ADOPTION OF PATIENT- CENTRED CARE: FINDINGS AND … · The Economist Intelligence Unit Limited 2019 1 ADOPTION OF PATIENTfiCENTRED CARE: FINDINGS AND METHODOLOGY RESEARCH REPORT 2

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ADOPTION OF PATIENT-CENTRED CARE: FINDINGS AND METHODOLOGYRESEARCH REPORT

1© The Economist Intelligence Unit Limited 2019

ADOPTION OF PATIENT-CENTRED CARE: FINDINGS AND METHODOLOGYR E S E A R CH R E P O RT

2 About this report

4 Project overview

6 The scorecard

6 Scorecard methodology

6 Scorecard findings

12 The survey

12 Survey methodology

13 Survey findings

13 Section A: Comparison between the scorecard and survey results

15 Section B: The importance of different dimensions of patient-centred care

24 Section C: Patient experience and perception of patient-centred care

28 Discussion and limitations

30 Appendix A: Selection of therapy areas for survey

32 Appendix B: Scorecard framework and detailed indicator descriptions

40 Appendix C: Mapping schema

41 Appendix D: Table of country scores

43 Appendix E: Survey questionnaire

48 References

CONTENTS

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© The Economist Intelligence Unit Limited 2019

ABOUT THIS REPORTThis report describes the methods and main findings from The Economist Intelligence Unit’s

assessment of the adoption of the principles of patient-centred care in nine countries. The research

programme consisted of a health policy scorecard and a survey of patient organisations. In addition

to this document we have also authored a white paper, “Creating healthy partnerships: The role of

patient value and patient-centred care in health systems,” based on the findings presented in this

report, as well as additional research and a series of interviews. The study was sponsored by UCB, a

global biopharmaceutical company.

The Economist Intelligence Unit bears sole responsibility for the content of this report and the

associated white paper. The views expressed in the report do not necessarily reflect the views of the

sponsor.

We would like to thank the following individuals and organizations for sharing their insights and

experience.

International expert advisory panel

Jessica Beagley (NCD Alliance, UK)

Nicola Bedlington (European Patients Forum, Belgium)

Marc Boutin (National Health Council, US)

Angela Coulter (University of Oxford, UK)

Chris Graham (Picker Institute Europe, UK)

Karin Jay (Planetree, US)

Sarunas Narbutas (Lithuanian Cancer Patient Coalition, Lithuania)

Survey respondents (by country)

PSORIERJ (Brazil)

Rede Nacional Pessoas Vivendo Com HIV e AIDS (Brazil)

Associação Brasileira de Epilepsia (Brazil)

SOBRAO (Brazilian Society of Osteoporosis) (Brazil)

Brazilian Association for Attention Deficit Disorder (Brazil)

Peking University Sixth Hospital, Institute of Mental Health (China)

Osteoporosis Committee of China Gerontological Society (China)

International League Against Epilepsy (China)

Ark of Love (China)

Psoriasis Patient Alliance (China)

France Dépression (France)

Association Française de Lutte Anti Rhumatisme (France)



Psoriasis Entraide 56 (France)

AIDES (France)

EPI Bretagne (France)

Deutscher Psoriasis Bund e.V. (Germany)

Deutsche AIDS-Hilfe (Germany)

Osteoporose Selbsthilfegruppe (Germany)

Deutsche Epilepsievereinigung (Germany)

Psychosocial Support Association Saxony eV (Germany)

ARAP (Italy)

ANLAIDS (Italy)

Italian Federation of Osteoporosis and Diseases of the Skeleton (Italy)

Associazione per la Difesa degli Psoriasici (Italy)

Federazione Italiana Epilessie (Italy)

INSPIRE JAPAN WPD - The Japanese Association for Public Awareness of Psoriasis/Japan Psoriasis

Association ( Japan)

Japan Osteoporosis Foundation ( Japan)

Japan Epilepsy Association ( Japan)

Japanese Network of People Living with HIV/AIDS ( Japan)

Kagoshima Mental Health and Welfare Centre ( Japan)

ApoyoDravet (Spain)

Foro Español de Pacientes (Spain)

Acción Psoriasis (Spain)

Asociación Española Contra La Osteoporosis (Spain)

BCN Checkpoint (Spain)

Rethink Mental Illness (UK)

Psoriasis and Psoriatic Arthritis Alliance (UK)

National Osteoporosis Society (UK)

SUDEP Action (UK)

Positively UK (UK)

Mental Health America (US)

U.S. Bone and Joint Initiative, National Osteoporosis Foundation, and American Society for Bone

and Mineral Research (US)

Epilepsy Foundation (US)

AIDS Action Foundation (US)

National Psoriasis Foundation (US)

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PROJECT OVERVIEWProject objectivesThe aim of this research programme is to identify what is important to patients and to what extent

health systems have been built around their values and preferences. To understand these points, we

have developed a benchmarking tool—a scorecard—to evaluate the existing policy environment and

assess the degree of implementation of national policies into healthcare practices. The scorecard

framework brings together a set of indicators to provide proxy answers to the crucial question:

Which areas could health-system stakeholders focus on in order to improve patient-centred

healthcare?

In addition to the scorecard, The Economist Intelligence Unit conducted a survey of patient

organisations in nine countries: Brazil, China, France, Germany, Italy, Japan, Spain, the UK and the US.

The survey investigated how patient values and preferences are captured in policy approaches and

care guidelines for five conditions (see Appendix A for further details):

1. Mental health (with a focus on common mental health disorders, such as mild to moderate

depression and anxiety)

2. Psoriasis

3. Epilepsy

4. Healthy ageing (with a focus on bone health, including osteoporosis, fractures and falls)

5. HIV/AIDS

Terminology and definitionsAlthough some of the underlying elements of a patient-centric approach to healthcare are not new,

for example the relationship between doctor and patient, this approach has become increasingly

prominent in the last two decades.1 The Picker Institute has been credited with originating the term

“patient-centred care” in the 1980s. The eight principles of patient-centred care, as defined by the

Picker Institute, are:

fast access to reliable healthcare advice

effective treatment delivered by trusted professionals

continuity of care and smooth transitions

involvement of, and support for, family and carers

clear, comprehensible information and support for self-care

involvement in decisions and respect for patient’s preferences

emotional support, empathy and respect

attention to physical and environmental needs2



One of the first definitions of patient-centred healthcare was provided in a 2001 report from the US

Institute of Medicine (IOM) that called for a complete overhaul of the health system to bridge the

“quality gap” in healthcare.3 According to the IOM recommendations, healthcare should be safe,

effective, patient-centred, timely, efficient, and equitable, highlighting that patient-centred care is one

of the dimensions of high-quality health care. Patient-centred healthcare was further defined as “Care

that is respectful of and responsive to individual patient preferences, needs, and values and ensuring

that patient values guide all clinical decisions.”3

In a 2016 report for the Sixty-ninth World Health Assembly (A69/39), the World Health Organization

(WHO) introduced the concept of people-centred healthcare, which covers not only clinical

encounters, but also the health of people in their communities and the crucial role of communities in

shaping health policy and healthcare services. It is therefore broader than patient- or person-centred

care. This people-centred concept is defined as:4

An approach to care that consistently adopts individuals’, carers’, families’ and communities’

perspectives as participants in, and beneficiaries of, trusted health systems that are organized

around the comprehensive needs of people rather than individual diseases, and respects social

preferences. People-centred care also requires that patients have the education and support they

need to make decisions and participate in their own care and that carers are able to attain maximal

function within a supportive working environment.

For the purposes of our research programme, we have focused on the narrower meaning of the

concept of patient-centred (rather than people-centred) care. While the WHO definition above

outlines a strategic goal for the future of healthcare, we decided to focus on patient-centricity, as it is

an existing dimension of health systems today. To that end, we have followed the pragmatic definition

set out by the International Association of Patient Organisations (IAPO). They concluded that that

there is no single definition of patient-centred healthcare; however, the most common elements in

existing definitions were “respect for the needs, wants, preferences and values of patients”.1

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THE SCORECARDScorecard methodology We conducted a rapid literature review including health policy documents, academic literature,

and other health system studies. The Economist Intelligence Unit collated and described existing

frameworks, and from this review created a draft framework that was presented to an international

panel of experts for discussion. Based on expert advice, the framework was revised and, after further

consultation with experts, it was finalised by The Economist Intelligence Unit’s research team.

