CREATING HEALTHY PARTNERSHIPS · The results 15 Chapter 3: Patient-centricity: The gap between grand strategy and detailed policy 19 ... Creating healthy partnerships: The role of

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CREATING HEALTHY PARTNERSHIPS:THE ROLE OF PATIENT VALUE AND PATIENT-CENTRED CARE IN HEALTH SYSTEMS

1© The Economist Intelligence Unit Limited 2019

C R E AT I N G H E A LT H Y PA RT N E R S H I P S :T H E R O L E O F P A T I E N T V A L U E A N D P A T I E N T - C E N T R E D

C A R E I N H E A L T H S Y S T E M S

About this report 2Executive summary 4Chapter 1: Introduction: Refocusing medicine 7

Echoes of a long-established hierarchy 7The rise of value-based healthcare 8But whose value matters? 10Patient-centred care: The optimal version of value-based healthcare 11Charting uneven progress 13

Chapter 2: The Patient-Centred Care Scorecard 14Introducing the scorecard 14The results 15

Chapter 3: Patient-centricity: The gap between grand strategy and detailed policy 19Declarations aplenty but fewer detailed plans 19Barriers to change 21Box: A radical duck: What is shared decision-making? 23

Chapter 4: Health systems that still need work 26Doing old jobs better 26Access to records: a (small) step in the right direction 26Still not looking patient-centric 27Box: Humana: Looking at the wider boundaries of patient-centred care 29

Chapter 5: Metrics and data gathering urgently needed 31No date for the PROMs 31New kinds of metrics: PREMs and PCOMs slowly appearing 32Box: Patient preference studies and drug development: Moving beyond window dressing 33Data bubble: whose data gets to matter? 34

Chapter 6: Lessons from China: Patient-centred without a patient voice? 36Effort is necessary 36But not all effort succeeds 36A muffled patient voice 37

Chapter 7: Engaging patients and patient communities one at a time 40Some patients are more central than others 40Contrasting advocacy histories: AIDS and epilepsy 41Make passion less necessary 42

Conclusion: Vital considerations for patient-centred care 44

CONTENTS

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C R E AT I N G H E A LT H Y PA RT N E R S H I P S :T H E R O L E O F P A T I E N T V A L U E A N D P A T I E N T - C E N T R E D C A R E I N H E A L T H S Y S T E M S

© The Economist Intelligence Unit Limited 2019

ABOUT THIS REPORTCreating 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




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

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EXECUTIVE SUMMARYAll 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

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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 MEDICINEEchoes of a long-established hierarchyThe 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.

Meanwhile, genuinely shocking examples of medical paternalism in developed countries from this

century remain easy to find. In Japan, as late as 2005 many doctors did not disclose cancer diagnoses

to patients, despite a majority of the latter wanting to know,4 while the common use of electroshock

therapy, sometimes against patients’ wishes and without legal review, gave rise to concerns in

Australia’s state of Victoria in 2011.5 A similar lack of even basic communication occurs in developing

states too: a 2008 survey found that under half of relevant specialists in Brazil informed patients of

Alzheimer’s diagnoses,6 and a small 2018 study in China revealed that more than half of patients did not

know they had cancer until they started chemotherapy.7

These examples are extreme in degree, but not necessarily unique in nature. Although most clinicians

would now find them troubling, even today, ancient attitudes are still present, notes Roy Beveridge,

the chief medical officer at Humana who has also practiced oncology for more than 20 years. “I find

there is still a viewpoint in medicine which equates to ‘I went to medical school, so I know what is best

for you.’ Even physician language uses terms like ‘the patient was not compliant with medical orders.’”

The patient might not follow orders, however, not through uninformed rebelliousness but because of a

substantially different viewpoint. A 2013 review of 46 studies looking at doctor and patient preferences

1. Hippocrates, The Oath, Loeb Classic Library.

2. Dennis J Mazur, “Influence of the law on risk and informed consent,” BMJ, 2003.

3. https://www.picker.org/about-us/picker-principles-of-person-centred-care/

4. H Miyata et al. “Disclosure preferences regarding cancer diagnosis and prognosis: to tell or not to tell?” Journal of Medical Ethics, 2005.

5. “Mental health care inquiry,” The Age, September 6th 2011.

6. Irina Raicher et al, “Alzheimer’s disease diagnosis disclosure in Brazil: a survey of specialized physicians’current practice and attitudes,” International Psychogeriatrics, 2008.

7. Yuxiu Liu et al, “Disclosure of cancer diagnosis in China,” Cancer Management and Research, 2018.

https://www.loebclassics.com/view/hippocrates_cos-oath/1923/pb_LCL147.299.xml

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC200811/pdf/bmj32700731.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC200811/pdf/bmj32700731.pdf

https://www.picker.org/about-us/picker-principles-of-person-centred-care/


https://jme.bmj.com/content/medethics/31/8/447.full.pdf



https://www.theage.com.au/national/victoria/mental-health-care-inquiry-20110905-1juiy.html

http://www.princeton.edu/~dtakahas/publications/Raicher et al - 2008 - Alzheimer s disease diagnosis disclo




https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6061405/pdf/cmar-10-2173.pdf

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6061405/pdf/cmar-10-2173.pdf

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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 healthcareThe 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

governments that are facing resource limitations, with the resultant increased power that payers

are demanding from clinicians over decision-making.

These developments have collectively brought into question the financial sustainability of provider-

focused and -controlled healthcare, while reducing the knowledge asymmetry and social deference

that undergirded the relative power of clinicians within health systems in the past. The old ways of

8. Axel Mühlbacher and Christin Juhnke “Patient Preferences Versus Physicians’ Judgement: Does it Make a Difference in Healthcare Decision Making?” Applied Health Economic and Health Policy, 2013.

9. Jim Oeppen and James Vaupel, “Broken Limits to Life Expectancy,” Science, 2002.

https://www.researchgate.net/profile/Christin_Juhnke/publication/236081410_Patient_Preferences_Versus_Physicians'_Judgement_Doe



http://science.sciencemag.org/content/296/5570/1029

http://science.sciencemag.org/content/296/5570/1029




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

of appointments or operations, toward one on value. The latter is defined as the outcomes of

interventions divided by their cost. In other words, results matter more than the extent of activity.10

The hoped-for impact is not only better outcomes but, eventually, a reduction in waste and therefore

costs within the healthcare system. In this way, patients and payers are both further ahead.

