Proposal on Achieving Better Communication
Between Healthcare Providers and Beneficiaries
Building a Flat Healthcare System That Draws Upon Both Sidesof Healthcare Equally

NCD Alliance Japan/Health and Global Policy Institute
September 20201

Introduction
Listening to the Voices of Those Most Affected to Build a Flat Healthcare System That Draws Upon
Both Sides of Healthcare Equally
Non-communicable diseases (NCDs) cause approximately 71% of all deaths worldwide,1 making theimplementation of effective measures for NCDs an urgent issue facing society. Until the 1950s,2 theleading causes of death in Japan were infectious diseases, but NCDs such as cancer and stroke
currently cause around 82% of deaths in Japan,3 making NCD countermeasures a significant issue forJapan as well. For many infectious diseases, people receive treatment provided by medical staff while
symptoms are present and can return to their normal everyday lives once they fully recover. However,managing NCDs requires long-term lifestyle changes, similar to chronic diseases. Healthcare and dailyliving become inseparable and must be kept in balance by people living with NCDs (PLWNCDs) overthe long term. To uphold their roles in society, to live with a sense of purpose, and to achieve lifelong
dreams and other aspirations, PLWNCDs must work with medical staff4 as partners while maintaining
harmony between daily living and their disease. These conditions do not apply only to PLWNCDs;
they also apply to people with various chronic diseases such as intractable diseases or long-term
infectious diseases such as HIV/AIDs. The 2016 Comprehensive Survey of Living Conditions 5
conducted by the Ministry of Health, Labour and Welfare (MHLW) found that 390.2 out of every 1000
people in Japan regularly visit healthcare institutions for some disease. If an increasing number of
diseases can be controlled by advances in medicine while population aging advances and daily
routines for the general population continue to shift, it is likely that the number of people who canlead normal everyday lives while receiving long-term care will continue to increase. In response tothis situation, we met with PLWNCDs, people living with various chronic diseases, and stakeholders
involved in healthcare to examine methods for constructing sustainable healthcare and social
systems and to identify measures needed to develop those systems further.
“Nothing about us without us” was used as a slogan to represent the feelings of people withdisabilities during the creation of the Convention on the Rights of Persons with Disabilities and is awell-known phrase made famous by its use in many fields of activism. These words communicate thefact that the people directly affected by an issue understand the problems facing them better than

1

World Health Organization (2018), “Noncommunicable diseases country profiles 2018”https://apps.who.int/iris/handle/10665/274512 Last retrieved June 25, 2020.
2 Ministry of Health, Labour and Welfare (MHLW). White Paper on the Labour Economy 2014. pp.11
https://www.mhlw.go.jp/wp/hakusyo/kousei/14/dl/1-01.pdf Last retrieved July 17, 2020.
3 World Health Organization (2018), “Noncommunicable diseases country profiles 2018”
4 Refers to all people engaged in providing healthcare.
5 MHLW. “2016 Comprehensive Survey of Living Conditions.” https://www.mhlw.go.jp/toukei/saikin/hw/k-tyosa/ktyosa16/dl/06.pdf Last retrieved June 25, 2020.

2

anyone else. These words emphasize empowerment 6 and aim to restore rights to the people
affected by an issue who were previously only treated as the target of protection so they can beplaced in positions of equal importance to those held by other stakeholders playing critical roles in
the policy formulation and implementation processes. This slogan also applies to people living withdiseases, who are the direct recipients of and parties most affected by healthcare.
Taking an overhead look at the situation in Japan, where parties on the supply side of healthcare areconsidered to have the most direct and significant influence when formulating healthcare policy andbuilding healthcare systems, active efforts to reform the healthcare system are advancing with a focus
on healthcare providers. In addition to these supply-side reform efforts, however, we anticipate thatdemand-side reform which focuses on people on the receiving side of healthcare (namely, people
with diseases and the people close to them) will be needed to successfully create a better healthcare
system that improves quality of life (QOL) for every member of the public. We also look forward to
the reinforcement of efforts promoting cooperation among people receiving healthcare andhealthcare providers. In the previous era, healthcare policy was shaped and advanced by a few
specific stakeholders. Moving forward, if we do not transition to an era in which those developments
are driven by numerous unspecified stakeholders, it is likely that maintaining sustainable healthcare
and social systems will be difficult because the public – which supports the healthcare system throughhealth insurance premiums and labor – will grow less engaged in healthcare policy in the mediumto long-term. In addition to people with diseases, members of the wider public are also among theparties most affected by healthcare policy and systems, so from the perspective of using resources
effectively, systems that make full use of the inherent power of the public to engage in promoting
health and medicine must be designed.
With that backdrop, our “Proposal on Achieving better Communication between Healthcare
Providers and Beneficiaries” clarifies the status of and issues facing cooperation in clinical settings7
between people receiving healthcare and medical staff. It also provides recommendations forovercoming those issues and for promoting cooperation. During the creation of this proposal,
Coronavirus Disease 2019 (COVID-19) began to spread rapidly around the world, giving manymembers of the public the opportunity to see that their cooperation is essential to sustain healthcare
services. With the deepest gratitude to everyone working in healthcare, we will cooperate withvarious stakeholders including the public to keep the content of this proposal up-to-date and relevantto the current situation as we continue working towards achieving a flat healthcare system that draws

6

Empowerment: Drawing out the inherent potential of or inspiring an individual or group by granting themauthority or enhancing their capacity to act.
7 Refers to settings in which people receiving healthcare receive medical examinations or treatment.