The framework developed for this project (see Appendix B) focuses on the narrower meaning of the

concept of patient- (rather than people-) centred care. It is based on the argument that full adoption

of the patient-centred healthcare model, as opposed to the traditional disease-focused model,

requires a complete overhaul of the health system, as well as empowerment of patients to become

co-creators of their own health. 4, 5 The scorecard framework brings together a set of 11 qualitative

indicators to evaluate the policy environment and the adoption of the principles of patient-centred

care in the countries included in the study. While some of the sub-indicators investigate aspects of the

implementation, the main focus of the benchmarking study is to map the policy landscape for patient-

centred care. (See Appendix C for indicator descriptions and scoring guidelines.)

Scorecard findings Table 1 (below) presents a snapshot of the current situation in each of the countries, based on the

assessment of national policy documents, comparative studies, and published academic papers.

We list in the references some of the key sources for data collection or validation that cover multiple

countries.6-23 The country scores for 11 indicators and corresponding sub-indicators are provided in

Appendix B. In the country comparison matrix view (Table 1) the scores were mapped according to

level of alignment of the country’s health system with the principles of patient-centred care: high,

moderate or low (see Appendix C for mapping schema). A summary of the findings for the four top-

level domains is presented below.

National strategies and policies for patient-centred care have been adopted in all countries,

although fragmented delivery systems hinder implementation

The scorecard results show that all nine countries have a national plan or strategy for patient-

centred care. However, in three countries, this strategy is applicable only for parts of the health

system. These were countries with fragmented care delivery systems—either regional systems, as in

Italy or Spain, or multiple payer and provider systems, such as in the US.

Over the last few decades, patients’ rights have been enshrined in legislation or national policies in

all countries except China and Japan.



National systems and standards for monitoring the implementation of the principles of patient-

centred care are lacking in most of the countries. The UK is the only country with a system in place;

three other countries have standards that are either in development (France) or are not used across

the whole system (Spain and the US).

All countries have taken steps to adopt value-based payment systems to incentivise providers to

implement patient-centred care. However, only four countries have introduced payment systems

for the whole health system (France, Italy, Spain and the UK).

Table 1. Alignment of health systems with the principles of patient-centred careHigh

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 health care 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 health care 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

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Accessibility of care is an issue even in countries with universal healthcare systems, and co-

ordinated and integrated care models are still not the norm

Education and training around the principles of patient-centred care for health professionals as

part of the curriculum is provided in some form in all countries. However, only in three countries

are healthcare professionals suitably supported (i.e. there are schemes to “care for the carers”) to

provide patient-centred care.

In term of access to healthcare, only three of the countries (France, Germany and the UK) attained

the highest possible score based on The Economist Intelligence Unit’s 2017 Global Access to

Healthcare Index. Five countries had moderate scores, while one country—China—had a low score.

All countries have implemented systems or mechanisms for the introduction of innovative health

technologies (e.g. Health Technology Assessment or similar mechanisms for evaluation of innovative

health technologies).

Accessibility of primary care, family doctor or usual doctor services for the vast majority of the

population (>90%) was not an issue in seven countries; only in Brazil and China, regardless of the

existence of universal health systems, was accessibility of primary care an issue.

Equally, the results suggest that, in seven out of the nine countries, it is fairly easy for patients to

make primary/usual care doctor appointments. In Brazil and China, there are multiple barriers to

making primary/usual care appointments.

There was a lack of comparable evidence about how easy it is for patients to navigate the health

system across all countries. This could be partially due to the varying role of primary care across

different health systems.

Only one country, the UK, provides national clinical practice guidelines that recommend co-

ordinated and integrated patient care with multidisciplinary teams for the five selected conditions

in this study. This finding possibly reflects the varying purpose of clinical practice guidelines between

countries.

The transition from disease-focused to patient-centred care models, where patients are

participants in the decision-making process, is slow

There was a lack of evidence for existing national policies or recommendations for providing

personalised care according to patients’ values and preferences. Only one country (UK) had explicit

recommendations for personalised care.

To assess whether healthcare encounters focused on the whole person (i.e. using a holistic approach

to care), we used a proxy measure: the duration of a visit to a primary care or usual care provider.

This measure was used to evaluate whether patients have the opportunity to discuss a range of

health concerns and/or multiple conditions when they visit their primary or usual care physician.

Only two countries, France and the US, achieved the highest possible score for this sub-indicator



and one country, Spain, had a moderate score. The other six countries had shorter visit durations,

suggestive of more disease-focused care models.

The results show that only five countries have national policies for shared decision-making (Brazil,

France, Germany, the UK and the US). Equally, only five countries (France, Germany, Spain, the UK

and the US)—have made an effort to develop decision-making aids.

Only three countries use decision quality measures (DQM) to evaluate the quality of the shared

decision-making processes (Germany, the UK and the US).

Patients and patient groups are involved to some extent in health policy development, but

patient empowerment is not a priority in the majority of the countries

There is lack of data relating to the use of patient-reported outcome measures (PROMs) in routine

practice, and whether existing PROMs are validated by patients. Only one country (the UK) uses

PROMs routinely across the whole health system, and only for a relatively small number of acute

conditions.

Independent, formally established patient organisations with transparent reporting of funding exist

in three countries (France, the UK and the US). In the other six countries, funding sources have not

been transparently reported on the websites of the patient groups that were evaluated.

In all countries but one (China) patients or patient organisations are involved in the development of

healthcare policies at the national level. However, there was a lack of evidence about involvement of

patients or patient advocacy groups in the monitoring activities for policy implementation.

All countries provide reliable health information aimed at the general population; for example, in the

form of national educational campaigns about certain conditions. All countries, with the exception

of China, provide reliable patient information.

However, patient empowerment assessment tools are used by healthcare providers in only two

countries (the UK and the US).

Summary of findings by country

Brazil

The right to health is enshrined in the constitution and there exists a national policy for patient-centred

care. In spite of having a universal healthcare system, Brazil still faces challenges in terms of service

capacity and accessibility. This has a knock-on impact on continuity of care, and the ability of the

system to provide personalised care. While there is a policy for shared decision-making in the country,

implementation is poor.

China

While there is a national strategy for people-centred integrated care in China, it has not been

translated into guideline recommendations for clinical practice. There is neither a bill of patients’ rights,

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nor other policies for the building blocks of patient-centred care, such as shared-decision making.

Access to healthcare in general, and to primary care in particular, is still a challenge. Patient and public

participation in healthcare policy development is in its early stages.

France

The enabling policy environment for patient-centred care in France is strong. Education and support

for staff are priorities, and access to care services is on a par with the best health systems in the world.

However, continuity and co-ordination of care could be strengthened. While there is a national policy

for shared decision-making, and patient and public participation in policy development is good,

patient empowerment could be improved.

Germany

Patient-centeredness in the German health system is enshrined in law and is a priority area for

research. While access to care services is among the best in the world, provider incentivisation and

translating national policies into clinical recommendations offer room for improvement. There is a

national policy for shared decision-making, and patients and the general public are involved in policy

development. Patient empowerment, care continuity and co-ordination could be improved.

Italy

Legislation relating to patients’ rights exists, although there is no national policy for patient-centred

care. While access to care services is generally not an issue, there are regional variations. Italy struggles

to translate national policies into clinical recommendations, and also lacks policy on personalised

care and shared decision-making, although some initiatives exist. Patients and the general public are

involved in policy development, but more needs to be done for patient empowerment.

Japan

A national policy for patient-centred care exists in Japan, but there is no official statement or bill

of patients’ rights. While access to care is good, and it is fairly easy to make doctors’ appointments,

provision of co-ordinated and integrated care is not supported at policy level. Personalised care or

shared decision-making are also not promoted at policy level, so the adoption of a patient-centred

care approach is slow compared to that of peers.

Spain

There is no overarching national policy for patient-centred healthcare in Spain, although there is a

policy for primary care. The rights of users of the national health system are guaranteed, and some

autonomous regions extend these even further. Patient-centeredness of primary care services is

evaluated, and value-based payments are used. Accessibility is good, although neither the provision of

co-ordinated and integrated care nor shared-decision making is supported by national policy.