Numerous studies of VBHC have shown improved clinical outcomes of different kinds. To date,

evidence for cost benefits has been mixed.11 This, though, may reflect the variety of value-based

approaches being trialled, start-up costs and time to gain familiarity with new processes. A recent

survey of 120 American payers suggests that economic benefits have finally begun to appear. It found

that, on average, value-based care strategies had reduced medical costs at organisations that had

adopted them by 5.6% in the past year.12

Whatever the teething problems, VBHC now dominates thinking on healthcare reform. It is a formal

policy goal in places as diverse as the US, the UK, Japan and several Spanish regions, to name a few

jurisdictions.13

10. The first major statement explaining and advocating VBHC was Michael Porter and Elizabeth Teisberg, Redefining Health Care: Creating Value-based Competition on Results, 2006.

11. Lawton Burns and Mark Pauly, “Transformation of the Health Care Industry: Curb Your Enthusiasm?” Millbank Quarterly, 2018; David Bailey, “Value-Based Care Alone Won’t Reduce Health Spending and Improve Patient Outcomes,” Harvard Business Review, 2017.

12. ORC International, Finding the Value in Value Based Care, 2018.

13. For an extensive discussion of value-based care and its state in various countries, see the Economist Intelligence Unit’s dedicated web hub.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/1468-0009.12312

https://onlinelibrary.wiley.com/doi/pdf/10.1111/1468-0009.12312

https://hbr.org/2017/06/value-based-care-alone-wont-reduce-health-spending-and-improve-patient-outcomes



https://img04.en25.com/Web/ChangeHealthcare/%7Beb100b38-9ec2-492f-b87b-b3c30d97fca1%7D_CHC_State-of-VBC-in-2018-Research-Study.

https://img04.en25.com/Web/ChangeHealthcare/%7Beb100b38-9ec2-492f-b87b-b3c30d97fca1%7D_CHC_State-of-VBC-in-2018-Research-Study.

http://vbhcglobalassessment.eiu.com/

http://vbhcglobalassessment.eiu.com/

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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

impacts on transportation costs, caregiver burden, or work disruption. In some cases, there may be

only one clinical option that is ethically available, but even then there are other things about care which

you can personalise.”

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

and life goals when choosing between treatment options.16

14. For a discussion of the different concepts of value, see Muir Gray et al, How to Get Better Value Healthcare, 2017.

15. Eleanor Perfetto et al, “Value to Whom? The Patient Voice in the Value Discussion,” Value in Health, 2017.

16. Marc Boutin, “The Patient Trifecta: A Basis for a Truly Patient-Centric Health System,” American Journal of Pharmacy Benefits, 2015

https://www.valueinhealthjournal.com/article/S1098-3015(16)34122-5/pdf

https://www.valueinhealthjournal.com/article/S1098-3015(16)34122-5/pdf

https://www.ajpb.com/journals/ajpb/2015/ajpb_septemberoctober2015/the-patient-trifecta-a-basis-for-a-truly-patient-centric-health-system

https://www.ajpb.com/journals/ajpb/2015/ajpb_septemberoctober2015/the-patient-trifecta-a-basis-for-a-truly-patient-centric-health-system




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 healthcareVBHC 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”.

12



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.

A finding from the survey of patient groups, conducted as part of the research for this report, is

instructive here. When asked about the biggest contribution that information technology (IT) could

make to patient-centricity, many respondents pointed to IT’s ability to simplify interaction with

clinicians, either by opening new channels of communication or making it easier to book traditional

medical appointments. Direct access to their own health records and independent data analysis,

by contrast, were cited as relevant by only a minority of respondents. Patient-centred care is about

partnering with, not removing, clinical experts.

But does patient-centred care work? The answer depends on what you are measuring and by what

yardstick. Studies have tended to look at specific initiatives that involve switching to a more patient-

centred approach in a particular area. Various literature reviews have shown either a positive link, or at

least no negative one, between patient-centric approaches and clinical effectiveness.18

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

found over the past two decades that health system user satisfaction is associated with good patient-

clinician communication and respect for patient autonomy.19 Considering at length the gains outside

17. For some of the more influential, see Picker Institute; “Picker Principles of Person Centred Care;” Institute of Medicine, Crossing the Quality Chasm: A New Health System for the 21st Century, 2001; World Health Organisation, “Framework on integrated, people-centred health services,” Sixty-ninth World Health Assembly A69/39: Provisional agenda item 16.1, 2016.

18. Cathal Doyle et al, “A systematic review of evidence on the links between patient experience and clinical safety and effectiveness,” BMJ Open, 2013; Lori Delaney, “Patient-centred care as an approach to improving health care in Australia,” Collegian, 2018.

19. Tomoko Kawashima, “What makes Patients Satisfied with their Healthcare? Nationwide Patient Experience Surveys in Japan,” Journal of Nursing & Care, 2015.



https://www.ncbi.nlm.nih.gov/pubmed/25057539

https://www.ncbi.nlm.nih.gov/pubmed/25057539

http://www.who.int/servicedeliverysafety/areas/people-centred-care/framework/en/

http://www.who.int/servicedeliverysafety/areas/people-centred-care/framework/en/

https://bmjopen.bmj.com/content/3/1/e001570.full.pdf




https://www.collegianjournal.com/article/S1322-7696(17)30042-2/pdf



https://www.omicsonline.org/open-access/what-makes-patients-satisfied-with-their-healthcare-nationwide-patient-experience-surve







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 progressWhatever 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.

14



CHAPTER 2:

THE PATIENT-CENTRED CARE SCORECARD Introducing the scorecardIn 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 resultsTable 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

rangeBrazil China France Germany Italy Japan Spain UK US

Strategy 1.1 Strategic plan and patients’ bill of rights

National strategy for patient-centred care

0-3 2 2 2 2 1 2 1 2 1

Bill/Statement of patients’ rights 1 0 1 1 1 0 1 1 11.2 National quality

standards for monitoring the implementation of patient-centred care

n/a 0-2 0 0 1 0 0 0 1 2 1

1.3 Value-based payment systems as provider incentives for implementation of patient-centred care

n/a 0-2 1 1 2 1 2 1 2 2 1

Provision 2.1 Education and support for healthcare staff

Education and training about the principles of patient-centred care for health professionals as part of the curriculum in medical/nursing schools

0-2 1 1 1 1 1 0 1 1 1

Support of health professionals in service settings

0 0 1 0 0 0 1 1 0

2.2 Continuity of care Existence of national clinical practice guidelines recommending co-ordinated and integrated patient care with multidisciplinary teams (selected conditions)

0-4 0 0 0 0 0 0 0 1 0

Accessibility of primary care, family doctor or usual doctor services for all

0 0 1 1 1 1 1 1 1

Ease of scheduling doctors’ appointments

0 0 1 1 1 1 1 1 1

Ease of navigation of health services 0 0 0 0 0 0 0 0 02.3 Patient access to

healthcareAccess to healthcare 0-3 1 0 2 2 1 1 1 2 1Access to innovations in healthcare 1 1 1 1 1 1 1 1 1

Delivery 3.1 Personalised care according to patients’ values and preferences

Personalised approach to patient care 0-3 0 0 0 0 0 0 0 1 0Holistic approach to patient care taking account of co-morbidities

0 0 2 0 0 0 1 0 2

3.2 Patient involvement in shared decision-making

National policies for shared decision-making

0-4 1 0 1 1 0 0 0 1 1

Patient aids for shared decision-making 0 0 1 1 0 0 1 1 1Patients’ right to access their own health record

0 0 1 1 1 1 1 1 1

Use of decision quality measures 0 0 0 1 0 0 0 1 1

16



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.