3

out the abilities of parties on both sides of healthcare in an equal manner.

4

Table of Contents
Introduction ....................................................................................................................... 6
1.1 Introducing Health and Global Policy Institute ................................................................ 6
1.2 Introducing NCD Alliance Japan ...................................................................................... 6
1.3 Defining NCDs ............................................................................................................... 6
Executive summary ............................................................................................................ 7
Steps towards the creation of a flat healthcare systemエラー! ブックマークが定義されていません。
3.1 The current situation surrounding healthcare policy in Japan ........................................ 13
3.2 The need to construct the flat healthcare system we envision ....................................... 13
3.3 Defining “cooperation” and examining three settings in which people on both sides ofhealthcare can cooperate ........................................................................................... 14
3.4 Why we have focused on cooperation in clinical settings ............................................... 15
3.5 Eight requirements for cooperation in clinical settings .................................................. 16
Surveys ....................................................エラー! ブックマークが定義されていません。
4.1 Overview of the two surveys conducted ....................................................................... 18
4.2 Overview of both surveys and their results ................................................................... 19
Survey 1: Public opinion survey ..........エラー! ブックマークが定義されていません。
Survey 2: In-depth interviews .............エラー! ブックマークが定義されていません。
4.3 2 Observations on the results of both surveys............................................................... 44
Four perspectives for achieving a flat healthcare system and examples of specific actions foreach stakeholder to take .......................................................................................................... 47
Conclusion ....................................................................................................................... 63
6.1 The limitations of this study and topics to examine in future discussions ....................... 63
6.2 Collaborators and supporters who contributed to this project ....................................... 635

6

Introduction
1.1 Introducing Health and Global Policy InstituteHealth and Global Policy Institute (HGPI) is a Tokyo-based independent and non-profit health policy
think tank established in 2004. In its capacity as a neutral think-tank, HGPI involves stakeholders fromwide-ranging fields of expertise to provide policy options to the public to successfully create citizenfocused healthcare policies. Looking to the future, HGPI produces novel ideas and values from astandpoint that offers a wide perspective. It aims to realize a healthy and fair society while holding
fast to its independence to avoid being bound to the specific interests of political parties and otherorganizations. HGPI intends for its policy options to be effective not only in Japan, but also in thewider world, and in this vein the institute is very active in creating policies for resolving global healthchallenges.
1.2 Introducing NCD Alliance Japan8
NCD Alliance Japan is a collaborative platform operated by HGPI for engaging civil society andpromoting countermeasures for NCDs such as cancers, cardiovascular diseases (CVDs), diabetes,
chronic respiratory diseases, and mental and neurological disorders. NCD Alliance is a collaborative
platform bringing together over 2000 civil society organizations and academic institutions in morethan 170 countries, and NCD Alliance Japan has operated as its Japanese branch since 2013. We
became a full member of the NCD Alliance on January 17, 2019. Through three key activities, which
are formulating policy proposals, supporting PLWNCDs and other parties most affected by NCDs, andconducting survey research, NCD Alliance Japan aims to unite PLWNCDs and other parties mostaffected by NCDs with multi-stakeholders in industry, government, academia, and civil society fromJapan and abroad to contribute to solving issues in the field of NCDs.
1.3 Defining NCDs
According to the World Health Organization (WHO), the term “noncommunicable diseases” refers tochronic diseases such as cancer, diabetes, cardiovascular diseases (CVDs), chronic respiratory
diseases, and mental and neurological disorders. These diseases tend to occur due to genetic,
physiological, environmental, and behavioral factors and can be caused or worsened by an unhealthy
diet, a lack of exercise, smoking, or excessive alcohol use. According to WHO statistics, NCDs are thecause of 82% of deaths in Japan and 71% of deaths worldwide,9 making the establishment of NCD
countermeasures an urgent issue.