UK

The enabling policy environment for patient-centred care in the UK is strong. Access to care is among

the best in the world, and policies are translated into clinical recommendations. Nevertheless,

continuity of care could be improved. There is a national policy for shared decision-making and tools

for its implementation exist. Patient and public participation in policy development is good, although

it could be improved by including patients in monitoring implementation.

US

A patients’ bill of rights exists in the US, as do numerous policies for patient-centred care. However,

given the fragmented healthcare system, these policies are not applicable to all providers. Challenges

with access impact on the continuity and co-ordination of care. Shared decision-making policies are

implemented and evaluated, and patient empowerment tools are used. Patients and the general

public are involved in policy development, although policies vary across payers and providers.

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THE SURVEYSurvey methodologyThe survey covers the themes deemed critical to patient-centred care, as identified by the literature

review and from the discussions held by the advisory board. It was designed to identify heterogeneity

between health conditions and across countries.

To do this, the survey aims primarily to target representatives of five patient advocacy organisations

for each country (one organisation for each therapy area) and focuses on critical domains that

are important to patient advocacy groups (as described below). In some countries where patient

organisations were not identified, the survey targeted patient groups which exist within broader

organisations or alliances that include other stakeholders, such as health care professionals or

researchers.

Section A of the survey included questions exactly matching the indicators used for the scorecard

assessment. The analysis was conducted by country. For each indicator in part A, we use a simple

binary system where the respondent is scored 1 if he has replied “Yes”, and 0 if he has replied “No”.

We weight these scores by indicator, and then add them up to get a score for the overall domain. We

calculate this as a percentage of the maximum score achievable to assess how survey respondents

perceive the progress of that indicator for that country. We repeat this process across the four key

domains and relevant indicators that compose the framework for the scorecard.

In section B we analysed five domains of patient-centred care through the lenses of country and

therapy area. The five domains are:

Domain 1: Patient experience

Domain 2: Shared decision-making

Domain 3: Inclusiveness and support

Domain 4: Outcomes that matter to patients

Domain 5: Technology

The final question then asks respondents to prioritise which of the five domains are more important to

the patients their organisation represents.

Section C of the survey consisted of questions relating to the experiences of patients, the tools used to

monitor patient-centred care, and the perception of patient-centred care in each country.

Each critical domain has smaller ‘probe’ sub-themes/questions, which offer a more granular gauge of

the patients’ views. The survey questionnaire is provided in Appendix E.



Survey findingsWe split our analysis into three sections: A, B, and C. The method of analysis varies slightly in each

section (described below).

For the majority of the countries, there was a discrepancy between the findings of the scorecard and

the results of the survey study. The findings were similar for more than half of the 11 indicators in

two countries, the US (n=7) and France (n=6); otherwise, the findings were quite diverse. This is not

surprising, considering the ambiguity of terminology around this topic and the different perspectives

of various stakeholders in the healthcare ecosystem.

The direction of divergence is perhaps more interesting. In countries such as Brazil, China and Japan,

survey respondents agreed for all indicators that the health systems in their countries were more

patient-centric compared with the findings from the secondary research. The reasons for this are

different in the different countries. In China, for example, over the last couple of decades there have

been so many healthcare reforms focused on patient-centricity that respondents may think that

patient-centred care is a reality. However, as patient organisations have only started to emerge fairly

recently, some of the survey respondents belong to organisations with a mixed membership and may

represent the views of health professionals.

In countries such as France and the UK, with a long history of patient advocacy, patients tend to be

more demanding and critical about the challenges to the implementation of patient-centred care

approaches on the ground.

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Brazil China France Germany Italy Japan Spain UK US

Domain # Indicator

Strategy

1.1 Strategic plan and patients’ bill of rights H H ↔ M H ↑ H M ↓ H H ↔ M H ↑ M H ↑ M H ↑ H H ↔ M H ↑

1.2Monitoring and evaluation of patient-centred care implementation

L M ↑ L M ↑ M M ↔ L H ↑ L H ↑ L H ↑ M M ↔ H H ↔ M M ↔

1.3

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

M M ↔ M M ↔ H L ↓ M L ↓ H M ↓ M H ↑ H L ↓ H M ↓ M H ↑

Provision

2.1 Education and support for health care staff M M ↔ M H ↑ H M ↓ M H ↑ M H ↑ L H ↑ H M ↓ H H ↔ M H ↑

2.2 Continuity of care L H ↑ L H ↑ M M ↔ M H ↑ M M ↔ M H ↑ M H ↑ H M ↓ M M ↔

2.3 Patient access to health care M M ↔ L H ↑ H H ↔ H M ↓ M H ↑ M H ↑ M H ↑ H M ↓ M M ↔

Delivery

3.1Personalised care according to patients’ values and preferences

L H ↑ L H ↑ M L ↓ L H ↑ L M ↑ L H ↑ L H ↑ L L ↔ M M ↔

3.2 Patient involvement in shared decision-making L L ↔ L H ↑ H L ↓ H H ↔ L H ↑ L M ↑ M H ↑ H M ↓ H H ↔

Patients

4.1 Use of patient-reported outcome measures (PROMs) L M ↑ L L ↔ L L ↔ L H ↑ L L ↔ L L ↔ L L ↔ M L ↓ L L ↔

4.2 Patient advocacy groups M H ↑ L H ↑ H H ↔ M H ↑ M M ↔ M H ↑ M M ↔ H H ↔ H H ↔

4.3 Patient empowerment M H ↑ L M ↑ M M ↔ M M ↔ M H ↑ M H ↑ M M ↔ H M ↓ H M ↓

Key: H High alignment with principles of patient-centred careM Moderate alignment with principles of patient-centred careL Low alignment with principles of patient-centred care↑ Patients perceive practice to be better than official statement of position↔ Patients perceive practice to be same as official statement of position↓ Patients perceive practice to be worse than official statement of position

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Table 2. Comparison between the scorecard assessment and survey results

Section A: Comparison between the scorecard and survey results



Section B: The importance of different dimensions of patient-centred care

Domain 1: Patient experience Results split by country

Figure 1 presents the results by country for the patient experience domain, focusing on six specific

factors. The figure in each bar graph represents the number of respondents who answered ‘yes’ to that

question.

Twenty-seven out of 45 respondents believed that “well organised referral and admissions processes”

are important to patients. Out of the patient organisations that supported this statement, the highest

levels of agreement were from Spain, followed by China and Italy.

The other two important factors in this domain, with just barely over half of the responses (23 out of

45), are that “patients are treated with courtesy and respect at all stages of the admission process” and

that “scheduled tests are performed on time”.

Figure 1. Most important factors in the patient experience domain, split by country

Scheduled tests are performed on time

Patients feel they have sucient time withcare professional (e.g. to explain test results)

Patient does not have to wait a long time tosee the care professional they need

Patient is treated with courtesy and respectat all stages of the admission process

Care professionals are interestedin what the patient has to say

Well-organised admission and referral process


Patients feel they have sucient time withcare professional (e.g. to explain test results)

Patient does not have to wait a long time tosee the care professional they need



Well-organised admission and referral process 27

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Brazil China France Germany Italy

Spain UK US Total (All Countries)Japan

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Results split by therapy area

Across therapy areas, 27 out of 45 respondents believed that well organized referral and admissions

processes are important to patients. Out of the patient organizations that supported this statement,

the highest levels of agreement came from epilepsy, HIV/AIDS and psoriasis.

When split by disease area, certain nuances can be observed; for example, for people with epilepsy

or mental health issues, it is more important than for patients with other conditions that care

professionals are interested in what they have to say.

Patient advocates in psoriasis valued patients being treated with respect throughout the care

process, and patient advocates for HIV/AIDS and osteoporosis value timely testing. Different factors

determining convenient care are likely directly dependent on the type of disease, as seen in Figure 2

below.

Domain 2: Shared decision-makingResults split by country

Figure 3 presents the responses about the opportunities for patients to participate in genuine shared

decision-making, split by country, with the focus on six distinct factors.

Across countries, the most important aspects of shared decision-making for patients were full

disclosure of the side effects of treatments (34 out of 45 respondents) and participation of family or

friends in discussions with healthcare professionals (30 out of 45).