Table 1: Patient Centred Care Scorecard by domain, indicators and sub-indicators (using numeric values for scoring)Domain # Indicator Sub-indicator Score

rangeBrazil China France Germany Italy Japan Spain UK US

Patients 4.1 Use of patient-reported outcome measures (PROMs)

Use of PROMs in routine care 0-2 0 0 0 0 0 0 0 1 0Patient validation of PROMs 0 0 0 0 0 0 0 0 0

4.2 Patient advocacy groups

Existence of independent patient organisations with transparent funding

0-4 1 1 2 1 1 1 1 2 2

Patient/patient organisations involvement in policy development (eg, national plans/strategies/Health Technology Assessment [HTA])

1 0 1 1 1 1 1 1 1

Patient/patient organisations involvement in monitoring activities for policy implementation (eg, national plans/strategies/HTA)

0 0 0 0 0 0 0 0 0

4.3 Patient empowerment

Availability of reliable patient information (targeted at patients)

0-3 1 0 1 1 1 1 1 1 1

Availability of health education initiatives (targeted at the general population)

1 1 1 1 1 1 1 1 1

Use of patient empowerment assessment tools by healthcare providers

0 0 0 0 0 0 0 1 1

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)




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.

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

Table 2: Scorecard by alignment to patient-centred careKey: 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 patients’ bill of rights

High Moderate High High Moderate Moderate Moderate High Moderate

National quality standards for monitoring the implementation of patient-centred care

Low Low Moderate Low Low Low Moderate High Moderate

Value-based payment systems as provider incentives for implementation of patient-centred care

Moderate Moderate High Moderate High Moderate High High Moderate

Provision Education and support for healthcare staff

Moderate Moderate High Moderate Moderate Low High High Moderate

Continuity of care Low Low Moderate Moderate Moderate Moderate Moderate High Moderate

Patient access to healthcare

Moderate Low High High Moderate Moderate Moderate High Moderate

Delivery Personalised care according to patients’ values and preferences

Low Low Moderate Low Low Low Low Low Moderate

Patient involvement in shared decision-making

Low Low High High Low Low Moderate High High

Patients Use of patient-reported outcome measures (PROMs)

Low Low Low Low Low Low Low Moderate Low

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)

20. National Voices, Person-centred care in 2017: Evidence from service users, 2017.

https://www.nationalvoices.org.uk/sites/default/files/public/publications/person-centred_care_in_2017_-_national_voices.pdf

https://www.nationalvoices.org.uk/sites/default/files/public/publications/person-centred_care_in_2017_-_national_voices.pdf

18



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-makingIndicator Sub-indicator Brazil China France Germany Italy Japan Spain UK US

Patient involvement in shared decison-making

National policies for shared decision-making

1 0 1 1 0 0 0 1 1

0 = No/Not reported; 1 = National policies for shared decision-making exist.

20



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.

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

to integrate patient-centricity into medical education, Ms Nishimura reports that “in recent years,

attempts to understand patients, such as inviting patients as guest speakers, are expanding.”

Table 4: Value-based paymentsIndicator Sub-indicator Brazil China France Germany Italy Japan Spain UK US

Value-based payment systems as provider incentives for implementation of patient-centred care

n/a 1 1 2 1 2 1 2 2 1

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.

Table 5: Education and support for healthcare staffIndicator Sub-indicator Brazil China France Germany Italy Japan Spain UK US

Education and support for healthcare staff

Education and training around the principles of patient-centred care for health professionals as part of the curriculum in medical nursing schools

1 1 1 1 1 0 1 1 1

Support of health professionals in service settings

0 0 1 0 0 0 1 1 0

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.

21. Economist Intelligence Unit, Value-based healthcare country snapshot: Spain, 2016.

http://vbhcglobalassessment.eiu.com/wp-content/uploads/sites/27/2016/09/EIU_SPAIN_snapshot_r1.pdf

http://vbhcglobalassessment.eiu.com/wp-content/uploads/sites/27/2016/09/EIU_SPAIN_snapshot_r1.pdf




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,

because inviting non-professionals to have an equal status is a threat to one’s standing.” Addressing this,

by recognising the separate expertise that patients and clinicians bring, is essential for progress.

22. For a discussion of the general high barriers of change in healthcare, see Clayton Christensen et al, The Innovator’s Prescription, 2009.

22



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

those with genes associated with breast cancer, use of these aids led to more selecting these newer or

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

system resources, although not enough studies had been done on cost-effectiveness to say anything

with certainty.25

A shift to patient-centred, integrated care may require investment, but, as with VBHC as a whole, long-

term costs need not grow and may even decrease.

A final barrier is that even those well-disposed to patient-centricity are still feeling their way forward in

a very complex field. “A lot of people and organisations are talking about it, but not fully understanding

it,” says Ms Perfetto. She adds that the transition will be “multifaceted like any other complex

behavioural change and requires making sure that everyone has a common understanding of what it

23. Sara Kreindler, “The politics of patient-centred care,” Health Expectations, 2013

24. See, for example, Grant Martsolf et al, “Cost of Transformation among Primary Care Practices Participating in a Medical Home Pilot,” Journal of General Internal Medicine, 2016, which looks at the costs of changing from a traditional primary care practice to a patient-centred medical home in the US.

25. Dawn Stacey et al, “Decision aids for people facing health treatment or screening decisions,” Cochrane Database of Systematic Reviews, 2017

https://onlinelibrary.wiley.com/doi/epdf/10.1111/hex.12087

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4907938/pdf/11606_2015_Article_3553.pdf



https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001431.pub5/epdf/abstract






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.”

An advisory board member insisted that an

essential element of making health systems

truly patient-centred is to “make shared

decision-making real. It is a radical idea.”

Unfortunately for something so important,

no single, accepted definition exists. A

2007 literature review found that roughly

a quarter of studies of the topic either did

not bother defining shared decision-making

or did so in an idiosyncratic way.26 Later, in

2015 another analysis noted that the varying

definitions across the literature made it

difficult to say much about its impact.27

This has implications beyond the analytical.

Axel Mühlbacher, professor of health

economics and healthcare management

at the Institut Gesundheitsökonomie und

Medizinmanagement (Health Economics and

Healthcare Management Institute) in Germany

notes that shared decision-making is lacking

“a single, systematic approach toward how

communication about patients’ preferences

between doctors and patients should be

organised.”

