2019 The Economist (Intelligenc - Unknown

CREATING HEALTHY
PARTNERSHIPS:
THE ROLE OF PATIENT VALUE AND
PATIENT-CENTRED CARE IN HEALTH SYSTEMS
Supported by
C R E AT I N G H E A LT H Y PA RT N E R S H I P S :
THE RO LE O F PATIE NT VALUE AND PATIE NT-CE NTRE D
C A R E I N H E A LT H S Y S T E M S
CONTENTS
About this report 2
Executive summary 4
Chapter 1: Introduction: Refocusing medicine 7
Echoes of a long-established hierarchy 7
The rise of value-based healthcare 8
But whose value matters? 10
Patient-centred care: The optimal version of value-based healthcare 11
Charting uneven progress 13
Chapter 2: The Patient-Centred Care Scorecard 14
Introducing the scorecard 14
The results 15
Chapter 3: Patient-centricity: The gap between grand strategy and detailed policy 19
Declarations aplenty but fewer detailed plans 19
Barriers to change 21
Box: A radical duck: What is shared decision-making? 23
Chapter 4: Health systems that still need work 26
Doing old jobs better 26
Access to records: a (small) step in the right direction 26
Still not looking patient-centric 27
Box: Humana: Looking at the wider boundaries of patient-centred care 29
Chapter 5: Metrics and data gathering urgently needed 31
No date for the PROMs 31
New kinds of metrics: PREMs and PCOMs slowly appearing 32
Box: Patient preference studies and drug development: Moving beyond window dressing 33
Data bubble: whose data gets to matter? 34
Chapter 6: Lessons from China: Patient-centred without a patient voice? 36
Effort is necessary 36
But not all effort succeeds 36
A muffled patient voice 37
Chapter 7: Engaging patients and patient communities one at a time 40
Some patients are more central than others 40
Contrasting advocacy histories: AIDS and epilepsy 41
Make passion less necessary 42
Conclusion: Vital considerations for patient-centred care 44
© The Economist Intelligence Unit Limited 2019 1

ABOUT THIS REPORT

Creating healthy partnerships: The role of patient value and patient-centred care in health systems is a
report written by The Economist Intelligence Unit, and sponsored by UCB, a global biopharmaceutical
company. The content of this report is solely the responsibility of The Economist Intelligence Unit and
the views expressed are not necessarily those of UCB.
It explores the key factors that nine high- and middle-income countries should consider to better
integrate patient-centred care, an evolving and challenging concept for burdened healthcare systems
that have been traditionally paternalistic and provider focused. The nine countries analysed are Brazil,
China, France, Germany, Italy, Japan, Spain, the UK and the US. The report is based on several strands
of research, as follows:
It introduces the Patient-Centred Care Scorecard (“the scorecard”), which looks at the state of the
transition toward patient-centred care in the nine countries. Created by EIU Healthcare, the scorecard
combines findings around 26 separate data points to provide a comprehensive overview of how well
these countries are doing in the key areas of this challenge.
It also draws on a survey undertaken by The Economist Intelligence Unit of 45 patient groups and other
relevant actors across the nine countries and five disease areas: epilepsy, HIV/AIDS, mental health,
osteoporosis and psoriasis.
In doing these elements of the research and throughout the project, The Economist Intelligence Unit
has benefitted from the input of an advisory board of experts from patient groups, think-tanks and
academia, which convened in London on May 17th 2018. Their advice has shaped the priorities of the
study, as well as the content of the scorecard and survey.
In addition to these advisers, we conducted 13 interviews with patient group leaders, clinicians,
academics, healthcare payers, and those with policy experience to obtain an in-depth view of the
issues involved.
Finally, supporting the research, and feeding into this publication, has been substantial desk research,
including a wide-ranging literature review by EIU Healthcare in preparation for the advisory board
meeting and further detailed study of specific topics that the scorecard and survey raised.
Our thanks are due to the following for their time and insight (listed alphabetically):
Advisory board members
 Jessica Beagley, policy research manager, NCD Alliance, UK
 Nicola Bedlington, secretary-general, European Patients Forum, Belgium
 Marc Boutin, CEO, National Health Council, US
2 © The Economist Intelligence Unit Limited 2019

 Angela Coulter, senior research scientist, Nuffield Department of Population Health, University of
Oxford, UK
 Chris Graham, CEO, Picker Institute Europe, UK (also participated in the interview programme)
 Karin Jay, senior director of international business development, Planetree, US
 Šarūnas Narbutas, president, Lithuanian Cancer Patient Coalition, Lithuania
Interviewees
 Alan Balch, CEO, National Patient Advocate Foundation, US
 Roy Beveridge, chief medical officer, Humana, US
 Isabella Erb-Herrmann, Bevollmächtigte des Vorstandes, AOK Hessen, Germany
 Gordon Liu, director, China centre for health economic research, Peking University National School
of Development, China
 Mark McClellan, Margolis professor of business, medicine and health policy, Duke University, US
 William McColl, vice-president for policy and advocacy, AIDS United, US
 James Morrow, general practitioner and CEO, Granta Medical Practices, UK

Axel Mühlbacher, professor of health economics and healthcare management, Institut
Gesundheitsökonomie und Medizinmanagement, Hochschule Neubrandenburg, Germany
 Yukiko Nishimura, president and founder, Advocacy Service for Rare and Intractable Diseases’ multi-
Stakeholders, Japan
 Eleanor Perfetto, senior vice-president strategic initiatives, National Health Council, US
 Kawaldip Sehmi, CEO, International Alliance of Patients’ Organisations, UK
 Francesca Sofia, chief scientific officer, Federazione Italiana Epilessie, Italy
The report was written by Paul Kielstra and edited by Elizabeth Sukkar of The Economist Intelligence
Unit. The development of the scorecard and survey was led by Anelia Boshnakova, Alan Lovell, Anisiah
Shazlin and Samyukta Balsubramani of the EIU Healthcare team.
February 2019

EXECUTIVE SUMMARY
All medical care should respect individual patient needs, preferences and values. Healthcare systems
around the world, though, are struggling to put in practice this apparently simple proposition.
Traditionally, medical care, in general terms, has been arranged around providers and the services they
could give to the patients needing them. Such health systems have, over many years, had substantial
successes in increasing human health and longevity. Nevertheless, in recent decades rising costs mixed
with social and technological changes—which simultaneously decreased the information asymmetry
between clinician and patient, changed the kind of service individuals expect in a host of areas, and
undermined social deference, which re-enforced the traditional status of medical personnel—have
driven the need for a greatly restructured approach to care provision.
The result has been the increasing policy emphasis on a shift toward value-based care, which
focuses on the outcomes of treatment rather than the inputs. In defining value, advocates of such
arrangements stress the need to consider not simple clinical outcomes, but those that matter to
patients. The concept of “patient value” in this report goes slightly further—not only do the outcomes
have to be those of importance to patients, the assessment of that importance needs to be done with
and by patients.
Health system provision dedicated to improving such value can no longer be organised around
clinicians or budgets, but integrated around patients themselves and taking into account their overall
individual health needs rather than simply focusing on single diseases as they appear. Patient-centred
care takes this even further, with the patient having an active role in everything from care pathway
design to their own treatment decisions.
Such healthcare represents a huge transformation, both in terms of culture and organisation, but does
not throw the baby out with the bathwater. Clinicians remain a key part of successful delivery and the
experts in what medicine can achieve. Patient-centred care is better understood as a shift from “doctor
knows best” to “doctor and patient both have important knowledge to bring to the table”.
This transition toward patient-centred care designed around maximising patient value has already
begun in many countries, but the degree of change is uneven in different countries and also across the
myriad elements of healthcare systems within those states.
To examine the progress of the evolution so far, and draw lessons from it for the future, The Economist
Intelligence Unit has created the Patient-Centred Care Scorecard. This looks at how well health
systems in nine countries—Brazil, China, France, Germany, Italy, Japan, Spain, the UK and the US—
are doing on a range of metrics relevant to achieving comprehensively patient-centred healthcare
provision. Accompanying this effort was a programme of 13 expert interviews, a survey of 45 patient
groups and other stakeholders, consultation with an advisory board made up of leading authorities,
and extensive desk research.

The project’s key findings include:
Progress toward patient-centred care to date is far from complete. The scorecard considers how
well countries are doing across various areas essential to the existence of patient-centred care. These
are sorted into four broad domains: the existence of policy; the provision of care in general; the delivery
of that care in a patient-centred way; and the role of patients and their representative groups in the
health system. These in turn drew on the results of a total of 11 indicators and 26 sub-indicators that
measured particular issues of relevance to each domain. By design, none of the indicator criteria are
very demanding. Good results across every one of them would indicate a solid foundation on which
to build patient-centric care rather than its full achievement. Nevertheless, every area has at least one
area of low alignment with patient-centred care, and overall low and moderate alignment is the most
common outcome. Even the UK, which had the most consistently good results, has developed only
islands of progress rather than system wide transformation.
Countries have committed to patient-centred care, but progress on detailed policy remains
mixed. Every country in the scorecard has adopted an overarching strategy to become more patient-
centred. Most also have a formal statement of patient rights of some kind. However, in other areas
crucial to embedding patient-centricity over which policymakers have significant influence, progress is
less common: less than half of countries have policies on shared decision-making, with accompanying
decision aids even more rare; extensive use of value-based, rather than fee-for-service, payments also
occurs in just four of nine; and although healthcare curricula in eight study countries contain some
element of training in patient-centricity, expert interviews indicate that such efforts are widespread
in none. Another sign of slow progress toward patient-centricity overall is that the results on these
indicators, however mixed, are far more positive on average than those in other parts of the scorecard.
Little progress toward patient-centricity beyond policy. The scorecard and research indicate that
the health systems being measured are doing their existing tasks in a more patient-friendly manner.
For example, booking appointments for primary care physicians or one’s usual doctor—as distinct
from specialists—is now in many scorecard countries a relatively easy task. Patient access to their own
records is enshrined in law in seven of nine study countries. The broader shift toward patient-centred
care, however, has been much slower, with scores for personalisation and integration of treatment
still low on average. For example, only France and the US have medical appointments that average 15
minutes in length, and just the UK has guidelines for integrated multi-disciplinary team care for all of
five diseases the study used as proxies in the scorecard. Even access to health records is more limited
than the law indicates, with technological barriers or lack of roll-out restricting it in practice in most
study countries.
Truly patient-centred care will need to look beyond clinical interventions. One implication of
this slow change is that it will take even longer for health systems to consider tackling, where possible
and appropriate, social determinants of health. Some progress is taking place in the US, where many
insurance providers are looking at how to address these issues for their members. The efforts of

Humana, a US-based insurance company, in partnership with other relevant organisations to reduce
food poverty and social isolation show what this might look like if it becomes more common.
Relevant measurement is still too rare on the ground. In our survey, patient group respondents
cited a focus on outcomes that matter to patients as the most important element of patient-centred
care. Finding out whether such outcomes are being achieved means determining what those metrics
are and measuring them. This has yet to take place on any meaningful scale. Only one country, the
UK, has any widespread use of Patient-Reported Outcomes Measures (PROMs) and the number of
procedures for which PROMs are used there has declined. Efforts are taking place to create metrics
that look further beyond clinical results, such as Patient-Reported Experience Measures or Patient-
Centred Outcomes Measures, but their use is also unusual. The same is true of patient preference
surveys. It is not simply a matter of starting to measure; health systems will need to change training,
workflows and financial incentives to incorporate such essential data in a meaningful way. A similar
set of problems also faces the integration of patient-generated health data, such as information from
fitness trackers or home medical devices.
A lack of patient engagement can undermine efforts at patient-centred care. Many of the
national scorecard results can be explained by the amount of official attention that patient-centricity
has received over the years. China, however, is an unusual case. It has some of the weakest scorecard
results, but patient-centred care has been a policy priority since 1997 and the government has invested
substantial funds into general healthcare reform over the past decade. One reason for its lack of
progress toward patient-centricity is that healthcare reform, while very much “for the patient”, is not
“by the patient”. A failure to engage with those receiving care helps explain ongoing low patient interest
in primary care and hostility of patients toward clinicians in China.
Patient engagement needs to become expected for every kind of patient. Progress toward
patient-centricity varies by disease group. In some cases, such as HIV/AIDS, patient advocacy has
broken down earlier barriers to engagement between clinicians and patients. Unfortunately, for
certain other conditions in other places, such as epilepsy in Italy, many barriers remain strong. Part
of the solution will be a greater willingness of patients themselves to take an active role in their care.
Expecting each community of people living with a different disease to go through the same fight in
turn, however, is wrong. Health systems need to make clear to patients and their caregivers that they
are welcome to co-create their own care to the extent that they wish. This will also require taking the
initiative to make the tools and processes needed to support co-creation, such as decision aids and
shared decision-making, far more widespread.