Somewhat surprisingly, very few respondents (7 out of 45) thought that being allowed to review

doctors’ notes and/or lab results would significantly impact this domain, with zero votes from Brazil,

China, Germany and Spain.


Figure 4 below presents the results by therapy area for the shared decision-making domain, focusing

on the six specific factors.

Figure 2. Most important factors in the patient experience domain, split by therapy areaPsoriasis Mental Health Epilepsy Osteoporosis HIV/AIDS Total


Patients feel they have su�cient time withcare professional (e.g. to explain test results)

Patient does not have to wait a long timeto see the care professional they need



Well-organised admissionand referral process 27

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Among these six patient factors, patients across all therapy areas seemed to believe that the most

important aspect of transparent relationships between patients and providers was ensuring that

patients were fully aware of the side-effects of their treatment (7 or 8 out of 9 respondents from

epilepsy, HIV/AIDS, osteoporosis and psoriasis organisations).

Most respondents also seemed to value significantly the ability of family and friends to participate in

discussions with care professionals—this was the second-most important factor among the six, with 4

out of 5 therapy areas voting this as one of the top two most important factors in shared decision-making.

Figure 3. Most important factors in the shared decision-making domain, split by country

High-quality information ( in multiple formats)is o�ered to patients

Patients are allowed to review doctors’notes and/or lab results

Family/friends can participate in discussionswith care professionals

Patients are fully informed aboutside-e�ects of treatment

Patients are invited to be a partner indecision-making about their care options

Patients are provided with options for care

High-quality information ( in multiple formats)is o�ered to patients



Patients are fully informed aboutside-e�ects of treatment


Patients are provided with options for care 23

19

34

30

7

22


Spain UK US Total (All Countries)Japan

3 2 4 2 4

2 1 2 3 2

4 4 4 4 4

4

0 0 0

4 1

2 2

5 4

3 4 2 1 1

3

3

4

3

1

1

2

3

2

5

0

3

2

3

4

2

1

3

1

3

4

2

1

4

Figure 4. Most important factors in the shared decision-making domain, split by therapy areaMental Health Epilepsy Osteoporosis HIV/AIDSPsoriasis Total

High-quality information(in multiple formats) is oered to patients



Patients are fully informed aboutside-eects of treatment



19

34

30

7

22

5

8

7

4

0

3

5

4

5

7

1

5

4

2

8

7

1

5

5

3

7

5

2

5

4

2

7

7

3

4

18



Domain 3: Inclusiveness and supportResults split by country

Figure 5 provides the results by country for a range of questions addressing how inclusive and

supportive care providers are.

Patients’ mobility concerns and multimorbidity are the two most important factors in this category,

with 34 and 28 responses, respectively (out of 45). Patients’ possible membership of a vulnerable group

was deemed of higher importance in Brazil, France and the US than in the rest of the countries.


Figure 6 (below) presents the results by therapy area for the inclusiveness and support domain,

focusing on the six specific factors.

In terms of therapy areas, some distinctions in terms of preferences can be made between the

different diseases. Considering patients’ mobility concerns is important for all therapy areas.

Taking multimorbidity into account was the single most important factor for epilepsy organisation

representatives. Respondents from HIV/AIDS and mental health organisations think that care

Figure 5. Most important factors in the inclusiveness and support domain, split by country

Care providers take into account a patient’spossible membership of a vulnerable

population, due to age, cognitiveimpairment, ethnicity or socio-economic

dimensions

Care providers take patients’multimorbidity into account

Translation service is o�ered at point of care

Information is available in mainapplicable languages

Patients’ mobility concerns are taken intoaccount when determining care options

Cultural di�erences are respectedthroughout the care process

Total (All Countries)

Care providers take into account a patient’spossible membership of a vulnerable

population, due to age, cognitiveimpairment, ethnicity or socio-economic

dimensions




Patients’ mobility concerns are taken intoaccount when determining care options

Cultural di�erences are respectedthroughout the care process 16

34

17

16

28

24


Spain UK USJapan

3 1 2 2

5 4 4

2 1 2

2 4 3

4

3

1 3 4

4

2 4 1 2

3

0

0

0

2

3

4

1 1 3 3

2 2

3 2

3 4

5

2

1 1

3

3 2 3

5

2

22

2

3



providers taking into account patient’s membership of a vulnerable population is one of the two most

important factors in this category.

Domain 4: Outcomes that matter to patientsResults split by country

Figure 7 presents the results related to outcomes that matter to patients.

Figure 6. Most important factors in the inclusiveness and support domain, split by therapy area

Total

Care providers take into account a patient’s possiblemembership of a vulnerable population, due to age,

cognitive impairment, ethnicity or socio-economicdimensions




Patients’ mobility concerns are taken into accountwhen determining care options

Cultural di�erences are respectedthroughout the care process 16

34

17

16

28

24

Psoriasis Mental Health Epilepsy Osteoporosis HIV/AIDS

3

7

7

4

4

2

6

6

2

3

4

6

2

7

4

2

8

4

2

7

2

5

6

5

3

7

2

2

6

7

Figure 7. Most important factors in the outcomes that matter to patients domain, split by country

Care professionals use validated patient reportedoutcome measures whenever possible

Care professionals are interested in howa condition impacts patients’ lives

Patients feel that their emotionalneeds are being addressed

Patients are given advice aboutremaining healthy in future

Patients have a say in the outcomes usedto measure e�ectiveness of treatment

Patients are o�ered advice onprevention as well as cure


Care professionals use validated patient reportedoutcome measures whenever possible

Care professionals are interested in howa condition impacts patients’ lives



Patients have a say in the outcomes usedto measure e�ectiveness of treatment

Patients are o�ered advice onprevention as well as cure 34

15

28

17

22

19


Spain UK USJapan

3

1

5

2

2

2

4

3

1

2

2

3

4

2

3

1

2

3

4

2

4

0

3

2

1

1

2

4

3

4

4

1

4

2

3

1

5

3

2

1

3

1

4

0

4

5

1

1

5

2

3

0

3

2

20



Overall, patient organisations seemed to think that the most important outcome for patients was that

they would be provided with advice on prevention as well as cure. The second-most important factor

was that patients were given advice on how to stay healthy. Both these factors are related to how

patients can monitor their health prospectively and not just retrospectively.


The results by therapy area for the patient outcomes domain are provided in Figure 8, with focus on

six specific factors.

As among countries, there is variation among therapy areas. Advice on prevention as well as treatment

is the most important factor for respondents from psoriasis, epilepsy and (jointly) HIV/AIDs and

osteoporosis organisations. For respondents from mental health organisations, the most important

factor was that care professional are interested in how a condition impacts on patients’ lives.

Domain 5: TechnologyThe technology domain includes any type of digital or information and communication technologies

used in healthcare.

Results split by country

Figure 9 presents the results by country for the use of digital technology to improve accessibility and

convenience of care.

Overall, respondents seemed to value the idea that patients could schedule their appointments

online (36 out of 45 responses). This was closely followed by the potential for patients to communicate

directly with their care providers through SMS, phone or email (35 responses). These results are hardly

surprising, as effective communication is sine qua non for the existence of patient-centred care.


The results by therapy area for the digital technology domain focusing on six specific factors are

presented in Figure 10 below.

Figure 8. Most important factors in the outcomes that matter to patients domain, split by therapy areaTotal

Care professionals use validatedpatient reported outcome measures

whenever possible

Care professionals are interested in how acondition impacts patients’ lives



Patients have a say in the outcomes used tomeasure e�ectiveness of treatment

Patients are o�ered advice onprevention as well as cure 34

15

28

17

22

19

Mental Health Epilepsy Osteoporosis HIV/AIDSPsoriasis

9

3

6

4

4

1

5

4

5

2

6

5

8

2

5

4

5

3

5

3

5

4

5

5

7

3

7

3

2

5



The therapy areas also show subtle variations, with direct communication with care providers being of

utmost importance for respondents from HIV/AIDS, psoriasis, and osteoporosis organisations in 8 out

of 9 countries, while the ability to schedule appointments online was most valued by respondents from

epilepsy and osteoporosis organisations in 8 out of 9 countries.