8

NCD Alliance Japan uses the abbreviation “NCD” with the express permission of National Clinical Database (NCD),
which is a registered trademark.
9 World Health Organization (2018), “Noncommunicable diseases country profiles 2018”7

Executive summary
Looking to 2040, when rapid demographic change caused by a falling birthrate and population aging
will result in significant healthcare supply shortages, the Japanese government has begun
implementing comprehensive reforms of the healthcare provision system called the Trinity Reforms
of Healthcare Policy. These reforms include the Regional Medical Initiative, measures against theuneven distribution of doctors, and work style reform for doctors and other medical professionals.
However, many stakeholders from each domain have voiced their apprehension or disagreement
towards these revolutionary reforms, slowing their implementation. One of the causes for that delay
is insufficient involvement of patients and other parties on the receiving side of healthcare services.
Although recognition towards the importance of involving patients and other affected parties in thehealthcare policy formulation process has grown in recent years, these efforts have not advanced tothe point that the people on the receiving side of healthcare services have the most direct andsubstantial influence on the healthcare policy formulation process.
In response, NCD Alliance Japan has created this proposal so that future health policy in Japan cancreate a flat healthcare system that allows parties on both sides of healthcare to participate while
making full use of their abilities. Our workshops and hearings demonstrated that cooperation fromboth of those parties is absolutely essential to build a flat healthcare system. Among the three typesof cooperation that will be necessary to successfully create a flat healthcare system, we have placeda particular focus on cooperation within clinical settings, which many patients and other affectedparties recognize as a significant challenge. To identify current issues and factors that obstructcooperation within clinical settings, we conducted a public opinion survey and series of in-depth
interviews10 exploring that theme.
Our public opinion survey showed that over 90% of respondents said they want their opinions andpreferences to be taken into account when making decisions concerning the direction of treatment
and when selecting medicines. However, less than 30% of respondents were accustomed toindependently participating in healthcare, about 40% of respondents were dependent on thesituation, and the remaining group, which was over 30% of respondents, said that they could not
proactively participate in healthcare. This result shows that there is a mismatch in the will toparticipate and the real-world circumstances surrounding cooperation during important decisionmaking opportunities such as when deciding the direction of treatments or when selecting medicines.
Three factors obstructing cooperation were identified in our in-depth interviews: a lack of
empowerment for patients and other affected parties, shortcomings from partners during

10

One-on-one interviews conducted with a member of the survey target group and the interviewer.

8

opportunities to cooperate, and insufficient preparation of the environment.
To overcome these three hurdles, to foster cooperation in clinical settings, and to successfully createa flat healthcare system that draws equally upon the abilities of both those providing healthcare andthose receiving it, NCD Alliance Japan has generated examples of concrete actions to be taken byeach stakeholder from the following four perspectives.

9Four perspectives for successfully creating a flat healthcare system
Perspective 1: Empower people receiving healthcare(1) Provide health education that includes information on diseases and health, how to select the righthealthcare institutions and the best times to visit them, how to make the most out of visits tohealthcare institutions, and other such information.
(2) Verify and support trustworthy medical information websites so people can access accurate
medical information.
(3) Promote the development of decision aids and other decision-making guides as well as theeffective use of existing tools.
Perspective 2: Emphasize communication when training medical staff(1) Implement education and training programs that emphasize communication and Shared Decision
Making (SDM) in educational processes for all disciplines.
(2) Train family doctors and general practitioners and promote their placement in every region.
Perspective 3: Build systems to support decision-making among people receiving healthcare for
topics related to health and healthcare(1) Establish counselling support systems within healthcare institutions.
(2) Gather evidence and create quality standards to promote the effective use of peer support.
(3) Make effective use of information technology (IT) to share information between people receiving
healthcare and medical staff.
Perspective 4: Establish cooperative systems for the entire life course(1) Achieve team-based medicine that includes the people receiving healthcare on treatment teams.
(2) Build a framework for collecting feedback from people receiving healthcare.
(3) Construct a platform for promoting cooperation.

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Examples of specific actions for each stakeholder to takeMembers of the public (including patients and other parties most affected) should:

Use trustworthy sites when looking up medical information.

Think about their preferred types of healthcare and future lifestyles before developing
diseases and create opportunities to communicate those preferences to family members andsupporters.



Make time to think about how to select the most fitting healthcare institutions and visit times
and how to make the most of those visits. Use decision-making guides and similar tools when
doing so.



Find family doctors with whom they can share their healthcare preferences and desired future
lifestyles.



Develop an interest in building networks and forming communities among people receiving
healthcare and seek decision-making support for topics related to health or healthcare.



Cooperate with academia, medical staff, and the Government in efforts to build evidence for
effective types of peer support, such as by participating in verification studies or helping to
identify best practices.



Proactively engage in reviewing decision-making processes for health and healthcare andproviding feedback to medical staff when such opportunities arise.

Be conscious of consulting healthcare specialists other than physicians.

The Government should:Implement educational programs at elementary and middle schools that teach students about
topics like how to select and use healthcare institutions or the best methods ofcommunicating with medical staff in addition to providing them with information on diseases,
healthy lifestyle habits, and similar knowledge.