CHAPTER 1:
INTRODUCTION:
REFOCUSING MEDICINE
Echoes of a long-established hierarchy
The most striking feature for today’s reader of the Hippocratic Oath—the ancient Greek launchpad
of Western medical ethics—is almost certainly the patient’s relative absence. The new doctor swears
loyalty to gods and fellow professionals, then to help the ill according to “my ability and judgement”,
but makes no promise to ask patients anything, let alone what they might hope for from treatment.1
Patients are to be objects of genuinely solicitous care, but apparently not independent agents and
certainly not partners.
Although the oath some time ago became a historical artefact, the paternalism it embodies has
remained ingrained in healthcare far longer. Worth recalling is how just relatively recently the
importance of any patient viewpoint has been acknowledged. Even in the US, where patient rights
efforts often spearhead global developments, the concept of “informed consent” appeared only in 1957
with a court ruling.2 The more extensive idea of patient autonomy gained widespread recognition as
late as 1979 with the publication of Thomas Beauchamp and James Childress’s seminal The Principles
of Biomedical Ethics, and it was not until 1987 that the Picker Institute developed the principles of
patient-centred care,3 which have since become an influential framework. Finally, it was only in the
past 15 years or so that medical associations have given up resistance to patients bringing information
found on the internet to discussions with clinicians. 1. Hippocrates, The Oath, Loeb Classic
Library.
Meanwhile, genuinely shocking examples of medical paternalism in developed countries from this
2. Dennis J Mazur, “Influence of the law on
century remain easy to find. In Japan, as late as 2005 many doctors did not disclose cancer diagnoses risk and informed consent,” BMJ, 2003.
to patients, despite a majority of the latter wanting to know,4 while the common use of electroshock
3. https://www.picker.org/about-us/picker-
therapy, sometimes against patients’ wishes and without legal review, gave rise to concerns in principles-of-person-centred-care/
Australia’s state of Victoria in 2011.5 A similar lack of even basic communication occurs in developing
4. H Miyata et al. “Disclosure preferences
states too: a 2008 survey found that under half of relevant specialists in Brazil informed patients of regarding cancer diagnosis and prognosis:
Alzheimer’s diagnoses,6 and a small 2018 study in China revealed that more than half of patients did not to tell or not to tell?” Journal of Medical
Ethics, 2005.
know they had cancer until they started chemotherapy.7
5. “Mental health care inquiry,” The Age,
These examples are extreme in degree, but not necessarily unique in nature. Although most clinicians September 6th 2011.
would now find them troubling, even today, ancient attitudes are still present, notes Roy Beveridge,
6. Irina Raicher et al, “Alzheimer’s disease
the chief medical officer at Humana who has also practiced oncology for more than 20 years. “I find diagnosis disclosure in Brazil: a survey of
there is still a viewpoint in medicine which equates to ‘I went to medical school, so I know what is best specialized physicians’current practice and
attitudes,” International Psychogeriatrics,
for you.’ Even physician language uses terms like ‘the patient was not compliant with medical orders.’”
2008.
The patient might not follow orders, however, not through uninformed rebelliousness but because of a 7. Yuxiu Liu et al, “Disclosure of cancer
substantially different viewpoint. A 2013 review of 46 studies looking at doctor and patient preferences diagnosis in China,” Cancer Management
and Research, 2018.

found that most revealed a marked disparity between the wishes of the two.8 In a battle of aphorisms,
the doctor who knows best seems to be clashing with the customer who is always right.
The rise of value-based healthcare

The preceding description is simplified to make a point about the durability of medical paternalism and
the essential backdrop it provides to current debates. Such attitudes within healthcare, however, are
only one part of a much more complex picture. Nearly every expert interviewed for this study echoed,
to some degree, the words of Eleanor Perfetto, senior vice-president of the US National Health Council:
“Paternalism is still there, but things are changing.” This shift is part of a broader transformation, which
has accelerated over the past decade, in understanding the goals of healthcare and how it should be
delivered.
The transition was not inevitable on purely healthcare grounds. Provider-controlled and focused
systems have, whatever their faults, brought substantial health improvements. Life expectancy has
risen steadily for more than a century and a half across much of the world reflecting, in part, the
progress of health systems against various diseases.9
However, a series of important social and economic trends—some decades old, some more recent—
have been driving change.
The most prominent of these are:
the impact on patients of various human rights movements across much of the world;

increasing expectations by individuals of all their health service providers, driven by the

experience of ever more convenient and technology-enabled consumer marketplaces;
the shift in the disease load away from acute, communicable conditions to chronic disease

requiring more continuous, integrated care;
the experience of living with such chronic diseases, through which patients typically develop their

own expertise over years of being affected;
the greater availability of information related to diseases, potential treatments and the patient

experience, especially with the spread of the internet;
the ability of improved technology to track and measure a far wider range of health outcomes

than previously; and
the need to curb the ever-growing cost of healthcare systems frequently underwritten by

8. Axel Mühlbacher and Christin Juhnke governments that are facing resource limitations, with the resultant increased power that payers
“Patient Preferences Versus Physicians’
Judgement: Does it Make a Difference in
are demanding from clinicians over decision-making.
Healthcare Decision Making?” Applied
Health Economic and Health Policy, 2013. These developments have collectively brought into question the financial sustainability of provider-
focused and -controlled healthcare, while reducing the knowledge asymmetry and social deference
9. Jim Oeppen and James Vaupel, “Broken
Limits to Life Expectancy,” Science, 2002. that undergirded the relative power of clinicians within health systems in the past. The old ways of

doing things, whatever the very real benefits they brought, are no longer fit for modern medical,
budgetary or social conditions.
Any replacement, though, needs to provide at least equally effective care, and ideally better. This is
not simply a matter of dethroning clinicians and putting patients in their place, says James Morrow,
a general practitioner (GP) in England’s NHS. In his experience, although many patients living with
chronic conditions “are experts in their diseases and physicians are really there to help them in
managing those conditions, unfettered consumerism in healthcare can lead to numerous undesirable
outcomes, such as misuse of medications, risks of well-intentioned but misguided investigations, and
therapeutic interventions more driven by emotion than evidence. There has to be balance.” At the very
least, the healthcare provider needs to define what is possible.
Moreover, health systems cannot simply set aside their moral and legal responsibilities in the name
of patient choice. Isabella Erb-Herrmann—Bevollmächtigte des Vorstandes (representative of the
management board) at German insurer AOK Hessen—explains that paying for innovative new options
that a well-informed patient might want, but that have not been signed off by the medical authorities,
can lead to liability if something goes wrong. “These are the really tricky questions. Patient value
needs to protect patients.” Dr Morrow adds that “the elephant in the room with patient partnership is
medical negligence and litigation, which constrain and drive doctor behaviour through fear rather than
necessarily doing what patients want.”
Two interrelated concepts are central to the current thinking on how to square this circle. This report
uses their most common labels, “patient value” and “patient-centred care”, although the terminology
is far from fixed.
The debate around value-based healthcare (VBHC), although more recent than both patient value
and patient-centred care, has reshaped the understanding of both. The essence of VBHC is to
move healthcare from a focus on rewarding medical interventions or inputs, such as the number 10. The first major statement explaining and
of appointments or operations, toward one on value. The latter is defined as the outcomes of advocating VBHC was Michael Porter
and Elizabeth Teisberg, Redefining Health
interventions divided by their cost. In other words, results matter more than the extent of activity.10 Care: Creating Value-based Competition
The hoped-for impact is not only better outcomes but, eventually, a reduction in waste and therefore on Results, 2006.
costs within the healthcare system. In this way, patients and payers are both further ahead.
11. Lawton Burns and Mark Pauly,
“Transformation of the Health Care
Numerous studies of VBHC have shown improved clinical outcomes of different kinds. To date, Industry: Curb Your Enthusiasm?” Millbank
evidence for cost benefits has been mixed.11 This, though, may reflect the variety of value-based Quarterly, 2018; David Bailey, “Value-
Based Care Alone Won’t Reduce Health
approaches being trialled, start-up costs and time to gain familiarity with new processes. A recent
Spending and Improve Patient Outcomes,”
survey of 120 American payers suggests that economic benefits have finally begun to appear. It found Harvard Business Review, 2017.
that, on average, value-based care strategies had reduced medical costs at organisations that had
12. ORC International, Finding the Value in
adopted them by 5.6% in the past year.12 Value Based Care, 2018.
Whatever the teething problems, VBHC now dominates thinking on healthcare reform. It is a formal 13. For an extensive discussion of value-based
care and its state in various countries,
policy goal in places as diverse as the US, the UK, Japan and several Spanish regions, to name a few
see the Economist Intelligence Unit’s
jurisdictions.13 dedicated web hub.

But whose value matters?

The obvious issue in a value-based system is how, and by whom, “value” is defined. The debate is far
from moot. In countries with a single-payer health system, such as the UK, one understanding of value
is how to distribute inevitably limited resources between diseases and regions in order to have the
biggest positive impact on population-wide health. For a health provider, however, it can simply be
another way to describe basic efficiency.14
VBHC advocates, though, typically see value as pertaining to outcomes that matter to the patient.
In practice, however, the patient voice has often been absent when selecting the outcomes that
ostensibly matter in this way. As Alan Balch, CEO of the US National Patient Advocate Foundation,
puts it, “we have tried to transition to a value-based model without truly understanding what value is
and how to create it for patients. The system as a whole is trying to catch up and learn what it means
for patients.”
Indeed, the extent to which patients have had a meaningful role in creating the growing number
of value frameworks in the US is unclear, as is the degree of their influence in other countries
despite sometimes having a formal role in certain aspects of healthcare decision-making.15 For
Axel Mühlbacher, professor of health economics and healthcare management at the Institut
Gesundheitsökonomie und Medizinmanagement (Health Economics and Healthcare Management
Institute) in Germany, such a situation is untenable.
“Value cannot be defined without the consumer. Who will define it for you and me if it is not us? We
transferred some decision rights to healthcare systems because of information asymmetry, but we did
not give them the right to put in their value judgements rather than the patient’s preferences. There is a
fine line between democracy and dictatorship.” Similarly, Ms Perfetto explains that any new framework
to define value “should look at what patients want and what will help them reach their goals.”
Accordingly, this report, when discussing patient value, or value in general, treats it as based on
outcomes that not only matter to patients but are chosen by them as well.
The implications of such a change in perspective go much further than measuring similar outcomes
with slightly adjusted scales. Several differences are particularly relevant to discussions throughout
this report. First, the outcomes that patients value frequently go beyond traditional notions of clinical
results to include patient experience. Mr Balch notes that “different treatments can have different
14. For a discussion of the different concepts
impacts on transportation costs, caregiver burden, or work disruption. In some cases, there may be
of value, see Muir Gray et al, How to Get
Better Value Healthcare, 2017. only one clinical option that is ethically available, but even then there are other things about care which
you can personalise.”
15. Eleanor Perfetto et al, “Value to Whom?
The Patient Voice in the Value Discussion,”
Value in Health, 2017.
Next, the outcomes that matter will go far beyond traditional ones. The US National Health Council
speaks of a “patient trifecta”—the need to balance potential clinical outcomes, personal circumstances
16. Marc Boutin, “The Patient Trifecta: A Basis
and life goals when choosing between treatment options.16
for a Truly Patient-Centric Health System,”
American Journal of Pharmacy Benefits,
2015

Finally, individual patients may see far different outcomes as being ones that matter. Dr Beveridge
explains “a 70-year-old is not usually aiming to run a first marathon but wondering ‘how do I care
for myself so that I can see my grandchild’s wedding?’” Similarly, given a choice of side effects from
different treatments, two otherwise similar patients might well disagree on which they would rather
avoid where possible.
This poses cultural challenges for health systems focused on addressing variations, notes Dr Morrow.
“We need to hammer out unacceptable variation in either access to, or outcomes from, interventions
which may reflect technical competence. Variation in terms of choices, though, should be encouraged.
We need to be careful not to move into statist healthcare, but allow people to make what may seem to
us unwise decisions for themselves, as long they understand what they are doing.”
Patient-centred care: The optimal version of value-based healthcare

VBHC aims to achieve a fundamental reconfiguration of healthcare provision. Instead of organising it
around those administering medical interventions, a focus on results leads to shaping provision around
the patient. This implies the creation of continuous, integrated care provided by multidisciplinary
teams to replace disparate interventions often previously siloed by medical expertise.
Such an approach has numerous advantages, notably including:

more holistic patient care, which includes prevention and education as well as medical
interventions, and when individuals do present with a specific medical need the choice of therapy
is shaped by the broader context of their specific situation, including, for example, possible
multiple morbidities or living conditions;
 co-operative treatment in which clinicians work together to adjust to such particular needs of
the patient;
 more continuous care, which is easier for the patient to navigate, thereby improving the patient
experience and reducing the number who drop out; and
 reduced cost through eliminating duplication of tests and interventions.
As with the concept of value, perspective matters to how things should be organised. In theory,
integrated care could simply be a refocused, if more efficient, form of clinician-dominated provision.
Patient-centred care, an idea that predates the VBHC debate, but conceptually has become
intertwined with it, goes further. As Ms Perfetto puts it, “patient-centred means you are dedicated not
to doing things for patients, but with patients.”
Francesca Sofia, who is the chief scientific officer of the Federazione Italiana Epilessie, gives an example
of the difference from a recent experience at a large Italian hospital. In that institution, she was told,
patients were welcome to give information to other patients or engage in auxiliary activities, but that
something like a patient advisory board that could discuss research or treatment policies—a move
toward meaningful patient-centricity—was “out of the question”.