Most important domainsIn the previous sections, the most important factors within the five domains listed were explored. We

also investigated which two domains of care are the most important for patients:

Figure 9. Most important factors in the technology domain, split by country

Care providers o�er technologicalsolutions for tracking health

Patients can access/carry their ownmedical records electronically

Patients can scheduleappointments online

Patients can access care viaonline/video consultations

Patients can communicate directly (phone,email and/or SMS) with their care providers

Patients can share their health data withproviders from their own wearables


Care providers o�er technologicalsolutions for tracking health

Patients can access/carry their ownmedical records electronically

Patients can scheduleappointments online

Patients can access care viaonline/video consultations


Patients can share their health data withproviders from their own wearables 9

35

18

36

19

18


Spain UK USJapan

3

0

3

3

2

4

0

5

2

4

2

2

0

5

2

4

3

1

1

4

2

5

2

1

1

4

0

5

2

3

0

4

4

5

1

1

3

3

1

2

3

3

1

5

1

4

3

1

0

5

3

4

1

2

Figure 10. Most important factors in the technology domain, split by therapy area

Total

Care providers o�er technological solutionsfor tracking health

Patients can access/carry their own medicalrecords electronically

Patients can schedule appointments online

Patients can access care via online/videoconsultations


Patients can share their health data withproviders from their own wearables 9

35

18

36

19

18

Psoriasis Mental Health Epilepsy Osteoporosis HIV/AIDS

1

8

6

7

2

3

3

5

2

6

4

7

3

6

3

8

4

3

2

8

2

8

4

3

0

8

5

7

5

2

22



Patient experience

Shared decision-making

Inclusiveness and support

Outcomes that matter to patients

Technology

Results split by country

Results by country are presented in Figure 11 below.

It should be noted that the total number of responses for the most important domain is 88, as one

respondent did not complete the required fields. Both first and second choices were counted with

equal weighting.

Overall, the two most important domains for care are outcomes that matter to patients (28 out of 44

responses), followed by patient experience (19 responses). In some countries e.g. Brazil, Italy and Japan,

these two domains were in reverse order.

This is not surprising, as transforming health systems to focus on outcomes that matter for patients

is the ultimate purpose behind the concept of patient-centred care. Some of the other dimensions

Figure 11. Most important domains, split by countryBrazil China France Germany Italy

Japan Spain UK US

Technology to improve accessibilityand convenience



Shared-decision making

Patient experience


Technology to improve accessibilityand convenience




Patient experience

3

0

4

3

2

1

2

2

1

4

0

4

1

4

2

0

3

1

1

2

2

4

1

4

4

0

2

2

2

3

3

1

2

1

1

3

5

0

2

1

1

4

0

0

0

19

12

17

28

12



can be viewed as the means to achieve this goal, for example the use of digital technology to improve

accessibility and convenience of care.


Figure 12 below presents the results by therapy area, highlighting the two most important domains

of care.

When comparing the results by therapy area, two major trends emerge. For organisations representing

patients with epilepsy, HIV/AIDS, mental health problems, and osteoporosis the most important

domain is “outcomes that matter to patients”. For psoriasis organisations, the inclusiveness and

support domain is the most important one (perhaps not unexpectedly, as there is persistent stigma

associated with this condition), followed by patient experience and use of digital technology.

Figure 12. Most important domains, split by therapy area

Total

Technology to improve accessibility and convenience





12

17

28

12

Mental Health Epilepsy Osteoporosis HIV/AIDSPsoriasis

3

3

8

3

1

5

3

5

3

2

4

3

7

2

2

3

2

6

4

3

4

1

2

5

4

24



Section C: Patient experience and perception of patient-centred careSection C of the survey consisted of questions relating to the experience of patients, the tools used to

monitor patient-centred care, and the perception of patient-centred care in each country.

Question 11

Q11 covered four related queries around patients’ experience of care and their ability to shape

their care plans. The values in the graph indicate the percentage of respondents who selected each

statement, split by country.

Germany and UK perform well on this question, Japan least well. For chronic conditions it is important

that patients have a voice in their health plan and that their values and priorities are heard and noted.

It is significant that most health systems could do a lot better in this regard. There’s also quite a spread

for all countries, suggesting that individual patient experiences tend to vary.

60

60

60

80

20

20

40

60

0

Brazil

China

France

Germany

Italy

Japan

Spain

UK

US

(% respondents)Q11.1 – Patients are involved in the creation of their care plan, and throughout the care process

20

2020

2020

40

20

2060

202040

40 20

40

6020

Don’t know Not at all Not very well Reasonably well Very well



The responses suggest that most health systems make at least some effort to ensure that patients can

maintain their own health between appointments. Ensuring that patients are self-sufficient, where

possible, helps build resilient systems. Brazil performs the worst, although even here there was one

respondent who suggested that the system performed “very well” in this regard.

Support for emotional and social care appears to be lacking, or at least insufficiently prioritised by

national health policies, in a number of countries. Without such joined-up thinking, patients can easily

fall through the gaps between services. The US and, perhaps surprisingly China, perform reasonably

well. France and Italy are among the worst performers, with Brazil and the UK not far behind.

6040

8020

404020

20

20

20

80

60

60

20

20

40

40

40

40

20

20

Brazil

China

France

Germany

Italy

Japan

Spain

UK

US

20204020

(% respondents)

Q11.2 – Health services are designed to address patients’ clinical needs and support them tomaintain their own health and wellbeing between clinical appointments


602020

402040

6040

206020

6040

206020

2060 20

6040

0

Brazil

China

France

Germany

Italy

Japan

Spain

UK

US

204040

(% respondents)

Q11.3 – Health policy mandates that clinical, emotional and social support are allprovided to patients


26



Respondents from the US, Spain and China report that national health systems can help patients with

chronic conditions to manage their own health. France and Italy perform poorly, with the UK not far

behind. As with other questions in this section, self-reliance in care is important, both to the patient

and to the sustainability of the healthcare system.

80

20

80

20

20

60

20

60

Brazil

China

France

Germany

Italy

Japan

Spain

UK

US

80

20

402020

20

204020

6020

40

2060

2020

20

(% respondents)

Q11.4 – People with long-term conditions are enabled to manage their own health in theirday-to-day lives




Germany and Italy appear to use the widest range of tools to monitor the application of patient-centred

care, while Brazil and France prop up the bottom of the list. The findings from this question clearly

show the diversity of tools and processes (sometimes) used to monitor implementation, and that,

therefore, there seems to be no clear consensus over what constitutes best practice. Nevertheless, the

diversity of approaches within the same healthcare system may allow the opportunity to triangulate

data from a range of sources. The processes most commonly used to measure implementation include:

patient feedback, provider training, and surveys of patients and providers.

Question 13

The representatives of organisations who responded to the survey were also asked to describe the

best practices they have observed in their country with regard to the application or monitoring of

patient-centred care. These were free text responses used to aid research for the white paper “Creating

healthy partnerships: The role of patient value and patient-centred care in health systems” and are not

reported here.

Q12 – Tools used by care services to monitor the application of patient-centred careBrazil China France Germany Italy Japan Spain UK US

Patients are asked to submit formal feedback to care providers via

regular (e.g. quarterly) questionnaires40% 40% 20% 80% 80% 20% 20% 60% 80%

All care providers are required to attend regular training on patient-

centred care initiatives 20% 60% 20% 80% 100% 20% 40% 60% 60%

Care providers are incentivized to collect feedback from patients 40% 60% 20% 0% 20% 60% 20% 40% 40%

Patients are incentivized to provide feedback to care providers 20% 20% 0% 20% 0% 20% 60% 20% 20%

Patient focus groups are arranged by care providers to discuss

patient-centred care initiatives 20% 80% 0% 60% 100% 40% 40% 40% 60%

Care providers are regularly surveyed by administrators and/or

policymakers on the effectiveness of patient-centred care initiatives 0% 100% 20% 100% 80% 80% 40% 60% 40%

Patients are regularly surveyed by administrators and/or

policymakers on the effectiveness of patient-centred care initiatives 0% 40% 40% 100% 40% 40% 40% 40% 80%

Patients are informally asked for feedback by care providers 20% 20% 20% 0% 0% 0% 60% 60% 40%

28



DISCUSSION AND LIMITATIONSThe study offers a simplified view of the complex landscape of patient-centred care, based on a

number of qualitative indicators deemed the most representative across selected topics. Selection was

informed by an examination of the literature and consultation with experts. The Economist Intelligence

Unit’s white paper “Creating healthy partnerships: The role of patient value and patient-centred care

in health systems” discusses these results in the context of wider research in patient-centred care. We

describe briefly here some conclusions from the research and the study limitations.