Engage in efforts to promote health education and provide accurate medical information somembers of the public can access information on and think about decision-making for topics
related to healthcare and health before developing diseases.

Help disseminate decision aids and other decision-making guides that foster cooperation
between medical staff and people receiving healthcare.



Establish systems to support decision-making among people receiving healthcare withmultidisciplinary cooperation, starting with family doctors and general practitioners.



While cooperating with healthcare institutions and insurers, examine the best methods forproviding information to the public on healthcare institutions that provide family doctor services.



Recognize the need for communication between people receiving healthcare and medical staff
and SDM in clinical settings and provide leadership in efforts to provide training on
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communication and SDM to all medical staff.
Provide financial assistance for developing programs and constructing guidelines that effectively
teach communication and SDM methods.

Establish consultation offices within healthcare institutions where patient supporters, such as
their family members, can receive counseling.

Examine the best way to evaluate and reward healthcare institutions that implement
consultation support services for people receiving outpatient care, such as by requiring users tomake small payments for those services.



Consider methods of reforming consultation support services within healthcare institutions tostandardize the quality of such services, such as by requiring all parties responsible for providing
counselling services within healthcare institutions to undergo training or by defining indicators
to use as conditions to qualify for the Patient Support System Improvement Premium. An
example of one such indicator might be the ratio of the number of consultations to the total
number of hospitalized patients.



Acknowledge and reward effective efforts to provide peer support consultations undertaken bymunicipalities.



While collaborating with the private sector, promote research and development on products
and services that promote cooperation between people receiving healthcare and medical staff
such as treatment apps or tools for online medical examinations and information sharing.

Conduct user satisfaction surveys for all healthcare institutions and utilize user feedback whenbuilding healthcare provision systems.



Establish a platform that promotes cooperation by creating networks among related parties orby providing matching support.



Establish a framework for evaluating and verifying products and services provided by the private
sector that satisfy the needs of the public.

Medical staff should:Conduct training within healthcare institutions using decision aids and other decision-making
guides and tools developed by academic societies.

Consider requiring communication training programs to be included in educational programs for
specialist doctors.

Proactively participate in training programs on communication and SDM.



Reinforce healthcare institutions’ systems that provide on-site consultation support to people
receiving healthcare.

Examine how to make effective use of consultation support systems for people receiving
healthcare and their supporters, such as their family members.
12Conduct user satisfaction surveys targeting people receiving healthcare and, based on the
results, establish on-site systems at healthcare institutions for exploring ways to improve care.

Promote the use of online medical examinations, tools for sharing information between people
receiving healthcare and medical staff, and treatment apps.

The private sector (including companies and organizations) should:
Promote awareness-building and educational programs for improving health literacy among
employees and make efforts to implement working-style reform and help employees manage
their health.



Advance research and development on products and tools that promote cooperation between
people receiving healthcare and medical staff, such as treatment apps and tools for online
medical examinations and information sharing.



Advance research and development on products and services for efficiently collecting feedback
from people receiving healthcare.

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Steps towards the creation of a flat healthcare system
3.1 The current situation surrounding healthcare policy in Japan
Japan’s national health insurance system covers every citizen so they can access the necessary
healthcare services while shouldering a certain portion of the burden and this system has received
recognition from the international community. Maintaining a high standard of public health has led
to average life expectancies that are among the longest in the world; the average life expectancies inJapan are 87.32 years for women and 81.25 years for men.11 However, Japan is currently facing awide range of serious issues, including rapid demographic change caused by a shrinking birthrate,
population aging, and population decline; obstacles to economic growth, segmentation of the middle
class, and transformation of regional communities; and changes to the disease structure that has
expanded the need for healthcare and long-term care, increasing prices accompanying advances inhealthcare technology, and heavy workloads for physicians.
To respond to these various issues accompanying these changes in society, the Japanese Government
has initiated the Trinity Reforms of Healthcare Policy with its sights set on 2040. These reforms
include the Regional Medical Initiative, work-style reform for doctors and medical professionals, andmeasures against the uneven distribution of doctors, all of which are reforms targeting the supply
side of healthcare. However, there have been many voices of uncertainty or disagreement to thesesystemic reforms from various stakeholders, with a significant gap in opinions among regions. One
factor that may currently be slowing the implementation of these reforms is insufficient involvementfrom people receiving healthcare. Although recognition towards the importance of involving patientsand other affected parties in the healthcare policy formulation process has grown in recent years,
these efforts have not advanced to the point that the people on the receiving side of healthcare
services have the most direct and substantial influence on the healthcare policy creation process. In
addition to creating more opportunities for people receiving healthcare to be involved in that process,it is necessary to emphasize the active involvement of every citizen, who are the parties most affectedby healthcare, in efforts to promote health or by educating them on how to make effective use ofhealthcare institutions and pharmacies.
3.2 The need to construct the flat healthcare system we envision
Based on this background, NCD Alliance Japan believes future healthcare policy in Japan must createa flat healthcare system that allows for equal participation from both the supplying and receivingsides of healthcare. In this document, we define a “flat healthcare system” as one in which (1)necessary knowledge and information is shared among each stakeholder, (2) all citizens, including

11

MHLW. Abridged Life Tables for 2018.https://www.mhlw.go.jp/toukei/saikin/hw/life/life18/dl/life18-15.pdf. Last
retrieved June 25, 2020.