Discussions of the concept therefore inevitably

need to fall back on the technique of calling

something a duck if it walks and quacks like

one. What, then, are this bird’s attributes?

At a minimum, as one study28 put it, three

elements are essential:

recognising and acknowledging that a

decision is required;

knowing and understanding the best

available evidence; and

incorporating the patient’s values and

preferences into the decision.

This, however, could describe a kind of

advanced version of informed consent where

the clinician diagnoses a condition and then

presents a menu of options from which

the patient can choose based on whatever

considerations seem relevant.

Shared decision-making is much more,

explains Alan Balch, CEO of the US National

Patient Advocate Foundation. “It should start

with a conversation about what matters to

you as a person. What are your goals? What is

your work and social environment like? What

elements of quality of life are important to

you?” The doctor, like a good service provider in

other sectors, should then indicate what sorts

of treatments might best meet that individual

patient’s needs, bounded by treatment

guidelines and incorporating cost of care into

the discussion.

Rather than an asymmetry of knowledge

giving power to one side in the conversation,

both bring something to the discussion, adds

Mr Balch. “The patient is the expert on what

is important to them. The healthcare provider

should have expertise around the medical

science and how it could be used. Combining

BOX: A RADICAL DUCK: WHAT IS SHARED DECISION-MAKING?

26. N Moumjid et al, “Shared decision making in the medical encounter: are we all talking about the same thing?” Medical Decision Making, 2007.

27. L Shay and J Lafata, “Where is the evidence? A systematic review of shared decision making and patient outcomes,” Medical Decision Making, 2015.

28. France Légaré and Holly Witteman, “Shared Decision Making: Examining Key Elements And Barriers To Adoption Into Routine Clinical Practice,” Health Affairs, 2013.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4270851/



https://www.healthaffairs.org/doi/abs/10.1377/hlthaff.2012.1078?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_



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those two sets of information together to

determine the right care plan for that patient at

the current time is where co-creation happens.

You can have a back and forth.”

For such discussions to be meaningful, notes

James Morrow, a general practitioner (GP) in

England’s NHS, it often requires more than new

types of conversations between patient and

clinician. Broad systemic change may also be

necessary so that “patients are able to express

themselves in a way that they are respected:

making patients wait a long time in a waiting

room is disempowering; making them take

snap decisions is disempowering; making

them take decisions while lying on their backs

can be disempowering. Respecting their time,

dignity and right to go away and think should

be viewed as part of good care.”

Shared decision-making also has important

limitations. To begin with, whoever makes the

decision may still have a very limited number

of choices: medicine may provide patients with

certain conditions only one viable option, or

even none.

Next, to understand potential available

therapies fully, patients may need extensive

assistance. As Isabella Erb-Herrmann

—Bevollmächtigte des Vorstandes

(representative of the management board) at

German insurer AOK Hessen—explains, “if we

are talking about patients coming to make and

discuss proposals, they need to be informed to

a high-quality level of health literacy.”

Accordingly, AOK Hessen offers substantial

information resources for patients. Here,

though, the scorecard indicates the need

for further progress across study countries,

with patient decision aids widely available in

just four study countries (Germany, Spain,

the UK and the US) and seeing substantial

development in one (France).

Finally, shared decision-making should not

become as much a barrier to patient autonomy

as its absence. Yukiko Nishimura, president and

founder of the Advocacy Service for Rare and

Intractable Diseases’ multi-Stakeholders in

Japan, explains that some patients genuinely

feel more comfortable with doctor-directed

care, with attitudes frequently differing by

age, disease or even family environment. Dr

Morrow agrees that, whether patients want

extensive facts before picking an option,

“varies by individual and by condition. It is a

valid choice to make a conscious decision to go

with what a clinician thinks best. Forcing those

patients into a multiple choice about what they

want fails to respect their desire for an adviser.”

Although we did not address this topic

directly in our survey, it is perhaps relevant

here that, with respect to shared decision-

making, respondents were more likely to put

an emphasis on the importance of having

accurate information on side-effects, and on

family members and carers being able to take

part in discussions, than on the existence of

a list of options from which a patient could

choose.

But does shared decision-making work?

It is a matter of what is being measured. A

2015 review found very few relevant studies

available. Although only 4% of these showed

any negative results from shared decision-

making, too little evidence existed to claim

with certainty that it led to better clinical




outcomes. On the other hand, a link between

shared decision-making and higher levels of

patient satisfaction and understanding did

come through. These are not lesser cousins

to traditional clinical results. As one advisory

board member put it, “clinical outcomes are

important, but personal goals and aspirations

matter too.”

Notably, in the 2015 review shared decision-

making’s benefits occurred only when the

patients believed that they had shared in the

decision. Research that looked at results where

only clinicians identified whether shared

decision-making had taken place showed no

improvement over the norm. In other words,

patients genuinely have to feel part of the

process for it to be helpful. “The challenge

with these findings,” the study concluded, “is

that we do not know what leads a patient to

report a decision as shared, and thus do not

know how to foster shared decision-making

and its associated benefits in practice.”29 They

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.




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CHAPTER 4:

HEALTH SYSTEMS THAT STILL NEED WORKDoing 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

appointment-making or interaction with clinicians are now far from remarkable. For some patients,

even going to see GPs in person may soon be a thing of the past. In 2017 the NHS began trialling

smartphone consultations in London and, in 2018, both the Japanese and French health systems have

introduced payments for clinicians who interact in this way.31

Access to records: a (small) step in the right directionThe scorecard also shows at least one sign of a noticeable shift toward a more patient-centred

approach. Every country except Brazil and China gives patients the right to access their healthcare

records (see Table 6). This is a significant cultural change, and a necessary one if patients are to play a

truly equal role in decision-making.

Table 6: Patients’ right to access their own health recordIndicator Sub-indicator Brazil China France Germany Italy Japan Spain UK US

Patient involvement in shared decision-making

Patients right to access their own healthcare records

0 0 1 1 1 1 1 1 1

0 = No/Not reported; 1 = Patients have the right to access their own health record.

30. Global Access to Healthcare: Building sustainable health systems, 2017.

31. “NHS offers smartphone GP appointments,” BBC News, November 6th 2017; “Telemedicine via smartphone apps gaining in popularity in Japan,” Japan Times, September 18th 2018; French Ministry of Health, Arrêté...portant approbation de l’avenant no 6 à la convention nationale organisant les rapports entre les médecins libéraux et l’assurance maladie signée le 25 août 2016, August 1st 2018.

https://perspectives.eiu.com/sites/default/files/Globalaccesstohealthcare-3.pdf

https://perspectives.eiu.com/sites/default/files/Globalaccesstohealthcare-3.pdf

https://www.bbc.co.uk/news/health-41884142

https://www.bbc.co.uk/news/health-41884142

https://www.japantimes.co.jp/news/2018/09/18/national/science-health/telemedicine-via-smartphone-apps-gaining-popularity-japan/

https://www.japantimes.co.jp/news/2018/09/18/national/science-health/telemedicine-via-smartphone-apps-gaining-popularity-japan/

http://www.agir-telemedecine.org/wp-content/uploads/2018/08/Convention-AM-Lib%C3%A9raux-et-t%C3%A9l%C3%A9m%C3%A9decine.pdf








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.