Discussion

The scorecard findings show that national strategies and policies for patient-centred care have been

adopted to some extent in all countries. However, the crucial question is how to implement these

policies, especially in countries with fragmented delivery systems. For example, accessibility of care

remains an issue, even in countries with universal healthcare systems, while the reorganisation of

care provision into co-ordinated and integrated care models has, so far, proven to be a very difficult

task, even in the countries with best policies in place. The transition from disease-focused to patient-

centred care models, where patients are participants in the decision-making process, has just begun.

While patients and patient groups are involved to some extent in health policy development, patient

empowerment is not a priority in most of the countries.

There were several discrepancies between the findings of the scorecard and the results from the

survey. This is not surprising considering the ambiguity of terminology around this topic and the

different perspectives of various stakeholders in the healthcare ecosystem.

The findings from the survey of patient groups provides some insight into the future efforts to

make health systems more patient-centric. Overall, the two most important domains for care are

outcomes that matter to patients, followed by patient experience. This focus on outcomes should

not be surprising, as transforming health systems to focus on outcomes that matter for patients is

the ultimate purpose behind the concept of patient-centred care. Some of the other dimensions can

be viewed as the means to achieve this goal, for example the use of digital technology to improve

accessibility and convenience of care.

In terms of patient experience, well organised referral and admissions processes, being treated with

courtesy and respect at all stages, and timely tests are all important parts of the patients’ experience.

Patients groups across all therapy areas rated highly the need for patients to be fully aware of the side

effects of their treatment. Respondents also significantly valued the opportunity for family and friends

to participate in discussions with care professionals.

Other important matters that emerged from the survey were that providers take into account patients’

mobility concerns and multimorbidity, as well as providing advice on prevention as well as cure. Patient

groups also rated highly the need for providers to help patients improve their self-sufficiency and how

to stay healthy.



Perhaps surprisingly, shared decision-making was not a particularly high priority, except in the UK.

This may reflect, as noted above, the fact that the idea of shared decision-making is relatively new in

many health systems. Or, it may be that patient groups do not think that the patients they represent

necessarily want the burden of being involved in decisions about their treatment. It may be that, as

long as they are listened to and have an opportunity to express what is important to them, then they

are often happy to take the advice of a health specialist.

Finally, the use of digital technology was bottom of the list of priorities emerging from the survey.

However, when it is used, its most important contribution is its facilitation of clinical encounters and

communication with care providers.

Study limitations

Some of the scorecard indicators we have used are based on the examination of national policies and

plans. These should be interpreted as an aspiration or statement of action from the government and

not as a measure of effectiveness or quality of implementation of programmes or objectives.

Data collection for the scorecard was based on secondary research. The searches for government

policies, health policy reports and published studies were conducted in English only, so some relevant

documents could have been omitted. To provide a more nuanced picture of the local situation, we

conducted a survey of patient organisations for five selected disease areas in each of the countries

included in this study.

As patient advocacy groups have started to emerge only fairly recently in some countries, it proved

difficult to identify independent, formally established patient organisations for all therapy areas. In

these cases, the survey targeted patient groups within broader organisations or alliances that include

other stakeholders, such as healthcare professionals or researchers. Therefore, some of the survey

responses may represent the views of health professionals, rather than patients. Moreover, the

respondents from patient organisations do not necessarily have first-hand experience of living with

certain conditions, which may further influence the results.

30



APPENDIX A: SELECTION OF THERAPY AREAS FOR SURVEYThe survey is designed to provide insight into how values and preferences vary by geography and

health condition. Many concerns are likely to be similar for patients living with different health

conditions, such as being able to access help when needed. However, some concerns, such as the

ability to drive, or freedom from stigma, may be pertinent to particular conditions.

To choose which health conditions to focus on, we initially looked at World Health Assembly (WHA)

resolutions from the last five years (see table below). The WHA is the WHO’s supreme decision-making

body, and during their annual meeting the members agree on resolutions on key health issues to direct

Member States and to request the WHO Director General to undertake particular actions related to

these health issues. We have split resolutions into those that address 1) broad health themes, 2) specific

non-communicable diseases (NCDs), and 3) specific communicable diseases.

Based on the following criteria, we selected the areas marked in red for our health conditions focus:

1. A role for shared decision-making: We selected conditions that are chronic in nature, where

quality of life is paramount, and that have complex therapy needs with trade-offs in treatment;

i.e. conditions in which patients would expect to have their preferences and values heard.

2. Breadth of therapy area: Conditions from across a range of therapy areas. We chose not to

include cancer and cardiovascular diseases, as these are already relatively well studied. We took

two from the broad themes, two NCDs and one communicable disease (HIV/AIDS, a chronic

condition with a number of related co-morbidities).

3. Burden: It’s important that the condition is at least relatively common, as we need to ensure

that we will be able to find suitable patient advocacy groups across all the countries of the

research. We focused on conditions relevant to high- and middle-income countries.

4. Suggested inequitable access: Conditions in which some patients have inequitable access are

more likely to have patient advocacy groups with a strong voice.

5. Suggested neglected condition: As with access, neglected conditions will offer us the

opportunity to speak with active patient advocacy groups. WHA resolutions tend to focus on

what are often considered neglected conditions.

6. Other considerations relevant to the project: We also considered other factors, such as the

impact of conditions on other people (e.g. carers), how the condition is perceived, whether there

is stigma attached, if the condition affects particular population groups (the elderly, women,

etc.), and whether there is a history of strong patient advocacy in the health condition area.



WHA resolutions on specific health conditions from the last five years

In the case of mental health and healthy ageing—two broad themes within healthcare—it was

necessary to choose a further focus in order to guide our search for patient advocacy groups. In

relation to mental health, we decided to focus on common conditions such as depression and

anxiety. These two conditions are burdensome and provide similar challenges, including having them

acknowledged by the medical profession and the array of choices in relation to treatment options

(choice of antidepressant and drug vs talking therapies). For healthy ageing, we decided to focus on

bone health, including osteoporosis, fractures and falls. Again, these conditions result in a large burden

on patients, which is added to by challenges around the identification and acknowledgement of the

condition, and low adherence to medication.

1. Mental health (with a focus on common mental health disorders, such as mild to moderate

depression and anxiety)

2. Psoriasis

3. Epilepsy

4. Healthy ageing (with a focus on bone health, including osteoporosis, fractures and falls)

5. HIV/AIDS

WHA Year Broad themes NCDs Communicable diseases

65 2012 Mental health

Child nutrition

Schistosomiasis

Poliomyelitis

66 2013 Eye health

Mental healthNeglected tropical diseases

67 2014 Palliative care Psoriasis

Autism (ASD)

Viral Hepatitis

Tuberculosis

68 2015 Surgery and emergency care Epilepsy Malaria

Poliomyelitis

Yellow Fever

Ebola

Dengue

69 2016 Healthy ageing

Women’s children’s and adolescent’s health

Interpersonal violence

Childhood obesity Mycetoma

HIV/AIDS, Hepatitis C, sexually transmitted infections (STIs)

32



APPENDIX B: SCORECARD FRAMEWORK AND DETAILED INDICATOR DESCRIPTIONSIndicator framework

Domain # Indicator name Sub-indicator

Strategy 1.1 Strategic plan and patients' bill of rights National strategy for patient-centred care

Bill/statement of patients' rights

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

No sub-indicators

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

No sub-indicators

Provision 2.1 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

Support of health professionals in service settings

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

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

Ease of scheduling doctors' appointments

Ease of navigation of health services

2.3 Patient access to healthcare Access to healthcare

Access to innovations in healthcare

Delivery 3.1 Personalised care according to patients' values and preferences

Personalised approach to patient care

Holistic approach to patient care taking account of co-morbidities

3.2 Patient involvement in shared decision-making

National policies for shared decision-making

Patient aids for shared decision-making

Patients' right to access their own health record

Use of decision quality measures (DQM)

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

Use of PROMs in routine care

Patient validation of PROMs

4.2 Patient advocacy groups Existence of independent patient organisations with transparent funding

Patient/patient organisations involvement in policy development (e.g. national plans/strategies/HTA)

Patient/patient organisations involvement in monitoring activities for policy implementation (e.g. national plans/strategies/HTA)

4.3 Patient empowerment Availability of reliable patient information (targeted at patients)

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

Use of patient empowerment assessment tools by healthcare providers



Detailed indicator definitions and scoring guidelines

Domain 1: Strategy

1.1 Strategic plan and patients’ bill of rights (0-3)

This indicator comprises two sub-indicators.