14

patients, healthcare beneficiaries, and medical staff can participate voluntarily and with peace ofmind, and (3) improving daily living, quality of life (QOL), and satisfaction levels is emphasizedalongside treating diseases, and is (4) operated as a sustainable healthcare system in an effective,
efficient manner.
Compared to the current healthcare system, a flat healthcare system allows healthcare providers andrecipients to have equal relationships, and their abilities are drawn upon equally. This difference isillustrated in Figure 1. In past workshops and hearings conducted by NCD Alliance Japan, participants
pointed out that it is absolutely essential to draw out the powers of both healthcare providers andhealthcare recipients to the greatest extent possible in this manner and allow both parties toparticipate in healthcare under the basis of mutual cooperation.

Figure 1: Illustration of a flat healthcare system
3.3 Defining “cooperation” and examining three settings in which people on both sides ofhealthcare can cooperate
Cooperation between healthcare providers and beneficiaries is a crucial element for successfullybuilding a flat healthcare system. NCD Alliance Japan defines “cooperation” as “A state in whichstakeholders including patients and other parties most affected can collaborate in a manner that
surpasses the boundaries of roles by sharing the latest knowledge, information, or opinions with eachother continuously and while being aware of each other’s roles with the goal of improving QOL for

15

people receiving healthcare or to uphold their dignity and rights.”12 Additionally, we believe thatcooperation of this sort exists in the three settings described below.
(1) Cooperation in clinical settings“Cooperation in clinical settings” mainly refers to cooperation that takes place in healthcare
institutions during which physicians, nurses, and other medical staff and patients or other healthcare
beneficiaries communicate or engage in decision-making. Also, that mutual cooperation must not
only take place at predetermined times; it must take place continuously and at every step in the entire
patient journey,13 starting with the detection of a disease to diagnosis, treatment, and daily living
after treatment.
(2) Cooperation in the policy formulation process“Cooperation in the policy formulation process” is cooperation with the goal of influencing theGovernment’s policy decision-making process conducted through actions undertaken by members ofcivil society or cooperation between citizens and the Government or the legislation in the policy
formulation process. This cooperation is not limited to voting, but also includes participation in
Government activities. Examples of those activities include participating in deliberation councils
established by government agencies, making policy proposals, and cooperating with survey activities
and their publication.
(3) Cooperation in research and development and establishing treatment guidelines
This type of cooperation occurs when citizens cooperate with researchers, private corporations, andsimilar parties in medical research or clinical trials. Specifically, in medical research or clinical trials,
we believe this includes situations in which patients and other citizens are study participants, when
researchers share information or knowledge gained from the results of studies with society, and when
patients and citizens form partnerships with researchers and are involved in planning, designing,
managing, and evaluating research as well as disseminating the results.14
3.4 Why we have focused on cooperation in clinical settings
Among the three settings described above, it became clear over the course of the workshops andhearings conducted by NCD Alliance Japan in the past that many patients and related parties wereparticularly aware of problems in clinical settings related to communication with medical staff or

12

Both definitions from NCD Alliance Japan.
The series of events that take place in the life of a person receiving healthcare including detecting a disease,diagnosis, treatment, and daily living thereafter.
14 Japan Agency for Medical Research and Development, 2019. Patient and Public Involvement (PPI) Guidebook,
pp.7. https://www.amed.go.jp/ppi/guidebook.html. Last retrieved July 17, 2020.
13

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support for decision-making on health and medical treatment. Furthermore, many PLWNCDs require
treatment that spans long periods of time, regular visits to healthcare facilities, and treatments using
pharmaceuticals or that require diet management, and they must balance these treatments with theactivities of day-to-day life, such as employment or hobbies. Longer treatment times mean PLWNCDs
must work harder to maintain relationships with medical staff compared to people whose diseases
require treatments that end after relatively short periods. Therefore, we can say cooperation inclinical settings is essential. The progression of NCDs can be greatly affected by individual daily
routines, so awareness and acceptance towards treatment from PLWNCDs is essential. By completing
processes in which medical staff and people receiving healthcare make joint decisions concerning
treatment plans, it improves medication adherence and behavioral change, helps services to beprovided in a more effective and efficient manner, and improves treatment outcomes. For thesereasons, this proposal focuses on cooperation in clinical settings.
3.5 Eight requirements for cooperation in clinical settings
Defining cooperation in clinical settings as, “A state in which both people receiving healthcare andmedical staff can reach consensus on treatment plans and are able to alter those plans after people
receiving healthcare discuss how they want to live their lives, their desired future lifestyles, and theirneeds and desires towards their purpose in life with medical staff.” This proposal identifies eightitems we consider absolutely essential for cooperation in clinical settings. Based on this definition
and these elements, this proposal will provide recommendations for successfully achieving a flat
healthcare system based on surveys and analyses of the current situation surrounding cooperation
between people receiving healthcare and medical staff and factors obstructing cooperation.