Going beyond such specific instances, the general meaning of patient-centred care in practice
is complex. Indeed, the terminology itself is not fixed but continues to evolve: the World Health
Organisation, for example, prefers the term “integrated people-centred care” to emphasise the need
to look beyond healthcare systems to health in the community. The core idea remains but the words
used to describe it may change in a few years.
Amid these terminological differences, several organisations have produced definitions that tend to
boil down to lists of key elements.17 These inevitably vary, but more in detail than substance. Broadly
speaking, the items on these lists fall into three general categories:
 The first is a necessary pre-condition of any meaningful, integrated healthcare: access to an

effective, efficient system organised around the patient journey.
 The second covers the status and authority within the system of patients (as well as of families
and carers where relevant): they need to be co-creators of care with control over choices involving
their own individual treatment as well as holding a meaningful role, where relevant, in broader
system decisions, such as funding choices.
 The third category covers the processes and mechanisms needed throughout the healthcare
system to make possible, and to support, both integrated care and an active patient role. This
includes a wide range of items, from, for example, patient education and activation measures,
through system measurements that reflect appropriate choices on valued outcomes, to financial
incentives that reward the creation and maintenance of integrated care pathways.
Worth stressing amid all the calls for change is that advocates of patient-centred care are not looking
to replace healthcare providers but for them to engage with the people they are treating more fully.
17. For some of the more influential, see A finding from the survey of patient groups, conducted as part of the research for this report, is
Picker Institute; “Picker Principles of
instructive here. When asked about the biggest contribution that information technology (IT) could
Person Centred Care;” Institute of
Medicine, Crossing the Quality Chasm: A make to patient-centricity, many respondents pointed to IT’s ability to simplify interaction with
New Health System for the 21st Century, clinicians, either by opening new channels of communication or making it easier to book traditional
2001; World Health Organisation,
“Framework on integrated, people-
medical appointments. Direct access to their own health records and independent data analysis,
centred health services,” Sixty-ninth World by contrast, were cited as relevant by only a minority of respondents. Patient-centred care is about
Health Assembly A69/39: Provisional
partnering with, not removing, clinical experts.
agenda item 16.1, 2016.
18. Cathal Doyle et al, “A systematic review But does patient-centred care work? The answer depends on what you are measuring and by what
of evidence on the links between yardstick. Studies have tended to look at specific initiatives that involve switching to a more patient-
patient experience and clinical safety
centred approach in a particular area. Various literature reviews have shown either a positive link, or at
and effectiveness,” BMJ Open, 2013; Lori
Delaney, “Patient-centred care as an least no negative one, between patient-centric approaches and clinical effectiveness.18
approach to improving health care in
Australia,” Collegian, 2018. Clinical measures, however, are far from the only valid ones. A patient’s emotional reaction to care
is also important. Here, patient-centricity also appears to help. Extensive Japanese surveys have
19. Tomoko Kawashima, “What makes
Patients Satisfied with their Healthcare? found over the past two decades that health system user satisfaction is associated with good patient-
Nationwide Patient Experience Surveys clinician communication and respect for patient autonomy.19 Considering at length the gains outside
in Japan,” Journal of Nursing & Care, 2015.

of traditional clinical outcomes, however, is difficult because, as discussed next, a current weakness in
patient-centred care efforts is that appropriate metrics are lacking.
Charting uneven progress

Whatever the measurement issues, in rhetorical terms, the notions of patient value and patient-
centricity have won the day. As Mr Mühlbacher notes “there is hardly a health system that doesn’t claim
to be patient-oriented. The question is, ‘how are they incorporating that perspective?’”
The answer varies widely by geography and level of economic development. Kawaldip Sehmi, CEO
of the International Alliance of Patients’ Organisations, reports that in Asia, especially in developing
countries, “paternalism is still there. Little interest is paid to the patient perspective. It is a beggars-
can’t-be-choosers approach for patients.”
Things are better in Europe, but even there substantial disparity remains, notes Chris Graham, the CEO
of the Picker Institute, Europe, a charity dedicated to advancing patient-centred care. These systems,
he says, are at different places “on a learning curve: some are moving further toward active patient
involvement; others are less advanced, but soliciting patient feedback is becoming normal; others still
are further back, trying to grasp the issue.” He adds that progress generally follows economic growth.
The degree of progress toward a more patient-centred model varies widely, and not only by geography
and wealth. Change within different elements of this multi-faceted shift, even in single countries, is also
frequently uneven. Mr Balch notes that many providers have made advances in listening to patients,
but “healthcare systems have multiple facets that impact patient care such as clinical pathways,
electronic heath record systems, quality measurement and decision aids. In many of these other areas
there remains a lot of paternalism, for lack of a better word. Either through omission or commission,
they do not incorporate patient views into their design principles.”
Amid these difficulties, a large majority of respondents to our patient group survey agreed that
policymakers in their countries are committed to learning from patient-centred care practice
elsewhere. Given this aspiration, and the wide variations in progress in different countries, now is an
appropriate time to consider how well different countries are doing in pursuit of patient value and
patient-centricity. The rest of this report examines this in detail and, in so doing, aims also to reveal
some of the barriers to progress that need addressing.

CHAPTER 2:
THE PATIENT-CENTRED CARE

SCORECARD
Introducing the scorecard
In order to examine the transition of healthcare systems to patient-centred care models, The
Economist Intelligence Unit created the Patient-Centred Care Scorecard. It assesses progress across
four domains in nine major economies around the world: Brazil, China, France, Germany, Italy, Japan,
Spain, the UK and the US. Assessment in these domains in turn reflects how these countries measure
against 11 representative indicators, which themselves rely on 26 sub-indicators.
The four domains are:
 Patient-centred strategies and policies, including formal policies, legal recognition of patient
rights, and using value-based payment systems as an incentive for the adoption of patient-
centred care.
 The delivery of care, including access, continuity of treatment and training in patient-centricity.
 The provision of care in a patient-centred way, including personalisation and patient involvement
in decision-making.
 The role of patients, including the use of patient-reported measurements, patient empowerment,
and the role and nature of patient groups in the measured countries.
The indicators and sub-indicators are of various types. Some are binary, recognising the existence or
not of a desirable element of patient-centred care, such as integration of relevant training in national
curricula or the use of patient-reported outcomes measure (PROMs) in routine care. Others are more
quantitative, such as the average number of minutes in a typical appointment with a clinician. Others
still rely on existing Economist Intelligence Unit output, such as the 2017 Global Access to Healthcare
Index (for a more detailed description of the domains and indicators, see the research report, “Adoption
of patient-centred care: Findings and Methodology; available at patientcentredcare.eiu.com).
Use of the scorecard requires two caveats. First, such an exercise is constrained by the availability of
internationally comparable data. Some indicators were difficult to include because the information
is not accessible or even existent. In other cases, we have used proxies, such as the length of clinical
appointments, to judge the ability of patients to discuss complex multi-morbidities in individual cases.
Second, a benchmarking exercise like the scorecard is impressionistic rather than precise. The
scores are a rough indicator of how countries are doing, especially in a field where success requires
simultaneous progress on all fronts. This tool, rather than a way to name winners and losers, is meant
to start discussions about existing strengths on which to build, and weaknesses that require attention.

The results
Table 1 shows the scorecard’s national results by domain, indicator and sub-indicator.
Table 1: Patient Centred Care Scorecard by domain, indicators and sub-indicators (using numeric values for scoring)
Domain # Indicator Sub-indicator Score Brazil China France Germany Italy Japan Spain UK US
range
Strategy 1.1 Strategic plan and National strategy for patient-centred 0-3 2 2 2 2 1 2 1 2 1
patients’ bill of rights care
Bill/Statement of patients’ rights 1 0 1 1 1 0 1 1 1
1.2 National quality n/a 0-2 0 0 1 0 0 0 1 2 1
standards for
monitoring the
implementation of
patient-centred care
1.3 Value-based n/a 0-2 1 1 2 1 2 1 2 2 1
payment systems as
provider incentives
for implementation
of patient-centred
care
Provision 2.1 Education and Education and training about the 0-2 1 1 1 1 1 0 1 1 1
support for principles of patient-centred care
healthcare staff for health professionals as part of the
curriculum in medical/nursing schools
Support of health professionals in 0 0 1 0 0 0 1 1 0
service settings
2.2 Continuity of care Existence of national clinical practice 0-4 0 0 0 0 0 0 0 1 0
guidelines recommending co-ordinated
and integrated patient care with
multidisciplinary teams (selected
conditions)
Accessibility of primary care, family 0 0 1 1 1 1 1 1 1
doctor or usual doctor services for all
Ease of scheduling doctors’ 0 0 1 1 1 1 1 1 1
appointments
Ease of navigation of health services 0 0 0 0 0 0 0 0 0
2.3 Patient access to Access to healthcare 0-3 1 0 2 2 1 1 1 2 1
healthcare Access to innovations in healthcare 1 1 1 1 1 1 1 1 1
Delivery 3.1 Personalised Personalised approach to patient care 0-3 0 0 0 0 0 0 0 1 0
care according to Holistic approach to patient care taking 0 0 2 0 0 0 1 0 2
patients’ values and account of co-morbidities
preferences
3.2 Patient involvement National policies for shared decision- 0-4 1 0 1 1 0 0 0 1 1
in shared decision- making
making Patient aids for shared decision-making 0 0 1 1 0 0 1 1 1
Patients’ right to access their own health 0 0 1 1 1 1 1 1 1
record
Use of decision quality measures 0 0 0 1 0 0 0 1 1

Table 1: Patient Centred Care Scorecard by domain, indicators and sub-indicators (using numeric values for scoring)
Domain # Indicator Sub-indicator Score Brazil China France Germany Italy Japan Spain UK US
range
Patients 4.1 Use of patient- Use of PROMs in routine care 0-2 0 0 0 0 0 0 0 1 0
reported outcome Patient validation of PROMs 0 0 0 0 0 0 0 0 0
measures (PROMs)
4.2 Patient advocacy Existence of independent patient 0-4 1 1 2 1 1 1 1 2 2
groups organisations with transparent funding
Patient/patient organisations 1 0 1 1 1 1 1 1 1
involvement in policy development
(eg, national plans/strategies/Health
Technology Assessment [HTA])
Patient/patient organisations 0 0 0 0 0 0 0 0 0
involvement in monitoring activities for
policy implementation (eg, national
plans/strategies/HTA)
4.3 Patient Availability of reliable patient 0-3 1 0 1 1 1 1 1 1 1
empowerment information (targeted at patients)
Availability of health education 1 1 1 1 1 1 1 1 1
initiatives (targeted at the general
population)
Use of patient empowerment 0 0 0 0 0 0 0 1 1
assessment tools by healthcare
providers
Source: For a detailed explanation of the scoring, see the research report, “Adoption of patient-centred care: Findings and Methodology”, February 2019 (available
at: patientcentredcare.eiu.com)
Interpreting these requires further context. The indicators measure, by and large, foundational
necessities of patient-centred care rather than challenging, long-term aspirations. For example, they
include the existence of a patient bill or statement of rights; the availability of reliable information for
patients on their condition; and easy scheduling of appointments with one’s usual physician. These
should be straightforward to achieve.
And as noted previously, the transition to patient-centred care requires change in a host of areas to be
truly meaningful. Every element is important for the whole to work. For example, integrated care that
notionally involves consultation with patients on their preferences but that neither pays the clinicians
for the time involved in such discussions nor gives those being treated the support they need to make
informed choices will fall far short of the goal.
This means that a good national result on the scorecard would involve high scores across domains and
indicators. Table 2 shows that this is far from being the case. It uses the actual scores that countries
have received compared with the number of points available. It then converts these numbers into an
assessment of whether health systems are highly, moderately or poorly aligned with patient-centred
care on each indicator. A country that has all the foundations in place to allow the development of
patient-centred care would have all high scores.

None in our scorecard do so, with most doing far worse. Every country, however, has at least one area
of low alignment. High alignment is the least common result across the scorecard, with about only a
quarter of indicators reaching that level. In short, the clearest lesson from the scorecard is that patient-
centred care is a long way off.
Table 2: Scorecard by alignment to patient-centred care

Key: Alignment of health systems with the principles of patient-centred care
High
Moderate
Low
Domain Indicator Brazil China France Germany Italy Japan Spain UK US

Strategy Strategic plan and High Moderate High High Moderate Moderate Moderate High Moderate
patients’ bill of rights
National quality Low Low Moderate Low Low Low Moderate High Moderate
standards for monitoring
the implementation of
Value-based payment Moderate Moderate High Moderate High Moderate High High Moderate
systems as provider
incentives for
implementation of
Provision Education and support Moderate Moderate High Moderate Moderate Low High High Moderate
for healthcare staff
Continuity of care Low Low Moderate Moderate Moderate Moderate Moderate High Moderate
Patient access to Moderate Low High High Moderate Moderate Moderate High Moderate
healthcare
Delivery Personalised care Low Low Moderate Low Low Low Low Low Moderate
according to patients’
values and preferences
Patient involvement in Low Low High High Low Low Moderate High High
shared decision-making
Patients Use of patient-reported Low Low Low Low Low Low Low Moderate Low
outcome measures
(PROMs)
Patient advocacy groups Moderate Low High Moderate Moderate Moderate Moderate High High
Patient empowerment Moderate Low Moderate Moderate Moderate Moderate Moderate High High
Source: Adoption of patient-centred care: findings and methodology (available at: patientcentredcare.eiu.com)
The countries that seem to do relatively well should not be complacent. The UK has the most “high”
alignments in the scorecard. However, a recent review by National Voices, a British coalition of patient
groups, which looked at various national NHS and social care patient surveys, is less encouraging. It did
find indications of movement toward patient-centred care, such as involvement in decision-making by
those with cancer, but in mainstream care progress had been slight at best. The study concluded that
in the UK person-centred care remains “an ambition, but not yet a priority”.20 20. National Voices, Person-centred care in
2017: Evidence from service users, 2017.

If a country that has more than a third of the “high” results in our scorecard is clearly still seeing such
limited transformation toward patient-centred care, most others will have very far to go. France and
the US, for example, tend to have fewer “high” results, while the rest of Western Europe trails further
behind, but ahead of Brazil and the Asian countries.
Italy sits near the middle of these, and what Ms Sofia says about that country seems to apply more
widely: “In the last ten years, patient-centricity has been much discussed. I see and read a lot about the
possible role of patients in improving outcomes and patient-centricity is increasingly recognised as [a]
way to contain expenditure. However, my impression is that currently it is still a buzzword. We have not
given the patient a key role in the system itself.”
Looking beyond the results, the scorecard highlights three further challenges that will need to be
overcome for progress to occur:
 a dichotomy between policy aspiration and practice;
 another dichotomy between general health system access and personalised care; and
 a weakness in measurement and the kind of metrics being used.
These are discussed in turn in the following sections.