Still not looking patient-centricThe scorecard shows that countries are moving far more slowly in more substantial elements of care

integration and personalisation. This is a particularly striking finding given the relative strength of most

of the included health systems compared with others across the globe.

Our research found little indication of clinicians taking a personalised approach to individual patients

in general, with only France and the US having doctor’s appointments 15 minutes long (this served as

a proxy indicator for countries’ approaches to patient care that took into account co-morbidities; see

Table 7).

32. Lidia Di Minco, “Electronic Health Record (EHR): Implementation in Italy,” conference presentation, April 5th 2017.

33. Boston Healthcare, “Digital health expands in Germany, providing new opportunities for global medical device and diagnostics innovators,” [2018]; “Give patients access to their medical records,” BMJ, 2017.

34. Anna Essén et al, “Patient access to electronic health records: Differences across ten countries,” Health Policy and Technology, 2018.

35. Elske Ammenwerth, “Adult patient access to electronic health records,” Cochrane Database of Systematic Reviews, 2017.

https://www.consorzioarsenal.it/c/document_library/get_file?uuid=ac838533-9ec4-4546-95f3-2356170acc43&groupId=10157

https://www.consorzioarsenal.it/c/document_library/get_file?uuid=ac838533-9ec4-4546-95f3-2356170acc43&groupId=10157

https://bostonhealthcare.com/digital-health-expands-in-germany/




https://www.bmj.com/content/357/bmj.j2151

https://www.bmj.com/content/357/bmj.j2151

https://www.healthpolicyandtechnology.org/article/S2211-8837(17)30072-2/pdf



https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD012707/epdf/full

https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD012707/epdf/full

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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.

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.”

The general difficulties in co-ordinating and integrating care are similar to the inherent barriers of

change in healthcare discussed earlier. Moreover, the particular challenges can vary by country: in Japan,

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

likely to be low spending on system innovation.37 As Mr Graham puts it, “systems need to do this in [their]

own context. What might work in the English NHS might not work in Germany, for example.”

Table 7: Holistic approaches to patient care taking account of co-morbiditiesIndicator Sub-indicator Brazil China France Germany Italy Japan Spain UK US

Personalised care according to patients’ values and preferences

Holistic approaches to patient care taking account of co-morbidities

0 0 2 0 0 0 1 0 2

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.

Table 8: Existence of national clinical practice guidelines recommending co-ordinated and integrated patient care with multidisiplinary teams (selected conditions)Indicator Sub-indicator Brazil China France Germany Italy Japan Spain UK US

Continuity of care Existence of national clinical practice guidelines recommending co-ordinated and integrated patient care with multidisiplinary teams (selected conditions)

0 0 0 0 0 0 0 1 0

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.

36. Kiyoyuki Tomita, “Japanese Healthcare at a Crossroads (1): Toward Integrated Community Care,” Tokyo Foundation for Policy Research web page, 2017.

37. Ben Collins, “Adoption and spread of innovation in the NHS,” King’s Fund Paper, 2018.

http://www.tokyofoundation.org/en/articles/2017/japanese-healthcare-at-crossroads



https://www.kingsfund.org.uk/sites/default/files/2018-01/Adoption_and_spread_of_innovation_NHS_0.pdf

https://www.kingsfund.org.uk/sites/default/files/2018-01/Adoption_and_spread_of_innovation_NHS_0.pdf




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).

When health systems focus on preferred

outcomes for individuals, rather than the

volume of medical activity, the range of relevant

interventions grows rather than contracts. A

recent survey of both private and public US

health providers found that 81% are in some

way integrating into their activities matters

related to the social determinants of health.38

Roy Beveridge, chief medical officer of

Humana, explains that this is not simply a nice-

to-have. “We have to take care of the patient

holistically,” he says, “because, if we don’t, we

are not going to fix the disease. Perhaps the

patient is unable to fully participate in their

care because they couldn’t get to see you, or

their blood sugar levels may not be doing well

because they eat canned, sugary food since

that’s all they can afford. We need to think

about the patient more broadly.”

Humana demonstrates the range that such

activities can take.

Dr Beveridge says that the company identified

barriers to care through discussions with

thousands of its members to find out their

preferences and needs. This research showed

that “transportation for people with low

salaries is a huge issue. It is not that they are

not coming back to doctor because they don’t

want to. They can’t afford to take a cab.” In

response, the company’s Florida operations

have integrated into every Medicare insurance

policy free or assisted transportation to its

clinics. The uptake has been substantial.

Dr Beveridge reports that “the last time I was

in Miami, Humana seemed to be the biggest

bus service in Florida. It was probably not, but

a lot of people were using it.” The integration

BOX: HUMANA: LOOKING AT THE WIDER BOUNDARIES OF PATIENT-CENTRED CARE

38. Change Healthcare, The 8th Annual Industry Pulse Report, 2018.

http://images.discover.changehealthcare.com/Web/ChangeHealthcare/%7Bc995a7a2-d3e0-474a-8128-dc557f219569%7D_Change_Healthcare_I

http://images.discover.changehealthcare.com/Web/ChangeHealthcare/%7Bc995a7a2-d3e0-474a-8128-dc557f219569%7D_Change_Healthcare_I

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of different specialties and dispensing

pharmacies at some of Humana’s partner

clinics further improves the access to care from

a single bus ride.

Another issue that members frequently raise

with Humana is food insecurity, a state that

correlates with markedly higher probabilities

of having certain chronic conditions, such as

diabetes and heart disease.39 In partnership

with local food banks and Continucare,

a partner clinic chain, in 2016 the insurer

conducted a four-week pilot study in south

Florida of a possible intervention.

Regardless of insurance carrier, patients who

came to one of three designated clinics were

screened for food insecurity. Of the roughly

1,500 people screened, the 46% who tested

positive then were offered a referral to meet

a representative of the food bank who was

on-site, to which 86% agreed. Nearly all also

accepted an emergency food box from that

representative. Finally, as part of the project,

social workers worked with those identified

to help make sure that the latter were getting

their entitlement of US government Food

Stamps.40

As a result of the pilot, says Dr Beveridge,

Humana and its partners are currently

conducting a longer randomised trial to

determine if there are differences in hospital

admission rates and costs per member per

month between those connected up with food

banks and a control group who are not helped

to make such links.