People receiving healthcare should have:（1） The ability to think about how they want to live their lives, their desired future lifestyles, andtheir own needs and desires towards their purpose in life.
（2） The ability to tell their families and supporters how they want to live their lives, their desired
future lifestyles, and their needs and desires towards their purpose in life.
（3） The ability to communicate how they want to live their lives, their desired future lifestyles, andtheir needs and desires towards their purpose in life to medical staff.
Medical staff should have:（4） Awareness towards the need to ask people receiving healthcare to share how they want to live
their lives, their desired future lifestyles, and their needs and desires towards their purpose inlife.
（5） The ability to listen to people receiving healthcare when they share how they want to live their
17

lives, their desired future lifestyles, and their needs and desires towards their purpose in life.
（6） The ability to form treatment plans based on how people receiving healthcare want to live theirlives, their desired future lifestyles, and their needs and desires towards their purpose in life.
Requirements for both parties:（7） After people receiving healthcare consent to treatment plans through interacting with medical
staff, they must be able to decide on a treatment plan together with medical staff.
（8） It must be possible for people receiving healthcare and medical staff to have regularconversations about updating treatment plans in accordance to changes in the patient’s life planor feelings.

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Surveys
4.1 Overview of the two surveys conducted
To grasp the situation surrounding cooperation between people receiving healthcare and medical
staff in clinical settings when formulating this proposal, we conducted one quantitative survey andone qualitative survey with the goal of clarifying the obstructing factors to cooperation on both the
supplying and receiving sides of healthcare. Details on these surveys are given in Figure 2. In the firstsurvey, the main purpose was to grasp the situation surrounding cooperation between people
receiving healthcare and medical staff. To do that, we conducted a nationwide public opinion surveyof 1,000 men and women age 20 and over. In the second survey, we conducted in-depth interviews
with three people representing the parties most affected with the main goal of identifying factors
obstructing cooperation between people receiving healthcare and medical staff and the backgrounds
to those factors. The interviewer was a cultural anthropologist and obstructive factors and theirbackgrounds were collected by observing psychological or behavioral patterns that interview subjects
may not have been particularly aware of themselves.
As such, this study used a mixed method using a quantitative survey and a qualitative survey. The
complementary nature of the two surveys allowed us to get a clear view of the situation surrounding
cooperation between people receiving healthcare and medical staff and factors obstructing thatcooperation from multiple perspectives.
Type

Overview

Quantitative

PublicopinionNationwide online survey of 1,000 men

surveysurveyand women

Qualitative

In-depth

Unstructured interviews with threesurveyinterviews

patients or related parties; threeinterviews per subject

Figure 2: Overview of surveys conducted as part of this study

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4.2 Overview of both surveys and their results
Overviews for each survey and their results are detailed below. Information for the public opinion
survey is provided first and information for the in-depth interviews is provided second, followed byour observations on the results of both surveys.
Survey 1: Public opinion survey(1) Survey overview

An internet-based public opinion survey was administered to 1,000 males and females over 20 yearsof age throughout Japan during March 2020. The breakdown of respondent demographics is shownin Figure 3. Respondents were selected by region, age, and sex in ratios in that correspond to thedemographics of the total population of Japan. The survey was administered only to those who gave
informed consent after being provided an explanation of the survey’s objectives. The survey was selfadministered and a serial number was given to each respondent to ensure anonymity.

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(2) Survey results

Key findings of the public opinion survey
The public opinion survey was conducted with the goal of clarifying the general situation surrounding
cooperation between people receiving healthcare and medical staff. Its key findings are described
below.



92.9% of respondents said they want treatment plans or medicines to be selectedaccording to their opinions, preferences, daily routines, and desired future lifestyles.

When asked about their ability to communicate symptoms to physicians when receiving
medical examinations at hospitals, 79.0% of respondents said they can communicate
such information. However, only 28.6% said they always do so, 38.0% only do sosometimes, and 33.4% never or almost never communicate such information.

Compared to respondents with family doctors, fewer than half of respondents withoutfamily doctors said they always tell medical staff their opinions, preferences, daily
routines, and desires towards future lifestyles when selecting treatment plans or
medicines.

When asked why they could not always tell medical staff their opinions, preferences,daily routines, and desired future lifestyles, the most common responses were “The
doctor doesn’t ask” (44.0%), followed by “I don’t possess medical knowledge” (38.9%).