CHAPTER 3:
PATIENT-CENTRICITY:
THE GAP BETWEEN GRAND
STRATEGY AND DETAILED POLICY
Declarations aplenty but fewer detailed plans
“There is a policy level push toward the idea that what the patient wants matters,” says Mr Graham.
This comes through clearly in our scorecard, with countries doing very well in creating the most basic
elements of policy frameworks to promote patient-centricity.
For all but three countries in this study, such documents cover much or all of the health system. The
outliers—Italy, Spain and the US—have still all seen significant progress in this direction, especially,
for the first two, in primary care. Rather than lack of interest, their lower scores reflect their greater
difficulties in creating comprehensive national policies because responsibility for care provision is
divided between either numerous regions or, in the US, an even larger number of distinct organisations.
Similarly, every country except China and Japan have some statement or bill of patient rights. In Brazil,
this is enshrined in the constitution. Mr Graham adds that this kind of commitment is an essential first
step to change, but “the question is ‘how much is this policy push being picked up by health providers?’”
The answer is mixed. Three other scorecard indicators cover areas over which policymakers and health
officials have substantial control. One is the existence of national or widespread policies or guidelines
to promote shared decision-making (see Table 3). These exist in only five of the nine study countries:
Brazil, France, Germany, the UK and the US. In Brazil, though, scorecard research found that the spread
of shared decision-making is still lagging in practice. Meanwhile, in countries without a policy, progress
toward shared decision-making can be slight.
Yukiko Nishimura, president and founder of the Advocacy Service for Rare and Intractable Diseases’
multi-Stakeholders in Japan, explains that, in her country currently, “the doctor thinks that treatment
is being carried out after conveying the treatment policy to the patient. As there is information
asymmetry between the two sides, the assumption is that the patient will follow the doctor’s
instructions.”
Table 3: Shared decision-making

Indicator Sub-indicator Brazil China France Germany Italy Japan Spain UK US
Patient involvement National policies 1 0 1 1 0 0 0 1 1
in shared decison- for shared decision-
making making
0 = No/Not reported; 1 = National policies for shared decision-making exist.

Lack of progress on this indicator has profound implications for change elsewhere. Mr Balch explains
that “when you start to design truly patient-centred care, the crucial thing is shared decision-making
and goal-concordant care planning that is co-created with the patient.” This goes far beyond informed
consent to true co-creation of care (see Box).
A second lever over which policymakers exercise substantial control is funding. Getting this right
is another fundamental requirement for success, explains Mark McClellan, Margolis professor of
business, medicine and health policy at Duke University: “Taking steps toward patient-centred care
means moving payment systems to focus on people and the best outcomes that they care about.”
Again, the scorecard shows only partial progress (see Table 4). Every study country engages in some
use of value-based payment systems, but in five of nine (Brazil, China, Germany, Japan and the US)
this remains small scale. Moreover, of the other four, the extent of value-based care in Spain varies
markedly by region.21 Meanwhile, in the UK, another country scoring well for use of such funding, Dr
McClellan notes that the practice is yet to break down many provider silos.
Table 4: Value-based payments

Value-based payment n/a 1 1 2 1 2 1 2 2 1
systems as provider
incentives for
implementation of patient-
centred care
0 = No/Not reported; 1 = Value-based payment systems are used as provider incentives for the implementation of patient-centred care in some parts of the health system;
2 = Value-based payment systems are used as provider incentives for the implementation of patient-centred care across the whole health system.
A third potential area where policy or regulation could engender change over time is clinician
regulation and training. Here, eight countries score for at least some evidence of attention to patient-
centred care within one healthcare-related profession (see Table 5). Even in the outlier, Japan, interest
in the topic is not completely absent. Although scorecard research uncovered no sign of formal efforts
21. Economist Intelligence Unit, Value-based

to integrate patient-centricity into medical education, Ms Nishimura reports that “in recent years,
healthcare country snapshot: Spain, 2016. attempts to understand patients, such as inviting patients as guest speakers, are expanding.”
Table 5: Education and support for healthcare staff

Education and Education and training around 1 1 1 1 1 0 1 1 1
support for the principles of patient-centred
healthcare staff care for health professionals as
part of the curriculum in medical
nursing schools
Support of health professionals 0 0 1 0 0 0 1 1 0
in service settings
Education and training: 0 = No/Not reported; 1 = Education and training about the principles of patient-centred care for health professionals as part of the curriculum in medical/
nursing schools.
Support of health professionals: 0 = No/Not reported; 1 = There is support for health professionals in service settings.

The scorecard indicator, however, looks for any evidence of some patient-centred education in training
for any medicine-related profession. By design, it does not assess the extent to which these curricula as
a whole prepare clinicians for patient-centred care.
The reason is that no country has reformed education very well in this direction. Experts interviewed
for this study could point to individual institutions doing interesting work in this area, such as the
relatively new Dell Medical School in Austin, Texas, the Radboud University Medical Centre in the
Netherlands and the planned Kaiser Permanente School of Medicine in California. No interviewee,
though, identified any health system seeing widespread change. Mr Sehmi notes that change here,
while taking place, “is a slow process happening piecemeal”. Similarly, in Mr Graham’s experience, “we
have seen curricula adopt the language of patient-centricity, and people leaving medical school have
more understanding of the issue, but we have not seen a lot of patient co-operation or participation
in training.”
As a result, says Ms Sofia, the “medical community is still not prepared to deal with expert patients in
planning of medical care. The integration of patient engagement education in medical school would
greatly accelerate patient-centricity.” Dr McClellan agrees. Although, he says, most new clinicians, as
in the past, care greatly and want to help patients, they remain unprepared for the realities of doing
things in a patient-centred way.
Scoring around shared decision-making, funding and training, then, reflect little advancement as yet
toward patient-centred care. It is worrying though that, as later discussion of the scorecard results
will show, progress here has been notably faster than that seen in other elements of healthcare. As Dr
McClellan puts it, integrated, patient-centred care, despite “incremental steps in the right direction,
remains more a long-term vision and aspiration” than reality.
Barriers to change
Various challenges to progress help explain this halting, uneven improvement. These appear
throughout the report, but several are so fundamental as to be worth noting here.
First, the extent of the shift needed to get from traditional healthcare systems to patient-centric ones is
difficult to over-estimate. As Mr Graham notes, it involves “a rejection of the previous medical model”.
This brings substantial challenges associated with any large change, and healthcare is a field in which
innovation is notoriously difficult.22
Just as important, despite acceptance at the policy level, not every stakeholder is fully on board with the
change or without ulterior motives. In Germany, for example, Ms Erb-Herrmann says that, among others,
physicians “are very slow in changing. They fear that they will lose power and influence: it was nice to
have respectful patients asking, ‘please tell me what to do,’ instead of informed ones coming in saying
‘this is what I think I have.’” Mr Graham adds that “true patient participation can be scary for professionals, 22. For a discussion of the general high
barriers of change in healthcare, see
because inviting non-professionals to have an equal status is a threat to one’s standing.” Addressing this,
Clayton Christensen et al, The Innovator’s
by recognising the separate expertise that patients and clinicians bring, is essential for progress. Prescription, 2009.

Doctors are most often accused of worrying about status, but they are far from alone. A review of
reports on patient-centred care from 2013 found that: “Managers, physicians and nurses all used the
discourse...to imply that their own group was patient centred while other group(s) were not.” Patient
groups, meanwhile, sometimes downplayed the commitment of others and used the concept of
patient-centricity to advocate other, more controversial goals, such as a greater control over decision-
making than many patients want. Overall, the study found that the idea of patient-centricity “can easily
become a weapon on an intergroup battlefield” where the conflict is an old one over relative influence
within health systems.”23
Another potential challenge is cost.24 As Mr Graham explains, inevitably any major change requires
outlay. For example, “a robust survey programme or new job roles will all have costs attached, even
while many providers are struggling with funding.” Ms Erb-Herrmann adds that care that takes patient
preferences seriously will come under pressure to spend more in certain areas. “If you talk about
preferences and values,” she says, “customers most often ask about innovative treatments. When you
talk about innovative treatments, you are talking about more expensive ones most of the time.”
Cost, however, can be a driver of change rather than barrier if understood properly. As Mr Graham
notes, a shift toward patient-centred care needs to, and can, be seen as “win-win”. He cites as an
example that a greater focus on certain patient-centred metrics, such as faster hospital discharges or
fewer unplanned readmissions, can save health systems money. As noted earlier, one aim of VBHC is
to be cost-saving overall, although success in this area has been slow.
Similarly, while patients are certainly likely to be interested in innovative new treatments if they
promise improved results, better informed individuals do not inevitably want more expensive care.
One review of the impact of better information through use of decision aids—tools such as pamphlets,
videos or web-based teaching that brief patients on treatment options, possible side effects and other
relevant considerations—found good statistical evidence that they made patients more knowledgeable
and confident in their choices.
In some cases, such as adoption of a new treatment for diabetes and preventative mastectomies for
23. Sara Kreindler, “The politics of patient-

those with genes associated with breast cancer, use of these aids led to more selecting these newer or
centred care,” Health Expectations, 2013 more radical options. Overall, though, the review found that better informed patients, especially when
considering surgery, tended to opt for more conservative therapies. The latter may actually conserve
24. See, for example, Grant Martsolf et al,
“Cost of Transformation among Primary system resources, although not enough studies had been done on cost-effectiveness to say anything
Care Practices Participating in a Medical with certainty.25
Home Pilot,” Journal of General Internal
Medicine, 2016, which looks at the costs
A shift to patient-centred, integrated care may require investment, but, as with VBHC as a whole, long-
of changing from a traditional primary
care practice to a patient-centred medical term costs need not grow and may even decrease.
home in the US.
A final barrier is that even those well-disposed to patient-centricity are still feeling their way forward in
25. Dawn Stacey et al, “Decision aids for
a very complex field. “A lot of people and organisations are talking about it, but not fully understanding
people facing health treatment or
screening decisions,” Cochrane Database it,” says Ms Perfetto. She adds that the transition will be “multifaceted like any other complex
of Systematic Reviews, 2017 behavioural change and requires making sure that everyone has a common understanding of what it

is, buy-in from the top and throughout the organisation, and a lot of training. You need tools and the
right environment. If any one of these is missing, you are not going to succeed.”
BOX: A RADICAL DUCK: WHAT IS

SHARED DECISION-MAKING?
An advisory board member insisted that an decision is required;
essential element of making health systems
 knowing and understanding the best
truly patient-centred is to “make shared
available evidence; and
decision-making real. It is a radical idea.”
 incorporating the patient’s values and
Unfortunately for something so important, preferences into the decision.
no single, accepted definition exists. A
2007 literature review found that roughly This, however, could describe a kind of
a quarter of studies of the topic either did advanced version of informed consent where
not bother defining shared decision-making the clinician diagnoses a condition and then
or did so in an idiosyncratic way. Later, in

26 presents a menu of options from which
2015 another analysis noted that the varying the patient can choose based on whatever
definitions across the literature made it considerations seem relevant.
difficult to say much about its impact.27

Shared decision-making is much more,
This has implications beyond the analytical.
explains Alan Balch, CEO of the US National
Axel Mühlbacher, professor of health
Patient Advocate Foundation. “It should start
economics and healthcare management
with a conversation about what matters to
at the Institut Gesundheitsökonomie und
you as a person. What are your goals? What is
Medizinmanagement (Health Economics and
your work and social environment like? What
Healthcare Management Institute) in Germany
elements of quality of life are important to
notes that shared decision-making is lacking
you?” The doctor, like a good service provider in
“a single, systematic approach toward how
other sectors, should then indicate what sorts
communication about patients’ preferences
of treatments might best meet that individual
between doctors and patients should be
patient’s needs, bounded by treatment
organised.” 26. N Moumjid et al, “Shared decision making
guidelines and incorporating cost of care into
in the medical encounter: are we all
Discussions of the concept therefore inevitably the discussion. talking about the same thing?” Medical
Decision Making, 2007.
need to fall back on the technique of calling
Rather than an asymmetry of knowledge
something a duck if it walks and quacks like 27. L Shay and J Lafata, “Where is the
giving power to one side in the conversation,
evidence? A systematic review of shared
one. What, then, are this bird’s attributes?
both bring something to the discussion, adds decision making and patient outcomes,”
Mr Balch. “The patient is the expert on what Medical Decision Making, 2015.
At a minimum, as one study28 put it, three
elements are essential: is important to them. The healthcare provider 28. France Légaré and Holly Witteman,
should have expertise around the medical “Shared Decision Making: Examining Key
 recognising and acknowledging that a Elements And Barriers To Adoption Into
science and how it could be used. Combining
Routine Clinical Practice,” Health Affairs,
2013.

those two sets of information together to with patient decision aids widely available in
determine the right care plan for that patient at just four study countries (Germany, Spain,
the current time is where co-creation happens. the UK and the US) and seeing substantial
You can have a back and forth.” development in one (France).
For such discussions to be meaningful, notes Finally, shared decision-making should not
James Morrow, a general practitioner (GP) in become as much a barrier to patient autonomy
England’s NHS, it often requires more than new as its absence. Yukiko Nishimura, president and
types of conversations between patient and founder of the Advocacy Service for Rare and
clinician. Broad systemic change may also be Intractable Diseases’ multi-Stakeholders in
necessary so that “patients are able to express Japan, explains that some patients genuinely
themselves in a way that they are respected: feel more comfortable with doctor-directed
making patients wait a long time in a waiting care, with attitudes frequently differing by
room is disempowering; making them take age, disease or even family environment. Dr
snap decisions is disempowering; making Morrow agrees that, whether patients want
them take decisions while lying on their backs extensive facts before picking an option,
can be disempowering. Respecting their time, “varies by individual and by condition. It is a
dignity and right to go away and think should valid choice to make a conscious decision to go
be viewed as part of good care.” with what a clinician thinks best. Forcing those
patients into a multiple choice about what they
Shared decision-making also has important
want fails to respect their desire for an adviser.”
limitations. To begin with, whoever makes the
decision may still have a very limited number Although we did not address this topic
of choices: medicine may provide patients with directly in our survey, it is perhaps relevant
certain conditions only one viable option, or here that, with respect to shared decision-
even none. making, respondents were more likely to put
an emphasis on the importance of having
Next, to understand potential available
accurate information on side-effects, and on
therapies fully, patients may need extensive
family members and carers being able to take
assistance. As Isabella Erb-Herrmann
part in discussions, than on the existence of
—Bevollmächtigte des Vorstandes
a list of options from which a patient could
(representative of the management board) at
choose.
German insurer AOK Hessen—explains, “if we
are talking about patients coming to make and But does shared decision-making work?
discuss proposals, they need to be informed to It is a matter of what is being measured. A
a high-quality level of health literacy.” 2015 review found very few relevant studies
available. Although only 4% of these showed
Accordingly, AOK Hessen offers substantial
any negative results from shared decision-
information resources for patients. Here,
making, too little evidence existed to claim
though, the scorecard indicates the need
with certainty that it led to better clinical
for further progress across study countries,

outcomes. On the other hand, a link between decision. Research that looked at results where
shared decision-making and higher levels of only clinicians identified whether shared
patient satisfaction and understanding did decision-making had taken place showed no
come through. These are not lesser cousins improvement over the norm. In other words,
to traditional clinical results. As one advisory patients genuinely have to feel part of the
board member put it, “clinical outcomes are process for it to be helpful. “The challenge
important, but personal goals and aspirations with these findings,” the study concluded, “is
matter too.” that we do not know what leads a patient to
report a decision as shared, and thus do not
Notably, in the 2015 review shared decision-
know how to foster shared decision-making
making’s benefits occurred only when the
and its associated benefits in practice.”29 They
patients believed that they had shared in the
probably need to ask the experts: patients.
29. L Shay and J Lafata, “Where is the

evidence? A systematic review of shared
decision making and patient outcomes,”
Medical Decision Making, 2015.