1.1.1 National strategy for patient-centred care

Scoring guidelines:

0 = No/Not reported

1 = National strategy for patient-centred care is in development or covers only some parts of the

health system

2 = National strategy for patient-centred care exists for the entire heath system

Source: The Economist Intelligence Unit

Methodology: Desk research

1.1.2 Bill/Statement of patients’ rights

Scoring guidelines:

0 = No/Not reported

1 = Bill/Statement of patients’ rights exists



1.2 National quality standards for monitoring the implementation of patient-centred care (0-2)

Scoring guidelines:

0 = No/Not reported

1 = National quality standards are in development or used only for part of the health system

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



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

centred care (0-2)

Scoring guidelines:

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

34



2 = Value-based payment systems are used as provider incentives for the implementation of patient-

centred care across the whole health system



Domain 2: Provision

2.1 Education and support for healthcare staff (0-2)


2.1.1 Education and training around the principles of patient-centred care for health

professionals as part of the curriculum in medical/nursing schools

Scoring guidelines:

0 = No/Not reported

1 = Education and training around the principles of patient-centred care for health professionals as

part of the curriculum



2.1.2 Support of health professionals in service settings

Scoring guidelines:

0 = No/Not reported

1 = There is support for health professionals in service settings



2.2 Continuity of care (0-4)

This indicator comprises four sub-indicators.

2.2.1 Existence of national clinical practice guidelines recommending co-ordinated and

integrated patient care with multidisciplinary teams (selected conditions)

Scoring guidelines:

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





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

Scoring guidelines:

0 = Proportion of the population with no access to primary care, family doctor or usual doctor (≥ 10%)

1 = Primary care, family doctor or usual doctor services are accessible for ≥ 90% of the population



Based on the WHO definition of universal health coverage (UHC), the goal of UHC is “to ensure that

all people obtain the health services they need without suffering financial hardship when paying for

them”. http://www.who.int/features/qa/universal_health_coverage/en/

2.2.3 Ease of scheduling doctors’ appointments

Scoring guidelines:

0 = It is not easy to schedule primary or usual care doctor’s appointments

1 = It is easy to schedule primary or usual care doctor’s appointments



2.2.4 Ease of navigation of health services

Scoring guidelines:

0 = It is not easy to navigate secondary/tertiary services

1 = It is easy to navigate secondary/tertiary services



2.3 Patient access to healthcare


2.3.1 Access to healthcare

Scoring guidelines:

Based on The Economist Intelligence Unit’s 2017 Global Access to Healthcare Index country score

0 = Having a score of < 7.5

1 = Having a score of ≥ 7.5 and ≤ 8.4

2 = Having a score of ≥ 8.5


Methodology: The Economist Intelligence Unit’s 2017 Global Access to Healthcare Index

36



The Economist Intelligence Unit’s Global Access to Healthcare Index ranked 60 countries across the

world in terms of access to healthcare. The highest score ≥ 8.5 out of 10 is equivalent to the six top-

performing countries in the global index; the moderate score of ≥ 7.5 is equivalent to countries with

mature health systems; while a lower score reflects some gaps in the coverage by appropriate health

services. (http://accesstohealthcare.eiu.com/)

2.3.2 Access to innovations in healthcare

Scoring guidelines:

0 = There are no mechanisms for introduction of innovative health technologies in the country (e.g.

Health Technology Assessment or similar mechanisms for evaluation of health technologies)

1 = Existing mechanisms for introduction of innovative health technologies in the country (e.g. Health

Technology Assessment or similar mechanisms for evaluation of health technologies)



Domain 3: Delivery

3.1 Personalised care according to patients’ values and preferences


3.1.1 Personalised approach to patient care

Scoring guidelines:

0 = No/Not reported

1 = Personalised approach to patient care is recommended in national policies or clinical practice

guidelines



“Personalised care and support planning means that people are actively involved in discussions around

managing their health and wellbeing.” NHS England. Personalised care. London: NHS. Cited 18 October

2018. Available from: https://www.england.nhs.uk/personalised-health-and-care/

3.1.2 Holistic approach to patient care taking account of co-morbidities

Scoring guidelines:

0 = Not reported/ Duration of regular visit ≤ 10 minutes

1 = Duration of regular visit 11-14 minutes

2 = Duration of regular visit ≥ 15 minutes





This sub-indicator was intended to understand whether patients have the opportunity to discuss

a range of health concerns and/or multiple conditions when they visit their primary or usual care

physician. The duration of a visit was used as a proxy measure.


This indicator comprises four sub-indicators.

3.2.1 National policies for shared decision-making

Scoring guidelines:

0 = No/Not reported

1 = National policies for shared-decision making exist



3.2.2 Patient aids for shared decision-making

Scoring guidelines:

0 = No/Not reported

1 = Patient aids for shared-decision making exist



3.2.3 Patients’ right to access their own health record

Scoring guidelines:

0 = No/Not reported

1 = Patients have the right to access their own health record



3.2.4 Use of decision quality measures (DQM)

Scoring guidelines:

0 = No/Not reported

1 = Use of decision quality measures (DQM)



38



Domain 4: Patients

4.1 Use of patient-reported outcome measures (PROMs)


4.1.1 Use of PROMs in routine care

Scoring guidelines:

0 = No/Not reported

1 = Use of PROMs in routine care



4.1.2 Patient validation of PROMs

Scoring guidelines:

0 = No/Not reported

1 = Patient validation of PROMs



4.2 Patient advocacy groups

This indicator comprises three sub-indicators.

4.2.1 Existence of independent patient organisations with transparent funding

Scoring guidelines:

0 = No/Not reported

1 = Existence of independent patient organisations

2 = Transparency of funding



4.2.2 Patient/patient organisations involvement in policy development (e.g. national plans/

strategies/HTA)

Scoring guidelines:

0 = No/Not reported

1 = Patient/patient organisations involvement in policy development (e.g. national plans/strategies/

HTA)





4.2.3 Patient/patient organisations involvement in monitoring activities for policy

implementation (e.g. national plans/strategies/HTA)

Scoring guidelines:

0 = No/Not reported

1 = Patient/patient organisations involvement in monitoring activities for policy implementation (e.g.

national plans/strategies/HTA)



4.3 Patient empowerment

This indicator comprises three sub-indicators.

4.3.1 Availability of reliable patient information (targeted at patients)

Scoring guidelines:

0 = No/Not reported

1 = Availability of reliable patient information (targeted at patients)



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

Scoring guidelines:

0 = No/Not reported

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



4.3.3 Use of patient empowerment assessment tools by healthcare providers

Scoring guidelines:

0 = No/Not reported

1 = Use of patient empowerment assessment tools by health providers



40



APPENDIX C: MAPPING SCHEMADomain # Indicator Score range Mapping schema

Strategy

1.1 Strategic plan and patients' bill of rights 0-3

0 = Low 1 = Low 2= Medium 3 = High

1.2National quality standards for monitoring the implementation of patient-centred care

0-20 = Low 1 = Medium 2 = High

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


Provision

2.1 Education and support for healthcare staff 0-20 = Low 1 = Medium 2 = High

2.2 Continuity of care 0-4

0 = Low 1 = Low 2 = Medium 3 or 4 = High

2.3 Patient access to healthcare 0-3

0 = Low 1 = Low 2 = Medium 3 = High

Delivery

3.1Personalised care according to patients' values and preferences

0-3

0 = Low 1 = Low 2 = Medium 3 = High

3.2Patient involvement in shared decision-making

0-4


Patients

4.1Use of patient-reported outcome measures (PROMs)


