-patient approach has been adopted in the UK and
is best suited to patients with chronic care conditions. Shared decision-making
is another approach and is useful when there are competing alternatives. These
approaches do not decrease the importance of practitioners skilled in biomedical
science with up-to-date knowledge of evidence-based diagnosis and management.
But they do require additional skills—especially in effective
communication—that allow practitioners to be guides to their patients.
For
the clinician this is not about ‘behaving correctly” but about
practicing sound medicine by engaging the patient in a way that provides
additional information to achieve the desired outcome for the
patient.33
Some of the structures and the way that we organise care are
in conflict with patient-centred care. For this to change, the meso and macro
levels of healthcare need to pay more than lip-service to patient-centred care.
In the broadest sense, the phrase “nothing about me without me”
expresses the ideal of patient-centred care in which patients work together with
health professionals as “full partners to design and implement
change”.34
Conflict
of interest: No conflict.
Author information.
Gillian Robb, Mary Seddon; on behalf of EPIQ.
EPIQ is a School of Population Health Group (at Auckland
University) with an interest in improving quality in healthcare in New Zealand.
EPIQ members involved in this
Series are:
Correspondence:
Mary Seddon, Senior Lecturer in Quality Improvement
Epidemiology & Biostatistics, School of Population Health, University
of Auckland, Private Bag 92019, Auckland. Fax: (09) 3737503; email MZSeddon@middlemore.co.nz
References:
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