CHAPTER 4:
HEALTH SYSTEMS THAT STILL NEED

WORK
Doing old jobs better
The relatively modest application of policy levers in pursuit of patient-centricity, in turn, helps explain
the slow evolution of health systems toward supporting this kind of care.
Most countries in this study have some of the best healthcare access in the world, with eight (except
China) finishing in the top 11 out of 60 countries in The Economist Intelligence Unit’s Global Access
to Healthcare Index.30 Weaknesses around patient-centricity should not obscure the importance of
such ability to receive treatment. Ms Nishimura, for example, stresses the benefits of “Japan’s highly
equitable medical system”.
Moreover, all the study countries have mechanisms to introduce innovative technologies into their care
systems, such as through Health Technology Assessment agencies, with the UK’s National Institute for
Health and Care Excellence an acknowledged global leader. Our scorecard research also found that in
every country, except Brazil and China, getting access to and making appointments with one’s usual
physician was straightforward.
Meanwhile, IT is, if anything, making access to, and use of, health services easier. For example, online
30. Global Access to Healthcare: Building appointment-making or interaction with clinicians are now far from remarkable. For some patients,
sustainable health systems, 2017.
even going to see GPs in person may soon be a thing of the past. In 2017 the NHS began trialling
31. “NHS offers smartphone GP smartphone consultations in London and, in 2018, both the Japanese and French health systems have
appointments,” BBC News, November
introduced payments for clinicians who interact in this way.31
6th 2017; “Telemedicine via smartphone
apps gaining in popularity in Japan,”
Japan Times, September 18th 2018;
Access to records: a (small) step in the right direction
French Ministry of Health, Arrêté...
portant approbation de l’avenant no 6 The scorecard also shows at least one sign of a noticeable shift toward a more patient-centred
à la convention nationale organisant les
approach. Every country except Brazil and China gives patients the right to access their healthcare
rapports entre les médecins libéraux et
l’assurance maladie signée le 25 août 2016, records (see Table 6). This is a significant cultural change, and a necessary one if patients are to play a
August 1st 2018. truly equal role in decision-making.
Table 6: Patients’ right to access their own health record

Patient involvement Patients right to access their 0 0 1 1 1 1 1 1 1
in shared decision- own healthcare records
making
0 = No/Not reported; 1 = Patients have the right to access their own health record.

However, the extent and importance of patient access should not be overestimated. To begin with, a
gulf exists between a legal right to access on request and easy availability of one’s own medical records
online.
In Japan, Ms Nishimura explains, the law requires the disclosure of records on application but so far
patients are rarely interested save in exceptional circumstances, such as preparing a malpractice
lawsuit. Moreover, in practice, the barriers are high: “There is a high disclosure cost, there is a need to
visit the clinic, the period for which providers are obliged to provide medical records is short, and so
on.”
Japan is not alone in having practical impediments to access. In some Italian regions the roll-out of
electronic health records for use even within the health system remain so basic32 that there is not much
to share. In Germany, meanwhile, patient access depends on one’s insurer and the UK’s roll-out of
universal online patient access is not scheduled to finish until 2020.33 Even where access exists, the
technology itself is not always easy to use. French residents, for example, have a single login for their
data, but those in the US may need to login separately with all their different healthcare providers.34
Moreover, evidence of benefit from being able to see these notes is also mixed. Some individual studies
have found improvements in areas such as patient understanding, self-care and communication with
clinicians, but most literature reviews over the past decade have found that evidence for such gains
overall were equivocal or insufficient to conclude anything with certainty.35
This is not necessarily a high priority for patients. In The Economist Intelligence Unit’s patient group
survey, the ability to review notes or lab results was considered a far less important requirement for
genuine shared decision-making than receiving information on current options and clinician openness
to discussion.
In general, then, true patient access to medical records is culturally significant because it represents
such a break with the ways of the past. However important in that sense, when it is actually in place it
will only be a small first step toward a system built around patient-centred care. 32. Lidia Di Minco, “Electronic Health
Record (EHR): Implementation in Italy,”
conference presentation, April 5th 2017.
Still not looking patient-centric
33. Boston Healthcare, “Digital health
The scorecard shows that countries are moving far more slowly in more substantial elements of care expands in Germany, providing new
integration and personalisation. This is a particularly striking finding given the relative strength of most opportunities for global medical device
and diagnostics innovators,” [2018]; “Give
of the included health systems compared with others across the globe. patients access to their medical records,”
BMJ, 2017.
Our research found little indication of clinicians taking a personalised approach to individual patients
34. Anna Essén et al, “Patient access to
in general, with only France and the US having doctor’s appointments 15 minutes long (this served as
electronic health records: Differences
a proxy indicator for countries’ approaches to patient care that took into account co-morbidities; see across ten countries,” Health Policy and
Table 7). Technology, 2018.
35. Elske Ammenwerth, “Adult patient access

to electronic health records,” Cochrane
Database of Systematic Reviews, 2017.

Table 7: Holistic approaches to patient care taking account of co-morbidities

Personalised care according Holistic approaches 0 0 2 0 0 0 1 0 2
to patients’ values and to patient care
preferences taking account of
co-morbidities
0 = Not reported/Duration of regular visit less than 10 minutes; 1 = Duration of regular visit 10-14 minutes; 2 = Duration of regular visit ≥ 15 minutes.
This may seem a small point, but the implications are large. Ms Sofia notes that, in her experience,
one common issue for all patient groups whatever the disease community they represent is “the very
little time and little listening that they get from doctors and researchers. This is a major concern. I’m
not blaming doctors, because it is often a structural problem inside the health system.” In the five to
ten minutes available in many countries, it is simply too difficult to address many complex situations. It
also makes it harder to pick up signs of unusual conditions. Ms Nishimura notes that the average time
it takes even to diagnose a rare disease is around five to seven years.
As for integrated pathways, only the UK had guidelines recommending co-ordinated multi-disciplinary
team care for all of HIV/AIDS, epilepsy, psoriasis, osteoporosis and mental illness (see Table 8). Similarly,
despite progress in specific areas, we found that navigation across various treatment providers for
complex conditions remains a challenge across all the scorecard countries.
Table 8: Existence of national clinical practice guidelines recommending co-ordinated and integrated patient care
with multidisiplinary teams (selected conditions)
Continuity of care Existence of national clinical 0 0 0 0 0 0 0 1 0
practice guidelines recommending
co-ordinated and integrated
patient care with multidisiplinary
teams (selected conditions)
0 = No national clinical practice guidelines recommending co-ordinated and integrated care with multidisciplinary teams for ≥3 of 5 selected conditions;
1 = Existence of national clinical practice guidelines recommending co-ordinated and integrated care with multidisciplinary teams for at least 3 out of 5 selected conditions.
In short, integration around the person being treated—a necessary condition for truly patient-centred
care—is still at a very early stage. Dr McClellan explains, “we are going through a lot of growing pains.
A lot of organisations have been trying but we are not getting it right the first time. Most don’t have
the competencies and capabilities to succeed with these new models. They need to figure out how to
make orderly change. We are on a journey with some clear bright spots but still a really long way to go.
It is a global problem.”
36. Kiyoyuki Tomita, “Japanese Healthcare The general difficulties in co-ordinating and integrating care are similar to the inherent barriers of
at a Crossroads (1): Toward Integrated change in healthcare discussed earlier. Moreover, the particular challenges can vary by country: in Japan,
Community Care,” Tokyo Foundation for
Policy Research web page, 2017. for example, the government is hoping that increasing the role of GPs will help provide more coherent
individual treatment;36 while in the UK, where GPs have long been system gatekeepers, the issue is more
37. Ben Collins, “Adoption and spread of
innovation in the NHS,” King’s Fund Paper,
likely to be low spending on system innovation.37 As Mr Graham puts it, “systems need to do this in [their]
2018. own context. What might work in the English NHS might not work in Germany, for example.”
What every health system should understand is that the evolution will not end with the creation of
integrated care and multi-disciplinary teams of clinicians wherever appropriate.
William McColl is vice-president for policy and advocacy at AIDS United, an American patient
advocacy group. He explains that the experience of the Ryan White programme in the US, which
provides comprehensive care for people living with HIV who lack insurance, made clear that, even if
efforts are focused on one condition, other issues quickly become apparent.
“Food and nutrition, for example, are for many people a fundamental part of treatment but are
not considered a medical intervention. It’s true for people living with HIV but also true for others.
Somebody with kidney disease not getting the food they require will have poorer health outcomes.”
The implication of a focus on the patient has also helped Humana—a large US insurer with over 20m
members that also runs clinics serving 260,000 people—to learn that valuable interventions to improve
health go far beyond those traditionally found in medicine (see Box).
BOX: HUMANA: LOOKING AT THE

WIDER BOUNDARIES OF PATIENT-
CENTRED CARE
When health systems focus on preferred Humana demonstrates the range that such
outcomes for individuals, rather than the activities can take.
volume of medical activity, the range of relevant
Dr Beveridge says that the company identified
interventions grows rather than contracts. A
barriers to care through discussions with
recent survey of both private and public US
thousands of its members to find out their
health providers found that 81% are in some
preferences and needs. This research showed
way integrating into their activities matters
that “transportation for people with low
related to the social determinants of health.38
salaries is a huge issue. It is not that they are
Roy Beveridge, chief medical officer of not coming back to doctor because they don’t
Humana, explains that this is not simply a nice- want to. They can’t afford to take a cab.” In
to-have. “We have to take care of the patient response, the company’s Florida operations
holistically,” he says, “because, if we don’t, we have integrated into every Medicare insurance
are not going to fix the disease. Perhaps the policy free or assisted transportation to its
patient is unable to fully participate in their clinics. The uptake has been substantial.
care because they couldn’t get to see you, or
Dr Beveridge reports that “the last time I was
their blood sugar levels may not be doing well
in Miami, Humana seemed to be the biggest
because they eat canned, sugary food since
bus service in Florida. It was probably not, but
that’s all they can afford. We need to think
a lot of people were using it.” The integration
about the patient more broadly.” 38. Change Healthcare, The 8th Annual
Industry Pulse Report, 2018.

of different specialties and dispensing Humana and its partners are currently
pharmacies at some of Humana’s partner conducting a longer randomised trial to
clinics further improves the access to care from determine if there are differences in hospital
a single bus ride. admission rates and costs per member per
month between those connected up with food
Another issue that members frequently raise
banks and a control group who are not helped
with Humana is food insecurity, a state that
to make such links.
correlates with markedly higher probabilities
of having certain chronic conditions, such as This study is part of a bigger strategy. Humana’s
diabetes and heart disease. 39
In partnership “Bold Goal” initiative is working with physician
with local food banks and Continucare, practices, non-government organisations, and
a partner clinic chain, in 2016 the insurer academic, business and community leaders
conducted a four-week pilot study in south across 11 US cities to find scalable, evidence-
Florida of a possible intervention. based interventions to address various social
determinants of health, including not just food
Regardless of insurance carrier, patients who
insecurity but loneliness and social isolation.
came to one of three designated clinics were
screened for food insecurity. Of the roughly This is not corporate social responsibility under
1,500 people screened, the 46% who tested another name, but healthcare understood
positive then were offered a referral to meet broadly. Humana, says Dr Beveridge, is
a representative of the food bank who was studying various options with different costs
on-site, to which 86% agreed. Nearly all also to see what is effective for a given population.
accepted an emergency food box from that It will make decisions on which interventions
representative. Finally, as part of the project, to scale up, based on those results. “We owe it
social workers worked with those identified to each member to have a good idea what is
to help make sure that the latter were getting important to them,” he says, including while
their entitlement of US government Food they are still healthy. Doing so, he says, “will
Stamps. 40
keep them alive longer and we will spend less
money. That seems like a pretty good thing.”
As a result of the pilot, says Dr Beveridge,
39. Dominic Decker and Mary Flynn,

“Food Insecurity and Chronic Disease:
Addressing Food Access as a Healthcare
Issue,” Rhode Island Medical Journal, 2018.
40. Humana, Health Happens Where You

Are: 2018 Bold Goal Progress Report, 2018;
“Humana’s CMO Speaks of the ‘Bold Goal’
Embedded in the Company’s Population
Health Work,” Healthcare Informatics,
September 14th 2018.