4.2 Patient advocacy groups 0-4


4.3 Patient empowerment 0-3

0 = Low 1 = Low 2= Medium 3 = High



APPENDIX D: TABLE OF COUNTRY SCORES

Domain # Indicator Sub-indicator Unit Bra

zil

Chin

a

Fran

ce

Ger

man

y

Ital

y

Japa

n

Spai

n

UK

US

Stra

tegy

1.1 Strategic plan and patients' bill of rights

National strategy for patient-centred care0-3

2 2 2 2 1 2 1 2 1

Bill/statement of patients' rights 1 0 1 1 1 0 1 1 1

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

n/a0-2 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

Prov

ision

2.1 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 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 0

2.3 Patient access to healthcare Access to healthcare0-3

1 0 2 2 1 1 1 2 1

Access to innovations in healthcare 1 1 1 1 1 1 1 1 1

Del

iver

y

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 0

Holistic approach to patient care taking account of co-morbidities 0 0 2 0 0 0 1 0 2


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 1

Patients' right to access their own health record 0 0 1 1 1 1 1 1 1

Use of decision quality measures (DQM) 0 0 0 1 0 0 0 1 1

42



Patie

nts

4.1 Use of patient-reported outcome measures (PROMs)

Use of PROMs in routine care0-2

0 0 0 0 0 0 0 1 0

Patient 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

Patients’/patient organisations’ involvement in policy development (e.g. national plans/strategies/HTA)

1 0 1 1 1 1 1 1 1

Patients’/patient organisations’ involvement in monitoring activities for policy implementation (e.g. 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




Part AIn this section we would like to investigate whether the healthcare system of your country has in place

the component building blocks to ensure patient-centred care.

If something is typical practice, even if not quite yet universal, we ask that you answer “yes”. If

something can be found in e.g. pilot programmes or other isolated instances, but isn’t typical, we ask

that you answer “no”.

1. Strategic planning, and incentives, monitoring and evaluation of patient-centred care

Yes No Don’t know

My country has a strategic plan for patient-centred care

My country has a bill or statement of patients’ rights

My country has national quality standards for monitoring the implementation of patient-centred care

My country uses value-based payment systems as incentives for implementation of patient-centred care (for example payment systems focused on patient outcomes)

Healthcare professionals are trained in the principles of patient-centred care

Healthcare professionals receive sufficient support with regard to stress, workload management and other job pressures

2. Continuity of care, patient access to healthcare

Yes No Don’t know

For the patient group my organisation represents, my country has national guidelines for co-ordinated and integrated care with multidisciplinary teams

Access to primary care doctors or usual providers is available to everyone

Scheduling doctors’ appointments (in general or primary care) is easy

Navigating the wider health system (secondary/tertiary care) is easy and designed around the needs of the patient

Patients generally have access to the health services they need

Patients generally have access to the latest innovations in healthcare (such as new medicines or technologies)

APPENDIX E: SURVEY QUESTIONNAIRE

44



Part BIn this next section, we would like to know about the importance you place on various factors (or

domains) associated with patient-centred care. Please answer from the point of view of the patients

that your organisation represents. Each domain has six statements; please select the three most

important statements for each domain.

5. Patient experience

Factors relating to how convenient care is for patients, in terms of admission and referral process,

timing of tests, and timely and sufficient time spent with a courteous and helpful healthcare

professional.

3. Personalised care, patient involvement in their own care

Yes No Don’t know

Health professionals take a personalised approach to patient care, according to patients’ values and preferences

Co-morbidities are taken into account when determining patient care options

There are national policies for shared decision-making

There are regional (i.e. sub-national) policies for shared decision-making

Patients aids are used to support shared decision-making

Patients have a right to access their own health records

Patient-reported outcome measures (PROMs) are used in routine care

Patient groups are consulted about validating PROMs

4. Patient advocacy groups, patient empowerment

Yes No Don’t know

For the patient group my organisation represents, my country has independent patient organisations with transparent funding

Patient organisations are involved in policy development (e.g. national plans, Health Technology Assessment, etc.)

Patient organisations are involved in monitoring activities to assist policy implementation

Patients have access to reliable information, targeted at them

Health education initiatives targeted at the general population are readily available

Patient empowerment measurement tools are used by healthcare providers

Well-organised admission and referral process

Care professionals are interested in what the patient has to say

Patient is treated with courtesy and respect at all stages of the admission process

Patient does not have to wait a long time to see the care professional they need

Patients feel they have sufficient time with care professional (e.g. to explain test results)




6. Shared decision-making

Factors relating to how transparent relationships are between patients and providers, and whether

there is opportunity and support for genuine shared decision-making and co-ownership of care plans.

7. Inclusiveness and support

Factors relating to how inclusive care providers are in terms of ensuring that all patients have equal

access to quality care, regardless of issues such as age, language, gender, ethnicity or socio-economic

background.

8. Outcomes that matter to patients

Factors relating to how focused healthcare professionals are in terms of ensuring that outcomes of the

greatest importance to the patient are measured and used as criteria of success.

9. Technology to improve accessibility and convenience

Factors relating to whether healthcare providers are using technology to improve accessibility and

convenience for patients, including sharing locally collected data and the option for online video

consultations

Patients are provided with options for care

Patients are invited to be partners in decision-making about their care options

Patients are fully informed about side-effects of treatment

Family/friends can participate in discussions with care professionals

Patients are allowed to review doctors’ notes and/or lab results

High-quality information (in multiple formats) is offered to patients

Cultural differences are respected throughout the care process

Patients’ mobility concerns are taken into account when determining care options

Information is available in main applicable languages

Translation service is offered at point of care

Care providers take patients’ multimorbidity into account

Care providers take into account a patient’s possible membership of a vulnerable population, due to age, cognitive impairment, ethnicity or socio-economic dimensions

Patients are offered advice on prevention as well as cure

Patients have a say in the outcomes used to measure effectiveness of treatment

Patients are given advice about remaining healthy in future

Patients feel that their emotional needs are being addressed

Care professionals are interested in how a condition impacts upon patients’ lives

Care professionals use validated patient reported outcome measures whenever possible

Patients can share their health data with providers from their own wearables

Patients can communicate directly (phone, email and/or SMS) with their care providers

Patients can access care via online/video consultations

Patients can schedule appointments online

Patients can access/carry their own medical records electronically

Care providers offer technological solutions for tracking health

46



10. Most important domains

The above questions have explored what is most important within certain domains of care. We’d now

like you to rank which of the above five domains of care are most important for your patients. Please

select the two most important domains of care.

Part C11. Please indicate how well the following are achieved in your country.

12. Please indicate which of the following tools (if any) are used by care services in your

country to monitor the application of patient-centred care. Please select all that apply.

13. Please provide an example, from your country, of what you consider to be a “best practice”

example of the application or monitoring of patient-centred care in any disease area (not just

your own area of focus).

Patient experience




Technology to improve accessibility and convenience

Very well

Reasonably well

Not very well

Not at all

Don’t know

Patients are involved in the creation of their care plan, and throughout the care process

Health services are designed to address patients’ clinical needs and support them to maintain their own health and wellbeing between clinical appointments

Health policy mandates that clinical, emotional and social support are all provided to patients

People with long-term conditions are enabled to manage their own health in their day-to-day lives

Patients are asked to submit formal feedback to care providers via regular (e.g. quarterly) questionnaires

All care providers are required to attend regular training on patient-centred care initiatives

Care providers are incentivised to collect feedback from patients

Patients are incentivised to provide feedback to care providers

Patient focus groups are arranged by care providers to discuss patient-centred care initiatives

Care providers are regularly surveyed by administrators and/or policymakers on the effectiveness of patient-centred care initiatives

Patients are regularly surveyed by administrators and/or policymakers on the effectiveness of patient-centred care initiatives

Patients are informally asked for feedback by care providers



14. Please indicate the extent to which you agree or disagree with the following:

Strongly agree

Agree Disagree Strongly disagree

Don’t know

Other countries have better policies on patient-centred care

In my country there are big regional discrepancies in the implementation of patient-centred care

Patient-centred care policies in other parts of the country will not work in my own region

Policymakers in my country are committed to learning from best practice in patient-centred care in other countries

48



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of Patient Organisations, 2007. Available from: http://iapo.org.uk/sites/default/files/files/IAPO%20Patient-Centred%20Healthcare%20Review%202nd%20edition.pdf.

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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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