This study is part of a bigger strategy. Humana’s

“Bold Goal” initiative is working with physician

practices, non-government organisations, and

academic, business and community leaders

across 11 US cities to find scalable, evidence-

based interventions to address various social

determinants of health, including not just food

insecurity but loneliness and social isolation.

This is not corporate social responsibility under

another name, but healthcare understood

broadly. Humana, says Dr Beveridge, is

studying various options with different costs

to see what is effective for a given population.

It will make decisions on which interventions

to scale up, based on those results. “We owe it

to each member to have a good idea what is

important to them,” he says, including while

they are still healthy. Doing so, he says, “will

keep them alive longer and we will spend less

money. That seems like a pretty good thing.”

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.

http://www.rimed.org/rimedicaljournal/2018/05/2018-05-28-cont-decker.pdf



http://populationhealth.humana.com/documents/Humana_BoldGoal_2018_ProgressReport.pdf

http://populationhealth.humana.com/documents/Humana_BoldGoal_2018_ProgressReport.pdf

https://www.healthcare-informatics.com/article/value-based-care/humana-s-cmo-speaks-bold-goal-embedded-its-population-health-work






Table 9: Use of patient empowerment assessment tools by healthcare providersIndicator Sub-indicator Brazil China France Germany Italy Japan Spain UK US

Patient empowerment

Use of patient empowerment assessment tools by healthcare providers

0 0 0 0 0 0 0 1 1

0 = No/Not reported; 1 = Use of patient empowerment assessment tools by health providers.

CHAPTER 5:

METRICS AND DATA GATHERING URGENTLY NEEDEDNo 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).

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

In short, PROMs transform the definition of a treatment’s success from whether it changed measurable

biomedical outcomes chosen by the health system to if, and how much, it made the patient feel better.

This makes them fundamental to patient-centred care.

41 For further detail, see Charlotte Kingsley and Sanjiv Patel, “Patient-reported outcome measures and patient-reported experience measures,” BJA Education, 2017 and Theresa Weldring and Sheree Smith, “Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs),” Health Services Insights, 2013.

https://academic.oup.com/bjaed/article/17/4/137/2999278



32



Table 10: Use of patient-reported outcome measures (PROMs) in routine careIndicator Sub-indicator Brazil China France Germany Italy Japan Spain UK US

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.

42 NHS Digital, “Patient Reported Outcome Measures (PROMs),” website accessed October 19th 2018.

43 National Joint Registry, “NJR StatsOnline,” website accessed October 19th 2018.

44 NHS England, National Patient Reported Outcome Measures (PROMs) Programme Consultation Report, 2017.

45 Birgit Prodinger and Paul Taylor, “Improving quality of care through patient reported outcome measures (PROMs),” BMC Health Services Research, 2018.

46 Birgit Prodinger and Paul Taylor, “Improving quality of care through patient reported outcome measures (PROMs),” BMC Health Services Research, 2018; Anja Desomer et al, Use of patient-reported outcome and experience measures in patient care and policy, 2018; Joanne Greenhalgh et al. “How do doctors refer to patient-reported outcome measures (PROMS) in oncology consultations?” Quality of Life Research, 2013.

47 Bianca Wiering et al, “Patient involvement in the development of patient-reported outcome measures: a scoping review,” Health Expectations, 2017.

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

commonly now are not nuanced enough to capture preferences and experiences driven by key factors

such as type of disease, stage of disease, age, racial/ethnic values, and logistical burdens.” While useful

in research on system-wide performance, for example, doctors and nurses are often unsure how

best to use them in interactions with individual patients, or even what a “good” result might be in any

given case.45

They also simply cannot be inserted into everyday care without other systemic changes. Clinicians who

would be disposed to use PROMs explain that they are reluctant to gather and apply the data involved

if it disrupts regular care. Further training, changes in workflow processes and payment for the time

involved would need adjustment.46

Such practical matters can be overcome with effort, but PROMs as currently being devised also need,

perhaps ironically, to become more patient-centric if they are to achieve their potential. A 2017 study of

PROMs developed in the US, UK and Germany found that in only 11% did patients have any—typically

a limited—involvement in selecting which outcomes to measure, and in 26% no patient consultation

took place on any aspect of the questionnaire.

Indeed, in just over only half of cases did the creators check if their PROM tool was comprehensible

to patients.47 This is consistent with Mr Graham’s experience: “It is not unusual to see them designed

without patient participation, but that means patients reporting on what clinicians think is important.”

New kinds of metrics: PREMs and PCOMs slowly appearingDelays in fulfilment of the promise of PROMs suggest that the further evolution of healthcare

measurement, an essential part of patient-centred care development, will take a long time. One such

https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/patient-reported-outcome-measures-proms

https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/patient-reported-outcome-measures-proms

http://www.njrcentre.org.uk/njrcentre/Healthcare-providers/Accessing-the-data/StatsOnline/NJR-StatsOnline

https://www.england.nhs.uk/wp-content/uploads/2017/10/proms-consultation-report.pdf



https://bmchealthservres.biomedcentral.com/track/pdf/10.1186/s12913-018-2898-z






https://www.nivel.nl/sites/default/files/bestanden/KCE_use_of_PROM_PREM.pdf



https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5217930/pdf/HEX-20-11.pdf






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).

48 Anja Desomer et al, Use of patient-reported outcome and experience measures in patient care and policy, 2018.

49 Ronen Rozenblum et al, “The patient satisfaction chasm: the gap between hospital management and frontline clinicians,” BMJ Quality Safety, 2013.

50 International Rare Diseases Research Consortium, Patient-Centered Outcome Measures Initiatives in the Field of Rare Diseases. 2016; R Bryant-Waugh, “What matters to me?: Development and use of a person centred outcome measure (PCOM) for parents of children with feeding disorders,” Poster presentation, BMJ Archives of Childhood Disease, 2017.

The focus of PROMs and PREMs are most

relevant to healthcare providers and payers,

not to mention patients. Other parts of the

health system are also trying to access patient

views, in particular those approving drugs and

setting their prices.

Numerous regulatory and health technology

agencies have patient representatives with

formalised roles in the approval process,

although not necessarily in the decision-

making itself. Axel Mühlbacher, professor of

health economics and healthcare management

at the Institut Gesundheitsökonomie und

Medizinmanagement (Health Economics

and Healthcare Management Institute) in

Germany, points out, however, that just

“having some patients sitting around the

table is window dressing.” In his country, for

example, patient advocates are present but

not able to vote, and they are not themselves

necessarily transparent about how they arrive

BOX: PATIENT PREFERENCE STUDIES AND DRUG DEVELOPMENT: MOVING BEYOND WINDOW DRESSING




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34



at the arguments they present as part of the

drug approval process. “There is no regular,

systematic and transparent documentation on

patient preferences,” he adds.