CHAPTER 5:
METRICS AND DATA GATHERING

URGENTLY NEEDED
No date for the PROMs
The truism that you get what you measure for is as accurate in healthcare as elsewhere. A crucial early
step towards patient-centred care, Mr Graham of the Picker Institute observes, is trying to capture
people’s experiences in order to create a baseline of the existing situation and a rationale for change.
Without “good systematic measures, you rarely get critical improvement”.
Patient groups agree. In our survey, a majority of respondents cited a focus on outcomes that matter as
a leading element of patient-centred care, well ahead of even patient experience and shared decision-
making.
In our scorecard, however, indicators related to measurements of different aspects of patient-

centricity have some of the worst results across countries. For example, we found evidence of health
systems using patient empowerment assessment tools only in the UK and US (see Table 9), while
Germany joined these two as the sole countries that had clearly deployed at least some metrics around
the quality of shared decision-making support (see Table 3).
Table 9: Use of patient empowerment assessment tools by healthcare providers

Patient Use of patient 0 0 0 0 0 0 0 1 1
empowerment empowerment assessment
tools by healthcare
providers
0 = No/Not reported; 1 = Use of patient empowerment assessment tools by health providers.
The most striking result concerns PROMs, especially given the attention that these metrics have
received in recent years. PROMs are tools—typically validated, standardised questionnaires—through
which patients give their assessment of any number of treatment results, from relief or not of given
physical and mental symptoms, through the individual’s functional status, to health-related quality of
life. The questionnaires can be either general or condition-specific and normally are repeated before
and after (sometime more than once) an intervention to give an idea of its impact.41 41 For further detail, see Charlotte Kingsley
and Sanjiv Patel, “Patient-reported
In short, PROMs transform the definition of a treatment’s success from whether it changed measurable outcome measures and patient-reported
experience measures,” BJA Education, 2017
biomedical outcomes chosen by the health system to if, and how much, it made the patient feel better. and Theresa Weldring and Sheree Smith,
This makes them fundamental to patient-centred care. “Patient-Reported Outcomes (PROs) and
Patient-Reported Outcome Measures
(PROMs),” Health Services Insights, 2013.

Table 10: Use of patient-reported outcome measures (PROMs) in routine care

Use of PROMs Use of PROMs in routine care 0 0 0 0 0 0 0 1 0
Patient validation of PROMs 0 0 0 0 0 0 0 0 0
Use of PROMs in routine care: 0 = No/Not reported; 1 = Use of PROMs in routine care. Patient validation of PROMs: 0 = No/Not reported; 1 = Patient validation of PROMs.
Of our scorecard countries, though, just the UK seemed to use PROMs in clinical settings and no
country in the scorecard undertook patient validation of those PROMs (see Table 10). Worse still, this
single positive result requires important caveats. The UK has scaled back the number of conditions
for which it collects PROMs to now cover only knee and hip replacements.42 This may be precisely the
wrong intervention through which to make PROMs more common across the health service. Unlike
much care in the UK, private providers carry out a large share of joint replacements, with a share of
38% in 2017, although these are sometimes NHS funded.43 Worse still, a 2017 survey found that only a
minority of clinicians who receive PROM data actually use it.44
One problem with PROMs remains their relative novelty. Mr Balch of the National Patient Advocate
Foundation in the US observes that “there are still not a lot of truly meaningful patient reported
outcomes measures that reflect what we know about personalised medicine and those that are used
42 NHS Digital, “Patient Reported Outcome commonly now are not nuanced enough to capture preferences and experiences driven by key factors
Measures (PROMs),” website accessed such as type of disease, stage of disease, age, racial/ethnic values, and logistical burdens.” While useful
October 19th 2018.
in research on system-wide performance, for example, doctors and nurses are often unsure how
43 National Joint Registry, “NJR StatsOnline,” best to use them in interactions with individual patients, or even what a “good” result might be in any
website accessed October 19th 2018.
given case.45
44 NHS England, National Patient Reported
Outcome Measures (PROMs) Programme They also simply cannot be inserted into everyday care without other systemic changes. Clinicians who
Consultation Report, 2017. would be disposed to use PROMs explain that they are reluctant to gather and apply the data involved
45 Birgit Prodinger and Paul Taylor, “Improving if it disrupts regular care. Further training, changes in workflow processes and payment for the time
quality of care through patient reported involved would need adjustment.46
outcome measures (PROMs),” BMC Health
Services Research, 2018.
Such practical matters can be overcome with effort, but PROMs as currently being devised also need,
46 Birgit Prodinger and Paul Taylor, “Improving perhaps ironically, to become more patient-centric if they are to achieve their potential. A 2017 study of
quality of care through patient reported PROMs developed in the US, UK and Germany found that in only 11% did patients have any—typically
outcome measures (PROMs),” BMC Health
Services Research, 2018; Anja Desomer a limited—involvement in selecting which outcomes to measure, and in 26% no patient consultation
et al, Use of patient-reported outcome took place on any aspect of the questionnaire.
and experience measures in patient care
and policy, 2018; Joanne Greenhalgh et al. Indeed, in just over only half of cases did the creators check if their PROM tool was comprehensible
“How do doctors refer to patient-reported
to patients.47 This is consistent with Mr Graham’s experience: “It is not unusual to see them designed
outcome measures (PROMS) in oncology
consultations?” Quality of Life Research, without patient participation, but that means patients reporting on what clinicians think is important.”
2013.
47 Bianca Wiering et al, “Patient involvement New kinds of metrics: PREMs and PCOMs slowly appearing
in the development of patient-reported
outcome measures: a scoping review,” Delays in fulfilment of the promise of PROMs suggest that the further evolution of healthcare
Health Expectations, 2017. measurement, an essential part of patient-centred care development, will take a long time. One such
metric is the Patient Reported Experience Measure (PREM), which goes beyond outcomes to examine
the healthcare user’s satisfaction with and general experience of care. Like PROMs, individual examples
are appearing: under French law, for example, all hospitals must take part in the e-Satis survey system,
which asks patients how satisfied they are with their experience, and results are made public. The
NHSs in each of UK’s constituent nations all conduct large satisfaction surveys that cover various
aspects of primary and specialist care. Overall, however, use of PREMs remains limited.48 Moreover,
where they exist, the data tend to be used at a system level rather than filtering down to clinicians.49
Other metrics of potential value for patient-centred care are also appearing. Recently, efforts to create
so-called Patient-Centred Outcomes Measures, which cover results solely defined by patients and
may go beyond the clinical, have begun.50 Dr McClellan illustrates what kind of information this could
include: “If you have cancer, then if what matters is whether you are making it to big family events, is
that actually happening? Are you able to live in the community if you want to? We are starting to see
that but there is a long way to go.” Looking ahead, he believes healthcare may even adopt metrics
from other sectors such as net promoter scores, which measure the willingness of product or service
users to recommend them to others. This has already begun in the English NHS, which since 2013 has
collected substantial data on whether patients would recommend a variety of services to their families
or friends.
For now in general, however, health systems still have to learn how to walk before they can run. The
adoption of PROMs and other metrics needs to move from aspiration to clinical reality. These metrics
can also play a key role in drug development (see Box).
BOX: PATIENT PREFERENCE

STUDIES AND DRUG
DEVELOPMENT: MOVING BEYOND
WINDOW DRESSING 48 Anja Desomer et al, Use of patient-reported
outcome and experience measures in
The focus of PROMs and PREMs are most making itself. Axel Mühlbacher, professor of patient care and policy, 2018.
relevant to healthcare providers and payers, health economics and healthcare management
49
Ronen Rozenblum et al, “The patient
not to mention patients. Other parts of the at the Institut Gesundheitsökonomie und satisfaction chasm: the gap between
health system are also trying to access patient Medizinmanagement (Health Economics hospital management and frontline
clinicians,” BMJ Quality Safety, 2013.
views, in particular those approving drugs and and Healthcare Management Institute) in
setting their prices. Germany, points out, however, that just 50
International Rare Diseases Research
Consortium, Patient-Centered Outcome
“having some patients sitting around the Measures Initiatives in the Field of Rare
Numerous regulatory and health technology
table is window dressing.” In his country, for Diseases. 2016; R Bryant-Waugh, “What
agencies have patient representatives with matters to me?: Development and use
example, patient advocates are present but
formalised roles in the approval process, of a person centred outcome measure
not able to vote, and they are not themselves (PCOM) for parents of children with
although not necessarily in the decision-
necessarily transparent about how they arrive feeding disorders,” Poster presentation,
BMJ Archives of Childhood Disease, 2017.

at the arguments they present as part of the collecting patient input,51 while the European
drug approval process. “There is no regular, Medicines Agency has engaged in pilot projects
systematic and transparent documentation on in collecting such data.
patient preferences,” he adds.
One issue is potential cost. Mr Mühlbacher
Accordingly, Mr Mühlbacher, says “a steadily explains that various methodologies for
growing stream of patient preference studies” patient preference studies are available, with
has appeared. These attempt to provide more different benefits and drawbacks, but that a
robust patient input on questions such as reasonable study would normally cost around
which unmet needs deserve priority in drug US$200,000-US$300,000, while one with the
development, the most appropriate things to best available techniques in several countries
measure in clinical trials, and how to balance would reach about half a million. Whether this
potential benefits and risks of new products. is expensive, though, is a matter of perspective.
Mr Mühlbacher believes it is a small price
The field, though, remains at a very early stage.
relative to the high cost of clinical trials in order
Mr Mühlbacher notes that currently the US
to get an accurate idea of whether patients
Food and Drug Administration is furthest
think a product is worth approving. “If we
ahead in the use of patient preference studies
pay 1% of the costs of clinical trials in order
as part of its efforts on patient-focused drug
to translate the clinical effects into value to
development, issuing draft guidelines on
patients, it doesn´t seem a lot to me.”
Data bubble: whose data gets to matter?

51 FDA, “Patient-Focused Drug Development:
Collecting Comprehensive and
People can now get a range of monitors for condition-specific symptoms, such as blood glucose levels
Representative Input Guidance for Industry,
Food and Drug Administration Staff, and to more general tools, such as blood pressure meters. A personal electrocardiogram machine is easy to
Other Stakeholders DRAFT GUIDANCE,” acquire and home DNA testing (for both health and ancestry) is increasingly common. Fitness trackers
June 2018.
are also ubiquitous. Their integration into smart watches and other mobile devices, though, means
52 IDC, “Global Wearables Market Grows 7.7% that most of the 115m wearables sold globally in 2017 alone52 can generate data on exercise levels, sleep
in 4Q17 and 10.3% in 2017 as Apple Seizes
the Leader Position,” press release, March
patterns and other aspects of health.
1st 2018.
Mr Graham points out that “people have access to a fantastic richness of data, way beyond the details
53 Deborah J Cohen et al, “Integrating Patient- of what professionals would have wanted.” The potential benefits of using patient-generated health
Generated Health Data Into Clinical Care
Settings or Clinical Decision-Making,” data (PGHD) in healthcare are substantial. Some doctors who have done so report deeper insight into
JMIR Human Factors, 2016; US Office patients’ medical conditions, more accurate information and improved understanding of how patients
of the National Coordinator for Health
lived between clinical visits, allowing better care plans.53
Information Technology, Conceptualizing
a Data Infrastructure for the Capture, Use,
On the other hand, PGHD presents challenges. With so many equipment and software producers, for
and Sharing of Patient-Generated Health
Data in Care Delivery and Research through example, data quality can be uncertain. The way in which information is presented may not adhere to
2024, 2018; AM Lai et al, “Present and Future standard clinical formats. The data are also sometimes incomplete, and patients may abandon devices
Trends in Consumer Health Informatics
and Patient-Generated Health Data,” IMIA
or regimens. Moreover, given the wide range of data falling under PGHD and its relatively recent
Yearbook of Medical Informatics, 2017. appearance as a major source of information, widespread evidence of its utility remains scant. Finally,

the integration of PGHD into health records brings issues of ownership, privacy and even legal liability,
if too much or too little reliance is placed on the information.54
Nevertheless, some clinicians are starting to tap into PGHD. At Dr Morrow’s practice, “we welcome
access to validated patient-generated, patient-owned data”, especially as at-home monitoring by
modern electronic devices can be more accurate than one-off clinical tests.
Nevertheless, he explains that substantial judgement and discernment remain necessary when using
PGHD. A major problem is that those producing these home tools ranges from “highly reputable
providers to charlatans and quacks”. The latter often provide information based on inherent claims
that do not stand up to medical scrutiny. In such cases, “if patients bring this into a medical context,
there is a clash of cultures between that and evidence-based medicine. That is where patient trust in
the physician is important: to what extent do you challenge their beliefs, or is seeming to accept the
data a tacit acquiescence, in which case one becomes complicit?”
For example, Dr Morrow contrasts how he strongly supported a patient who purchased a personalised
genomic profile of a tumour as a way to see which drugs were likely to work against it. On the other
hand, he would find “far less helpful” a patient who might come in with a hair analysis allegedly saying
he had a shortage of trace elements in his body. Unfortunately, both patients may be just as likely to
think they are bringing relevant and important data to the discussion. In practice, then, PGHD not
only enhances patient-centred care by providing more opportunities for informed patient-clinician
dialogue, it can make such discussions all the more necessary.
54
Peter West et al. “Information Quality
The substantial potential benefits, though, make engaging with PGHD worth the effort of overcoming Challenges of Patient-Generated Data in
the inherent challenges. Indeed, notes Ms Perfetto, “we might be moving to a day where the clinician Clinical Practice,” Frontiers in Public Health,
2017; Peter West et al. “Common Barriers
will not have much choice. We will likely reach a point where data capture is automatic.” The English
to the Use of Patient-Generated Data
NHS is trying to get ahead of the curve, encouraging the private sector to develop apps through Across Clinical Settings,” Proceedings of the
which patients with chronic conditions can produce data that will eventually integrate seamlessly into 2018 CHI Conference on Human Factors in
Computing Systems, Paper No. 484, 2018;
electronic health records.55 AM Lai et al, “Present and Future Trends in
Consumer Health Informatics and Patient-
For now, however, health systems face problems that are all too common in the search for patient- Generated Health Data,” IMIA Yearbook
centred care. A recent study from the US Office of the National Co-ordinator for Health Information of Medical Informatics, 2017; US Office
of the National Coordinator for Health
Technology notes that: “Many health care systems, clinical practices of varying sizes and research
Information Technology, Conceptualizing
institutions lack the technical infrastructure, functional workflows, workforce capacity and training to a Data Infrastructure for the Capture,
support PGHD intake.” Not only do they struggle to derive insight from the data available “they worry Use, and Sharing of Patient-Generated
Health Data in Care Delivery and Research
that receiving PGHD from patients may add to their workloads and disrupt their workflows.”56 As with
through 2024, 2018.
so much in patient-centred healthcare, taking advantage of PGHD will require a wider rethink of how
55 “Linking patient health data is a huge
health systems work and reward activity.
opportunity for the UK,” EIU Perspectives,
June 29th 2018.
56 C
onceptualizing a Data Infrastructure for
the Capture, Use, and Sharing of Patient-
Generated Health Data in Care Delivery
and Research through 2024, 2018.