Over 61.5% of respondents said that physicians are the easiest people to talk to among
health workers.



70.0% of respondents said that they did not have a clear idea what their desired future
lifestyle would be if they developed a disease before they had a disease.

Over 72.5% of respondents said they had not told their families or loved ones what
their desired future lifestyle would be if they developed a disease before they had adisease.

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Survey results

Respondent attributes
Past medical history
When asked about their medical history, 63.3% of all respondents had no past illnesses.
Among the options provided by the survey, the next most common response was “Other”(14.5%), followed by “Respiratory disease” (7.1%), “Mental disorder” (6.1%), and “Diabetes”(5.5%) (Figure 4).

Medical History

Figure 4

Q: Please select all items that apply to your personal medical history.
(March, 2020, n=1,000)

0%

10%

20%

Nothing in particular

40%

50%

60%

70%

63.3%

Other

14.5%

Respiratory disease

7.1%

Mental disorder

6.1%

Diabetes

5.5%

Heart disease

4.9%

Cancer

4.7%

Brain or nerve disorder

30%

2.7%

Source: Health and Global Policy Institute, “Public Opinion Survey on Cooperation between Providers and Recipients in Healthcare.”22

Family doctors
We asked respondents if they had a family doctor. The most popular response was “No, butthere is a hospital or clinic I visit frequently” (40.9%), followed by “I do” (31.9%), and “I donot” (27.2%) (Figure 5).

Presence of family doctor

Figure 5

Q: Do you have a family doctor*?
(March, 2020, n=1,000)

40.9%

31.9%

No, but there is a hospitalor clinic I visit frequently

I do

27.2%

I do not* A family doctor is a close and trusted physician one can consult on any topic concerning health and depend upon for references to specialist
healthcare institutions when necessary.
Source: Health and Global Policy Institute, “Public Opinion Survey on Cooperation between Providers and Recipients in Healthcare.”23

Desire to cooperate and current situations surrounding cooperationDesire to cooperate when selecting treatment plans or medicines
Our survey asked, “When selecting treatment plans or medicines, do you want selections
to be made according to your opinions, preferences, daily routines, and desired future
lifestyle?” Most respondents (92.9%) either said they wanted to make selections based on
those factors (48.7%) or that they somewhat wanted to make selections based on thosefactors (44.2%) (Figure 6).

24Communication during medical examinations (1): Can you communicate your symptoms
to physicians?
We asked “Can you communicate your symptoms to physicians when receiving medical
examinations at hospitals?” Most respondents (79.0%) said that they can always tellphysicians about their symptoms, while 14.6% of respondents selected “I sometimes can,”
5.6% chose “I can’t communicate them very well,” and 0.8% responded “I cannot
communicate them” (Figure 7).

25Communication during medical examinations (2): Can you share your opinions or
preferences with medical staff?
The most common response to “Are you able to talk to physicians about your opinions,preferences, daily routines, and desired future lifestyle when selecting treatment plans or
medicines during medical examinations at hospitals?” was “Sometimes,” which wasselected by 38.0% of all respondents. It was followed by “Always” (28.6%), “Not very often”(27.3%), and “Never” (6.1%) (Figure 8).

Communication during medical examinations (2)Figure 8

Q: Are you able to talk to physicians about your opinions, preferences, daily routines, and desired future lifestylewhen selecting treatment plans or medicines during medical examinations at hospitals?
(March, 2020, n=1,000)

40%
35%
30%
25%
20%
15%

38.0%
28.6%

27.3%

10%
5%

6.1%
0%
I always can

I sometimes can

I can't communicate themvery wellI cannot communicate them

*For example, “I want to avoid medicines that cause drowsiness due to my job,” “I want to continue working or pursuing my hobbies, so I want toconsider treatment plans that involve few hospital visits,” or “I want to try a surgery that wasn’t in our original treatment plan.”
Source: Health and Global Policy Institute, “Public Opinion Survey on Cooperation between Providers and Recipients in Healthcare.”26Communication during medical examinations (3): Differences among people with andwithout family doctors, regular hospitals, and regular clinics
We compared respondents by their ability to share their opinions, preferences, routines,
or desired future lifestyle with physicians with whether or not they had family doctors,
regular hospitals, or regular clinics. Among people always share, 41.4% had family doctors,
24.7% had hospitals or clinics they visit frequently, and 19.5% did not have family doctors(Figure 9).

27Willingness to reflect patients’ opinions and preferences in treatment plans among
medical staff
We asked survey participants if medical staff ask them about their opinions, preferences,daily routines, and desired future lifestyles and reflect that information in treatment plans.
We then compared those responses to responses about having family doctors, regular
hospitals, or regular clinics. Over one-third (35.4%) of respondents with family doctors felt
medical staff always ask for their preferences and incorporate them into treatment planscompared to 16.9% of people with regular hospitals or clinics and 12.9% of people withoutfamily doctors (Figure 10).