Accordingly, Mr Mühlbacher, says “a steadily

growing stream of patient preference studies”

has appeared. These attempt to provide more

robust patient input on questions such as

which unmet needs deserve priority in drug

development, the most appropriate things to

measure in clinical trials, and how to balance

potential benefits and risks of new products.

The field, though, remains at a very early stage.

Mr Mühlbacher notes that currently the US

Food and Drug Administration is furthest

ahead in the use of patient preference studies

as part of its efforts on patient-focused drug

development, issuing draft guidelines on

collecting patient input,51 while the European

Medicines Agency has engaged in pilot projects

in collecting such data.

One issue is potential cost. Mr Mühlbacher

explains that various methodologies for

patient preference studies are available, with

different benefits and drawbacks, but that a

reasonable study would normally cost around

US$200,000-US$300,000, while one with the

best available techniques in several countries

would reach about half a million. Whether this

is expensive, though, is a matter of perspective.

Mr Mühlbacher believes it is a small price

relative to the high cost of clinical trials in order

to get an accurate idea of whether patients

think a product is worth approving. “If we

pay 1% of the costs of clinical trials in order

to translate the clinical effects into value to

patients, it doesn´t seem a lot to me.”

Data bubble: whose data gets to matter?

People can now get a range of monitors for condition-specific symptoms, such as blood glucose levels

to more general tools, such as blood pressure meters. A personal electrocardiogram machine is easy to

acquire and home DNA testing (for both health and ancestry) is increasingly common. Fitness trackers

are also ubiquitous. Their integration into smart watches and other mobile devices, though, means

that most of the 115m wearables sold globally in 2017 alone52 can generate data on exercise levels, sleep

patterns and other aspects of health.

Mr Graham points out that “people have access to a fantastic richness of data, way beyond the details

of what professionals would have wanted.” The potential benefits of using patient-generated health

data (PGHD) in healthcare are substantial. Some doctors who have done so report deeper insight into

patients’ medical conditions, more accurate information and improved understanding of how patients

lived between clinical visits, allowing better care plans.53

On the other hand, PGHD presents challenges. With so many equipment and software producers, for

example, data quality can be uncertain. The way in which information is presented may not adhere to

standard clinical formats. The data are also sometimes incomplete, and patients may abandon devices

or regimens. Moreover, given the wide range of data falling under PGHD and its relatively recent

appearance as a major source of information, widespread evidence of its utility remains scant. Finally,

51 FDA, “Patient-Focused Drug Development: Collecting Comprehensive and Representative Input Guidance for Industry, Food and Drug Administration Staff, and Other Stakeholders DRAFT GUIDANCE,” June 2018.

52 IDC, “Global Wearables Market Grows 7.7% in 4Q17 and 10.3% in 2017 as Apple Seizes the Leader Position,” press release, March 1st 2018.

53 Deborah J Cohen et al, “Integrating Patient-Generated Health Data Into Clinical Care Settings or Clinical Decision-Making,” JMIR Human Factors, 2016; US Office of the National Coordinator for Health Information Technology, Conceptualizing a Data Infrastructure for the Capture, Use, and Sharing of Patient-Generated Health Data in Care Delivery and Research through 2024, 2018; AM Lai et al, “Present and Future Trends in Consumer Health Informatics and Patient-Generated Health Data,” IMIA Yearbook of Medical Informatics, 2017.

https://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM610442.pdf





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54 Peter West et al. “Information Quality Challenges of Patient-Generated Data in Clinical Practice,” Frontiers in Public Health, 2017; Peter West et al. “Common Barriers to the Use of Patient-Generated Data Across Clinical Settings,” Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems, Paper No. 484, 2018; AM Lai et al, “Present and Future Trends in Consumer Health Informatics and Patient-Generated Health Data,” IMIA Yearbook of Medical Informatics, 2017; US Office of the National Coordinator for Health Information Technology, Conceptualizing a Data Infrastructure for the Capture, Use, and Sharing of Patient-Generated Health Data in Care Delivery and Research through 2024, 2018.

55 “Linking patient health data is a huge opportunity for the UK,” EIU Perspectives, June 29th 2018.

56 Conceptualizing a Data Infrastructure for the Capture, Use, and Sharing of Patient-Generated Health Data in Care Delivery and Research through 2024, 2018.

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.

The substantial potential benefits, though, make engaging with PGHD worth the effort of overcoming

the inherent challenges. Indeed, notes Ms Perfetto, “we might be moving to a day where the clinician

will not have much choice. We will likely reach a point where data capture is automatic.” The English

NHS is trying to get ahead of the curve, encouraging the private sector to develop apps through

which patients with chronic conditions can produce data that will eventually integrate seamlessly into

electronic health records.55

For now, however, health systems face problems that are all too common in the search for patient-

centred care. A recent study from the US Office of the National Co-ordinator for Health Information

Technology notes that: “Many health care systems, clinical practices of varying sizes and research

institutions lack the technical infrastructure, functional workflows, workforce capacity and training to

support PGHD intake.” Not only do they struggle to derive insight from the data available “they worry

that receiving PGHD from patients may add to their workloads and disrupt their workflows.”56 As with

so much in patient-centred healthcare, taking advantage of PGHD will require a wider rethink of how

health systems work and reward activity.

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36



CHAPTER 6: LESSONS FROM CHINA: PATIENT-CENTRED WITHOUT A PATIENT VOICE? Effort is necessaryIn 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

clinicians.

But not all effort succeeds

The most instructive national results, however, are from China.

The country is a consistently weak performer, gaining full marks on none of the 11 indicators and on just

four of the 26 sub-indicators. Often in benchmarking studies containing countries at different stages

of development, those with emerging markets do worse than richer ones because of fewer available

resources. In this case, however, the explanation is far more complex.

To begin with, money for change is not necessarily an issue. China has been engaged in widespread

health system reform since 2009, backed by extensive state investment. Total annual government

and compulsory scheme healthcare spending more than tripled between that year and 2015, reaching

US$338bn.61 This growth was roughly 1.5 times that of GDP during the same period. Among the leading

57 Ruth Thorlby and Jo Maybin, A high-performing NHS? A review of progress 1997-2010, 2010.

58 Kenji Shibuya et al eds, Japan Health System Review, 2018; Economist Intelligence Unit, The shifting landscape of healthcare in Asia-Pacific, 2015; OECD, OECD Reviews of Health Care Quality: Japan, 2014.

59 Makoto Kaneko, “Current trends in Japanese health care: establishing a system for board-certificated Gps,” British Journal of General Practice, 2017.