CHAPTER 6:
LESSONS FROM CHINA:

PATIENT-CENTRED WITHOUT A
PATIENT VOICE?
Effort is necessary
In most cases, explanations for national scorecard results are simple to find. The UK may only be part
of the way to patient-centred care, but it does well relative to others in large part because it has been at
it longer. The first NHS patient charter appeared in 1991, and patient-centricity has been a formal policy
goal since 1997.57 Starting with a primary care-based health system going back decades also certainly
did not hurt.
Conversely, Japan’s relatively low scores reflects, in large part, its lack of interest in patient-centricity
until more recently. Its physician-dominated, hospital-focused care has supported great longevity but
this success made it resistant to change, with major reforms attempting to integrate care around the
patient only within this decade.58 In fact, general practice became a recognised board discipline only
in 2017.59
How effective Japan will be remains an open question. Indeed, a much-heralded report of young
health-sector leaders commissioned by the health ministry, The Japan Vision: Health Care 2035, said
much that was laudable about changing toward a more value-based system with greater patient
autonomy and shared decision-making. Equally noteworthy, though, is that none of the experts
selected for the panel were patient representatives.60 Nevertheless, Ms Nishimura is hopeful: “the
practice of everyone participating in treatment is spreading, even in Japan,” especially among younger
57
Ruth Thorlby and Jo Maybin, A high-
performing NHS? A review of progress 1997- clinicians.
2010, 2010.
58 Kenji Shibuya et al eds, Japan Health System But not all effort succeeds
Review, 2018; Economist Intelligence Unit,
The shifting landscape of healthcare in The most instructive national results, however, are from China.
Asia-Pacific, 2015; OECD, OECD Reviews of
Health Care Quality: Japan, 2014.
The country is a consistently weak performer, gaining full marks on none of the 11 indicators and on just
59
Makoto Kaneko, “Current trends in four of the 26 sub-indicators. Often in benchmarking studies containing countries at different stages
Japanese health care: establishing a system
of development, those with emerging markets do worse than richer ones because of fewer available
for board-certificated Gps,” British Journal
of General Practice, 2017. resources. In this case, however, the explanation is far more complex.
60
Report available at: https://www.y- To begin with, money for change is not necessarily an issue. China has been engaged in widespread
s h i o z a k i . o r. j p /c o n t r i b u t i o n / p d f /
health system reform since 2009, backed by extensive state investment. Total annual government
20151221132002_77dW.pdf
and compulsory scheme healthcare spending more than tripled between that year and 2015, reaching
61 W
HO Global Health Expenditure Database,
US$338bn.61 This growth was roughly 1.5 times that of GDP during the same period. Among the leading
accessed October 27th 2018.

goals of this reform has been to move the country from a fragmented, hospital-focused healthcare
system with low levels of access to a multi-tiered one based around primary care providing the bulk
of treatment.62
Patient-centricity has an even longer history in Chinese policy. Since as early as 1997 it has been a major
goal of health policy.63 Gordon Liu—professor of economics at Peking University National School of
Development, who has advised state officials on aspects of health reform—explains that “when the
healthcare system is being discussed in China, policymakers always talk about how to better serve
patient demands for better access to better quality of care including facilities, devices, prescriptions
and shorter waiting times.”
Healthcare reform efforts have secured some important accomplishments. In 2002, for example, only
10% of the population had access to even basic health insurance, but now that figure is over 95%.64 In
addition, substantial investment has gone into creating primary care infrastructure. The number of
community health centres in the country, urban primary care facilities, rose from 24,260 in 2008 to
34,238 in 2014.65 More striking, between 2008 and 2015 annual government subsidies to primary care
institutions overall rose more than sevenfold to US$20.3bn.66
Despite such improvements, though, the country is far from having patient-centred, or even integrated
care provision. A joint study by the World Bank, WHO and various Chinese government ministries 62
Zhu Chen, “Launch of the health-care
recently called the country’s health system “hospital-centric, fragmented and volume driven. Service reform plan in China,” Lancet, 2009.
delivery has a strong bias toward doing more treatment than improving population health outcomes
63 Jingqing Yang, “The side-effects of China’s
and serving more people at hospitals rather than at grassroots levels.” 67 patient-centred healthcare reform,” Social
Policy Association [UK] conference paper,
As for patients themselves, the report said that “a much-needed comprehensive, system-wide 2010; Central Committee of the Communist
Party of China, 关于卫生改革与发展
approach to engage citizens in health, with well-defined roles for patients and providers, is still missing.
的决定 [Decision on health reform and
China’s health system needs to become more patient-centred. Concerns about quality of care and development], January 15th 1997.
providers not acting in the patient’s interest have eroded citizen trust in the system.” 68
64 Gordon Liu et al, “China’s Health Reform
Update,” Annual Review of Public Health,
2017.
A muffled patient voice
Many reasons help explain the failure of policy since 1997, and the 2009 reforms in particular, to create 65
National Bureau of Statistics China,
“Health Care Institutions,” Table 22-1, China
the aimed-for integrated health system. One is of particular relevance to this report. Statistical Yearbook 2015, 2015.
The patients themselves remain noticeably absent from efforts to shape transformation. Patient- 66 Xi Li et al, “The primary health-care system
in China,” Lancet, 2017.
centred care, for example, as understood in Chinese policy at least until 2010, has revolved around
ordering hospitals to provide better service rather than encouraging clinicians to co-create care with 67 D
eepening Health Reform In China:
patients.69 Building High-Quality And Value-Based
Service Delivery, 2016.
Attempts at change in recent years have been made with evident sympathy for patients: Mr Liu notes 68 Ibid.
that policymakers take note of media reports and academic research on patient difficulties with the
69 Jingqing Yang, “The side-effects of China’s
system, such as families suffering from catastrophic costs. Nevertheless, he explains that there is “a lack patient-centred healthcare reform,” Social
of formal platforms or transparent channels through which people can have their voices feed into the Policy Association [UK] conference paper,
2010.

policy process, or discussions on insurance or healthcare service delivery. China has a long way to go,”
in that respect.
This lack of formal communication helps explain some shortfalls of the 2009 reforms. One is the lack
of reorientation in practice toward primary care. Mr Liu notes that national statistics from 2010 to
2017 show that the number of people using community health facilities stayed largely flat or rose only
slightly over those years but show “a significant increase in the number of visits to tertiary hospitals
in that time. In other words, the situation where people go to hospital for outpatient care has not
improved. It has worsened.”
70 Gordon Liu et al, “China’s Health Reform The explanation is twofold. First, increased insurance coverage has allowed more use of secondary
Update,” Annual Review of Public Health, and tertiary care rather than needing to rely on local facilities. More important, patients are convinced
2017.
that the quality of care available in primary institutions is far inferior to that in hospitals, especially
71
Huixuan Zhou et al, “The development major ones in large cities.70 Accordingly, China’s tertiary hospitals, which make up 8% of healthcare
of indicator measure for monitoring the
quality of patient-centered care in China’s
institutions, account for 48% of outpatient activity.71 They are swamped, unable to keep up with
tertiary hospitals,” PLoS One, 2018. demand, with patients waiting from 2.5 to 8 hours in order to have a 15-minute consultation.72
72 Gordon Liu et al, “China’s Health Reform By some measures, patients have a point about primary care: roughly half of those practising as
Update,” Annual Review of Public
Health, 2017; Huixuan Zhou et al, “The GPs in grassroots clinics lack even a bachelor’s degree; only 64% of clinics are equipped to do basic
development of indicator measure for gynaecological examinations; and misdiagnosis is common.73 However, extremely brief occasional
monitoring the quality of patient-centered
outpatient appointments with overworked but better trained clinicians do not necessarily lead to
care in China’s tertiary hospitals,” PLoS One,
2018. better outcomes. A study of patients with hypertension and diabetes found that diagnosis and control
rates were poor across the board and only very slightly better among those who got care exclusively at
73
William Wong et al, “Primary care
workforce and continuous medical hospitals compared with those using primary clinics.74
education in China,” BMJ Open, 2017;
William Wong et al, “Availability and Getting people to use primary facilities may require better clinicians, but communication with patients
use of primary care facilities in China: a will also be necessary so that health planners can understand what would make them more attractive.
nationwide representative survey,” Lancet
(poster abstract), 2016.
Such interaction will also be needed to solve another major issue bedevilling Chinese healthcare.
74 Xi Li et al, “The primary health-care system Patient lack of faith in primary clinicians is part of a wider mistrust of all medical personnel. One recent
in China,” Lancet, 2017. two-year ethnographic study found that almost all the patients and family members it interviewed
75
Cheris Chan, “Mistrust of physicians in distrusted physicians to some degree.75 Indeed, violence against doctors and nurses by unsatisfied
China: society, institution, and interaction patients—known as yi nao, or medical disturbance—has for some years been a major social problem.
as root causes,” Developing World Bioethics,
2017.
In a 2016-17 Chinese Medical Doctor Association survey, 66% of physicians reported experience of
physical or verbal abuse. Meanwhile, the Supreme People’s Procuratorate reported in early March 2018
76 “Chinese doctor stabbed to death after
row with patient’s husband,” South China
that since 2016 it had prosecuted 7,816 people for intentionally injuring medical staff or inciting crowds
Morning Post, March 15th 2018; “Beaten, at hospitals.76 Disgruntled patients can even hire specialised criminal gangs to intimidate clinicians to
stabbed and threatened: who’d want to get better care.77
be a doctor in China?” Inkstone, March
16th 2018; “China’s Health Care Crisis: Lines
The strained relations between patients and clinicians is not a result of poor levels of technical
Before Dawn, Violence and ‘No Trust,’” New
York Times, September 30th 2018. competence or clinical experience, says Mr Liu. He believes Chinese hospital doctors are not far behind
those in the West in these areas. Because of the volume of people who want their services, however,
77 Therese Hesketh et al, “Violence against
doctors in China,” BMJ, 2012. these clinicians have “very, very limited time for interaction. Chinese patients would value a better

environment where doctors can treat us with respect and have more time for us. That is probably
one of the biggest causes of dissatisfaction. The respect that they can give to the patients, the dignity
patients should receive, that is what we should do better to develop.” Ultimately, he adds, this will
require a greater shift in demand toward strengthened primary care.
Chinese policymakers are certainly aware of the tension between patients and clinicians. In fact, a
joint policy statement in July 2017 from China’s National Health Commission and the Ministry of Public
Security included, among ten steps to deal with medical violence, beefed up hospital security and
harsher penalties for attacks, but also for institutions to make services more patient-centred.78 More
generally, the National Health Commission’s latest action plan under the 2015 Healthcare Improvement
Initiative calls for numerous initiatives to create much more integrated, continuous care in hospitals. It
also includes goals of making it easier for patients to obtain treatment and for their experience to be
improved. Listed policies for the latter include hiring medical social workers to improve communication
between doctors and patients and bettering the care environment, including by providing waiting
patients with reading, catering and other emotional comfort services in public areas.79
Nevertheless, patient input into how things should change is still missing. Indeed, a National Health
Commission team developed a set of 56 indicators to measure the quality of patient-centred care in the
country’s leading tertiary hospitals. Although all these metrics encourage the institutions to take steps
that are likely to improve patient experience, none look at patient input into hospital policymaking.80
Mr Liu expects that this is unlikely to change soon. “I don’t think China has the conditions that would
allow social groups, including patient groups, to play an effective role to influence national policy and
I don’t think that is something the government would encourage at the moment.” That said, he could
foresee situations where policymakers considering specific questions, such as research priorities,
might integrate patient representatives into their discussions. “I hope patient voices can be heard in
more formal channels in future, but I can’t say how long it would take.”
78 国
家卫计委等三部门亮“组合拳”防控伤医
Without a greater patient role, however, the results of Chinese efforts to implement patient-centred,
医闹行为 The National Health and Family
integrated care will show the extent and limits of what can be done without actively partnering with Planning Commission and three other
patients. departments work together to prevent and
control violence against doctors], China
Central Television News, July 13th 2017; 官
方严惩涉医犯罪：行为异常患者由保卫
人员陪诊 [Officials severely punish drug-
related crimes: patients with abnormal
behavior are accompanied by security
personnel], People’s Daily, July 12th 2017.
79 ““进一步改善医疗服务行动计划（2018-
2020年” [Further Improvement of Medical
Services Action Plan (2018-2020)], 2018.
80
Huixuan Zhou et al, “The development
of indicator measure for monitoring the
quality of patient-centered care in China’s
tertiary hospitals,” PLoS One, 2018.