60 Report available at: https://www.y-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 / 20151221132002_77dW.pdf

61 WHO Global Health Expenditure Database, accessed October 27th 2018.

https://www.kingsfund.org.uk/sites/default/files/high-performing-nhs-progress-review-1997-2010-ruth-thorlby-jo-maybin-kings-fun



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https://www.janssen.com/sites/www_janssen_com_apac/files/eiu_healthcare_in_asia_english_final.pdf

https://www.janssen.com/sites/www_janssen_com_apac/files/eiu_healthcare_in_asia_english_final.pdf

https://www.oecd.org/els/health-systems/ReviewofHealthCareQualityJAPAN_ExecutiveSummary.pdf

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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

recently called the country’s health system “hospital-centric, fragmented and volume driven. Service

delivery has a strong bias toward doing more treatment than improving population health outcomes

and serving more people at hospitals rather than at grassroots levels.” 67

As for patients themselves, the report said that “a much-needed comprehensive, system-wide

approach to engage citizens in health, with well-defined roles for patients and providers, is still missing.

China’s health system needs to become more patient-centred. Concerns about quality of care and

providers not acting in the patient’s interest have eroded citizen trust in the system.” 68

A muffled patient voiceMany reasons help explain the failure of policy since 1997, and the 2009 reforms in particular, to create

the aimed-for integrated health system. One is of particular relevance to this report.

The patients themselves remain noticeably absent from efforts to shape transformation. Patient-

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

patients.69

Attempts at change in recent years have been made with evident sympathy for patients: Mr Liu notes

that policymakers take note of media reports and academic research on patient difficulties with the

system, such as families suffering from catastrophic costs. Nevertheless, he explains that there is “a lack

of formal platforms or transparent channels through which people can have their voices feed into the

62 Zhu Chen, “Launch of the health-care reform plan in China,” Lancet, 2009.

63 Jingqing Yang, “The side-effects of China’s patient-centred healthcare reform,” Social Policy Association [UK] conference paper, 2010; Central Committee of the Communist Party of China, 关于卫生改革与发展的决定 [Decision on health reform and development], January 15th 1997.

64 Gordon Liu et al, “China’s Health Reform Update,” Annual Review of Public Health, 2017.

65 National Bureau of Statistics China, “Health Care Institutions,” Table 22-1, China Statistical Yearbook 2015, 2015.

66 Xi Li et al, “The primary health-care system in China,” Lancet, 2017.

67 Deepening Health Reform In China: Building High-Quality And Value-Based Service Delivery, 2016.

68 Ibid.

69 Jingqing Yang, “The side-effects of China’s patient-centred healthcare reform,” Social Policy Association [UK] conference paper, 2010.

https://www.thelancet.com/action/showPdf?pii=S0140-6736%2809%2960753-4

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38



70 Gordon Liu et al, “China’s Health Reform Update,” Annual Review of Public Health, 2017.

71 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.

72 Gordon Liu et al, “China’s Health Reform Update,” Annual Review of Public Health, 2017; 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.

73 William Wong et al, “Primary care workforce and continuous medical education in China,” BMJ Open, 2017; William Wong et al, “Availability and use of primary care facilities in China: a nationwide representative survey,” Lancet (poster abstract), 2016.

74 Xi Li et al, “The primary health-care system in China,” Lancet, 2017.

75 Cheris Chan, “Mistrust of physicians in China: society, institution, and interaction as root causes,” Developing World Bioethics, 2017.

76 “Chinese doctor stabbed to death after row with patient’s husband,” South China Morning Post, March 15th 2018; “Beaten, stabbed and threatened: who’d want to be a doctor in China?” Inkstone, March 16th 2018; “China’s Health Care Crisis: Lines Before Dawn, Violence and ‘No Trust,’” New York Times, September 30th 2018.

77 Therese Hesketh et al, “Violence against doctors in China,” BMJ, 2012.

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.”

The explanation is twofold. First, increased insurance coverage has allowed more use of secondary

and tertiary care rather than needing to rely on local facilities. More important, patients are convinced

that the quality of care available in primary institutions is far inferior to that in hospitals, especially

major ones in large cities.70 Accordingly, China’s tertiary hospitals, which make up 8% of healthcare

institutions, account for 48% of outpatient activity.71 They are swamped, unable to keep up with

demand, with patients waiting from 2.5 to 8 hours in order to have a 15-minute consultation.72

By some measures, patients have a point about primary care: roughly half of those practising as

GPs in grassroots clinics lack even a bachelor’s degree; only 64% of clinics are equipped to do basic

gynaecological examinations; and misdiagnosis is common.73 However, extremely brief occasional

outpatient appointments with overworked but better trained clinicians do not necessarily lead to

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

hospitals compared with those using primary clinics.74

Getting people to use primary facilities may require better clinicians, but communication with patients

will also be necessary so that health planners can understand what would make them more attractive.

Such interaction will also be needed to solve another major issue bedevilling Chinese healthcare.

Patient lack of faith in primary clinicians is part of a wider mistrust of all medical personnel. One recent

two-year ethnographic study found that almost all the patients and family members it interviewed

distrusted physicians to some degree.75 Indeed, violence against doctors and nurses by unsatisfied

patients—known as yi nao, or medical disturbance—has for some years been a major social problem.

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

that since 2016 it had prosecuted 7,816 people for intentionally injuring medical staff or inciting crowds

at hospitals.76 Disgruntled patients can even hire specialised criminal gangs to intimidate clinicians to

get better care.77

The strained relations between patients and clinicians is not a result of poor levels of technical

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,

these clinicians have “very, very limited time for interaction. Chinese patients would value a better


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https://www.scmp.com/news/china/society/article/2137374/chinese-doctor-stabbed-death-after-row-patients-husband

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78 国家卫计委等三部门亮“组合拳”防控伤医医闹行为 The National Health and Family Planning Commission and three other 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.

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.”

Without a greater patient role, however, the results of Chinese efforts to implement patient-centred,

integrated care will show the extent and limits of what can be done without actively partnering with

patients.





40



CHAPTER 7:

ENGAGING PATIENTS AND PATIENT COMMUNITIES ONE AT A TIMESome patients are more central than othersWhat 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.

“The health system is aware of this and always looking over its shoulder with regard to these conditions 81 Benchmarking the Patient Movement, 2018.

http://www.patient-view.com/bull-benchmarking.html




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 epilepsyJust 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

42



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 necessaryThis 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.

Instead, patients, families and health systems need to collectively move to a point where partnership

for all conditions is the expectation rather than the exception. In such an environment, the necessary

82 Economist Intelligence Unit, Ancient enemy, modern imperative: A time for greater action against tuberculosis, 2014.

https://www.tbalert.org/wp-content/uploads/2014/09/Ancient-enemy-modern-imperative.pdf






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.”

44



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 PARTNERSHIPS · The results 15 Chapter 3: Patient-centricity: The gap between grand strategy and detailed policy 19 ... Creating healthy partnerships: The role of