CHAPTER 7:
ENGAGING PATIENTS AND PATIENT

COMMUNITIES ONE AT A TIME
Some patients are more central than others
What patients are seeking from patient-centred care is far from monolithic. It varies by geography and
health system, says Mr Graham, with patients in wealthier countries more focused on active health
system involvement while those in less well-off states are often more interested in improving patient
safety. Similarly, in our survey, respondents from the UK weighted shared decision-making roughly
equally with outcomes that matter as the key elements of patient-centricity. In every other country,
respondents were much more likely to point to the outcomes as the leading issue.
Another interesting difference appeared—this time between those advocating around different
diseases—when we asked patient groups about what was most important for a patient-centred
experience.
For those working with people living with HIV/AIDS, the most important part of patient-centricity here
was a well-organised appointment and referral process. Those advocating around other diseases also
thought this highly relevant but added that equally important was having healthcare professionals who
are interested in what patients have to say.
Those with HIV/AIDS were much less likely to see the latter as an issue. The most likely explanation is
that the history of advocacy around HIV/AIDS means that they are much more used to being listened
to.
The ability of patients, and their representative groups, to make their voices heard certainly has a
profound effect on the extent to which health systems will treat those affected in a patient-centred
way.
A self-benchmarking survey of 1,016 groups from 84 countries conducted in 2018 by PatientView,

a consultancy that tracks patient group attitudes, found that 25% of such organisations believed
that they had an impact on health policy and a further 37% that they probably did so. However, the
differences by disease community were marked.
PatientView has found that groups advocating around some diseases, such as HIV/AIDS, have generally
been the most potent in pursuing a range of goals, while others, including neurological diseases, have
tended to rate themselves lower.81
As Mr Sehmi explains, at an extreme, organisations working on widespread chronic diseases have

typically invested heavily in patient advocacy. They are accordingly well resourced and represented.
81 B
enchmarking the Patient Movement, 2018. “The health system is aware of this and always looking over its shoulder with regard to these conditions

because of it,” he adds. “But for rare diseases, there are few people, little or no training is provided for
advocates, and the media are not as interested. The patient perspective is being ignored and health
systems are making the same mistakes that they made 30 or 40 years ago in services to major non-
communicable disease populations.”
Whether one is living with a condition able to command attention (and, with it, patient-centricity),
however, can be a matter of circumstance. One factor is existing societal attitudes. Dr Morrow
observes, for example, that “children’s diseases are much easier to get attention and resources for than
those of the elderly or mental health.”
Contrasting advocacy histories: AIDS and epilepsy

Just as important is the ability of those with a condition to coalesce in understanding and
communicating what they need. Here, the distinct experiences of those living with HIV/AIDS in the US
and with epilepsy in Italy are instructive.
Mr McColl of AIDS United explains that the circumstances around the appearance of HIV/AIDS in the
US helped galvanise efforts to make health systems listen to patient views.
However, it was frightening: “people were dying at the height of the epidemic, which meant that people
took it seriously. That in itself created a level of activism.” Moreover, that shared danger, the particular
concentration of the disease in the LGBT community, the experience of stigma attached at the time to
both the disease and that community, and even the clear biological marker that provided a definitive
diagnosis all meant that HIV/AIDS “became something of an identity-based condition in a way other
chronic ones have not. There was a basis for people to pull together and create conditions under which
they could identify and tell providers what they needed.”
It also gave them the cohesion to define their identity in a way that underlined their expectation to be
treated as equals. “It started with people-first language,” says Mr McColl, “rather than calling us ‘clients’,
‘patients’, or that grating word ‘victims.’”
This sense of community and self-respect helped foster a successful patient movement and has
kept it together as its needs have changed over the following decades, especially after the arrival of
antiretroviral drugs. Now, issues like providing comprehensive care for individuals treated under the
Ryan White programme, dealing more effectively with common co-morbidities, and even slowing
or stopping transmission through reducing the viral load of the disease to undetectable levels are all
important issues for those living with HIV/AIDS in the US. Mr McColl explains that during this evolution,
the sense of community has allowed “people to say, ‘we have these needs, and here’s how we could
make care more effective.”
By contrast, Ms Sofia, of the Federazione Italiana Epilessie, explains that epilepsy advocacy even now is
typically carried out by doctors rather than those affected by the disease or their families. The clinician-
patient relationship, she adds, “is still very paternalistic”. The contrast between AIDS and epilepsy

groups is striking in this regard: for the former in our patient survey, almost all said that patients are
involved in the creation of care plans and in making decisions throughout the care process; for the
latter, almost none did.
Indeed, in some ways medical experts remain opposed to greater patient involvement. Ms Sofia recalls
that when she began in advocacy several years ago the doctor then treating her daughter, who has
epilepsy, “was very disappointed and kind of angry because I was interested in subjects such as epilepsy
research. He thought I should only help people by promoting family support initiatives.”
For Ms Sofia, however, the challenge is not simply changing clinician attitudes but encouraging patient
engagement. She sees the need to create the kind of community of interest that helped so much with
HIV/AIDS advocacy. Key barriers, she explains, are stigma and lack of progress. About half of those with
epilepsy, she estimates, are well controlled with current medication. In her experience, “those people
do not want to talk about their disease.” Those who are not well controlled, however, feel abandoned
and the lack of any real medical advance in the field in recent decades leaves them with “a feeling of
surrender”.
She is optimistic for the long term but does not see in Europe currently a substantial epilepsy advocacy
community. The most important shift to bring this about “must happen at the level of the patients
themselves. They need to become more engaged, more willing to be involved. This means becoming
able to recognise and promote their perspectives.”
The problem is far from unique to epilepsy. Of infectious diseases, tuberculosis is responsible for most
deaths in the world currently. The activist community for it, however, suffers from a tendency of those
infected, once cured, to be unwilling for people to know that they had ever had the disease because
of the stigma attached in many countries. Indeed, many of those involved in tuberculosis patient
advocacy previously worked for HIV/AIDS groups before deciding to focus on a different disease.82
In general, Mr McColl believes that the primary need for successful patient advocacy is for people
to embrace their identity as a person with those conditions, “to find folks who are willing to push as
a patient and bring others together.” For HIV/AIDS, the threat to life and overlapping identity with
the LGBT community eased the way, he adds, and with other conditions it might be more difficult.
Nevertheless, “passionate and organised voices” are the key to getting policymakers to respond.
Make passion less necessary

This has a couple of implications for patient-centricity. The first is that, without engaged patients, its
value will be inevitably be limited. The solution, though, is certainly not to force individuals to man
the barricades on behalf of their condition. Such zeal may have been the route to success for some
conditions like HIV/AIDS in the past, but that necessity reflects the failings of a paternalistic medical
systems rather than a desirable winnowing process to weed out diseases that deserve less attention.
82
Economist Intelligence Unit, Ancient
Instead, patients, families and health systems need to collectively move to a point where partnership
enemy, modern imperative: A time for
greater action against tuberculosis, 2014. for all conditions is the expectation rather than the exception. In such an environment, the necessary

engagement will be easier because patients will see that their views have an effect. This will allow
all patients, their communities, and representative groups to make clear what they really need and
contribute to making it happen. In most situations, this will involve clinicians actively encouraging
patients into partnership rather than having such a relationship foisted on them by advocates. In some
cases, it will also require taking the initiative to make the tools and processes discussed above, such as
decision aids and shared decision-making, far more widespread. Waiting for those affected by each
disease, in turn, to seize a seat at the table will delay change indefinitely.
The collective benefit, notes Ms Sofia, is a more profound understanding for all of what is needed in the
common endeavour to address illnesses. “Patients,” she says, “offer a perspective that is unique: what it
is like to live with the disease. Nobody else can bring it, even [the] most experienced doctor. I hope that
people living with epilepsy will take on the challenge and responsibility.”

CONCLUSION: VITAL
CONSIDERATIONS FOR
PATIENT-CENTRED CARE
Patient-centred care, with its emphasis on patient value, is a widespread health system goal. It is
not only more consistent with modern expectations than intervention-focused, provider-centric
care, it holds out the potential of better outcomes—both traditional clinical ones and those deemed
important by patients—at reduced cost. These hopes are evident in relevant policy declarations and
strategies across all nine countries assessed in this report.
However, despite some progress, especially in Europe and the US, in practice such care often remains
more aspiration than reality. Change has been largely in disconnected pockets rather than across
entire systems. The scorecard repeatedly shows weaknesses in many countries in indicators on which
it simply should not be that hard to excel.
Change will take action that goes beyond formal declarations. Given the diversity in health systems,
offering a simple checklist of reforms would make no sense. The study nevertheless does reveal
several general areas where policymakers in many countries should take particular note and consider
appropriate actions:
Health systems that have not done so need to make basic but fundamental policy changes.
Despite widespread backing for patient-centred care, it is difficult in practice to build a healthcare
system in which all stakeholders work together for the benefit of the patient (as well as their families
and carers). Support for shared decision-making, including the production of relevant decision aids,
should become the norm rather than the exception. Financing should reflect considerations of value
rather than volume. Education and training for healthcare professionals must include a greater
element of preparing them for the practice of patient-centred care. These may seem disparate issues,
but what they have in common is that they are fields over which policymakers have substantial
leverage—influence that has been exercised in too few scorecard countries to date.
Health system reform efforts need to move from improving existing activities to reshaping
fundamentally what they do. Many health systems in our scorecard are becoming more user-
friendly, such as allowing the use of online appointments through new technology. This should not
be confused, though, with patient-centred, value-based care. Integration and personalisation remain
a long way off, with workflows and payment systems all needing to adjust in order for existing goals
to become reality. Even where progress has taken place, such as through opening up medical records
to patients, health systems should not confuse formal legal rights to records with actual access to the
information.
Measure the right things for patients. The scorecard shows very little progress on measuring
processes and outcomes that promote patient-centricity. In particular, the lack of PROMs is surprising,

as is their all too frequent development without real patient input. PROMs, however, should only
be the beginning, with other relevant metrics needed to map the patient experience and the non-
clinical outcomes that may matter to patients. Even the creation of metrics will not be enough. Again,
workflows, payment schemes, and training will need to change for their full integration. Until all of this
happens, adequate measurement, and therefore patient-centred care as a whole, will remain in the
starting blocks.
It cannot be done without making patient engagement the norm. Efforts to improve patient-
centred care without patients’ input are likely to fall short. China’s experience over the past two
decades reflects what can happen when even well-funded, well-intentioned reform fails to understand
what patients really think and want. To some degree, this problem is far from unique to China. Too
often, some patients are more active in health systems than others, with patient-centricity the prize of
successful advocacy movements, while health systems can become less interested in those with other
diseases. Here, cultural change is essential. Patients need to step up, but for this to work well barriers
to doing so should fall. It is not about taking power away from the clinician and provider in order to
give it to patients. Partnership needs to become the default state of clinician-patient interaction if
patient-centred care is to become a reality. For this to occur it requires more than just cultural change
on the part of clinicians and patients; policymakers too need to listen and act in an appropriately
supportive manner.

While every effort has been taken to verify the
accuracy of this information, The Economist
Intelligence Unit Ltd. cannot accept any
responsibility or liability for reliance by any
person on this report or any of the information,
opinions or conclusions set out in this report.
The findings and views expressed in the report
do not necessarily reflect the views of the
sponsor.
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CREATING HEALTHY

© The Economist Intelligence Unit Limited 2019 1

ABOUT THIS REPORT

Advisory board members

 Jessica Beagley, policy research manager, NCD Alliance, UK

 Nicola Bedlington, secretary-general, European Patients Forum, Belgium

 Marc Boutin, CEO, National Health Council, US

2 © The Economist Intelligence Unit Limited 2019

 Karin Jay, senior director of international business development, Planetree, US

 Šarūnas Narbutas, president, Lithuanian Cancer Patient Coalition, Lithuania

 Alan Balch, CEO, National Patient Advocate Foundation, US

 Roy Beveridge, chief medical officer, Humana, US

 Isabella Erb-Herrmann, Bevollmächtigte des Vorstandes, AOK Hessen, Germany

 William McColl, vice-president for policy and advocacy, AIDS United, US

 James Morrow, general practitioner and CEO, Granta Medical Practices, UK

 Eleanor Perfetto, senior vice-president strategic initiatives, National Health Council, US

 Kawaldip Sehmi, CEO, International Alliance of Patients’ Organisations, UK

 Francesca Sofia, chief scientific officer, Federazione Italiana Epilessie, Italy

© The Economist Intelligence Unit Limited 2019 3

4 © The Economist Intelligence Unit Limited 2019

The project’s key findings include:

© The Economist Intelligence Unit Limited 2019 5

6 © The Economist Intelligence Unit Limited 2019

© The Economist Intelligence Unit Limited 2019 7

The rise of value-based healthcare

The most prominent of these are:

8 © The Economist Intelligence Unit Limited 2019

© The Economist Intelligence Unit Limited 2019 9

But whose value matters?

10 © The Economist Intelligence Unit Limited 2019

Patient-centred care: The optimal version of value-based healthcare

Such an approach has numerous advantages, notably including:

 reduced cost through eliminating duplication of tests and interventions.

© The Economist Intelligence Unit Limited 2019 11

 The first is a necessary pre-condition of any meaningful, integrated healthcare: access to an

12 © The Economist Intelligence Unit Limited 2019

Charting uneven progress

© The Economist Intelligence Unit Limited 2019 13

THE PATIENT-CENTRED CARE

The four domains are:

14 © The Economist Intelligence Unit Limited 2019

© The Economist Intelligence Unit Limited 2019 15

16 © The Economist Intelligence Unit Limited 2019

Table 2: Scorecard by alignment to patient-centred care

Domain Indicator Brazil China France Germany Italy Japan Spain UK US

© The Economist Intelligence Unit Limited 2019 17

 a dichotomy between policy aspiration and practice;

 a weakness in measurement and the kind of metrics being used.

These are discussed in turn in the following sections.

18 © The Economist Intelligence Unit Limited 2019

Table 3: Shared decision-making

© The Economist Intelligence Unit Limited 2019 19

Table 4: Value-based payments

21. Economist Intelligence Unit, Value-based

Table 5: Education and support for healthcare staff

20 © The Economist Intelligence Unit Limited 2019

© The Economist Intelligence Unit Limited 2019 21

23. Sara Kreindler, “The politics of patient-

22 © The Economist Intelligence Unit Limited 2019

BOX: A RADICAL DUCK: WHAT IS

or did so in an idiosyncratic way. Later, in

definitions across the literature made it considerations seem relevant.

difficult to say much about its impact.27

 reduced cost through eliminating duplication of tests and interventions.

 The first is a necessary pre-condition of any meaningful, integrated healthcare: access to an