28

Factors preventing cooperationReasons for difficulties expressing opinions and preferences to physicians
The 334 participants who responded that they could not share or could only sometimes
share their own opinions, preferences, daily routines, or desired future lifestyles withphysicians were asked to identify the reasons they were unable to always do so. The mostfrequently-selected reason was “The doctor doesn’t ask,” which was selected by 44.0% ofparticipants. It was followed by, “I do not possess medical knowledge” (38.9%) and “I’m apoor speaker” (22.5%) (Figure 11).

29The easiest health worker to share opinions and preferences withWe asked participants to identify which healthcare worker is easiest for people receiving
healthcare to share their own thoughts or preferences with. The most popular response
was physicians, who were chosen by 61.5% of respondents. The next most common
response was nurses (17.0%), and the third most commonly-selected response was that
there are no members of medical staff that are easy to talk to, which was selected by
14.5% of all respondents (Figure 12).

The easiest health worker to share opinions and preferences with

Figure 12

Q: When you receive healthcare*, who is the easiest health worker to share your opinions, preferences, daily
routines, and desired future lifestyle with?
(March, 2020, n=1,000)

70

61.5%
60
50
40
30

17.0%

20

14.5%

10

2.6%

2.1%

1.6%

0
Doctors

NursesPharmacists* Includes during examinations at hospitals, hospitalcheck-in, and rehabilitation

Physical
Healthcare
therapists, consulants andoccupational other social
therapists
welfareworkers

0.1%

0.6%

Dieticians

Other

NobodySource: Health and Global Policy Institute, “Public Opinion Survey on Cooperation between Providers and Recipients in Healthcare.”30The current degree of cooperation between patients and medical staff
We asked respondents to what degree they thought cooperation generally takes place inhealthcare on a scale of 0% to 100%, with 0% representing no cooperation and 100%
representing full cooperation. The average score given by people with family doctors was
62.8%; people with regular hospitals or clinics gave an average score of 55.6%; and people
without family doctors assigned an average score of 52.8% (Figure 13).

31Issues preventing cooperation between patients and medical staff
When asked to identify general issues preventing cooperation, the most commonlyselected response was “There is a gap in medical knowledge,” which almost two-thirds(65.4%) of respondents selected. It was followed by “Patients are passive,” (61.5%) and“Patients cannot effectively communicate their own symptoms or preferences (referring totheir opinions, preferences, daily routines, and desired future lifestyles)” (51.5%) (Figure
14).

32



Desired future lifestyles (1): Did you have a clear awareness of what kind of life you
wanted to lead before you developed a disease?
We asked the 367 respondents with medical histories if they had a clear idea of what their
desired future lifestyle would be before developing a disease. The most popular response
was, “I mostly had no idea” which was selected by 35.7% of respondents, followed by “I
had no idea” which was selected by 34.3% of respondents, for a total of 70.0% (Figure 15).

Desired future lifestyles (1)Figure 15

Q: Before developing a disease, did you have a clear idea of what your desired future lifestyle would be if you
developed a disease?
(March, 2020, n=1,000)

80%
70%
60%
I had no idea
34.3%

50%
40%

70.0%
30%

I had a clear idea
7.9%

20%
10%

I had a somewhat
clear idea
22.1%

30.0%

I mostly had no idea
35.7%

0%
I had a clear idea
I had a somewhat clear idea

I had no idea
I mostly had no idea

Source: Health and Global Policy Institute, “Public Opinion Survey on Cooperation between Providers and Recipients in Healthcare.”33Desired future lifestyles (2): Did you tell your family or other people close to you what
your desired future lifestyle would be if you developed a disease?
We asked the 367 respondents with a medical history if they told their families or otherpeople close to them what their desired future lifestyle with a disease would be before
developing a disease. A total of 72.5% of responses were negative; the most commonlyselected answer was “I did not,” which was selected by 40.6% of respondents, followed by“I mostly did not,” which was selected by 31.9% (Figure 16).

Desired future lifestyles (2)Figure 16

Q: Before developing a disease, did you tell your family or other people close to you what your desired future
lifestyle would be if you developed a disease?
(March, 2020, n=1,000)

80%
70%
60%
I never told them
40.6%

50%
40%

72.5%
30%
20%
10%

I always told them
9.8%

I sometimes told them
17.7%

27.5%

I almost never told them
31.9%

0%
I always told them
I sometimes told them

I never told them
I almost never told them

Source: Health and Global Policy Institute, “Public Opinion Survey on Cooperation between Providers and Recipients in Healthcare.”34

CommentaryDesire to cooperate and the current situation surrounding cooperation

Our survey revealed that 92.9% of respondents want their opinions, preferences, daily
routines, and desired future lifestyles taken into account when selecting treatment plans
and medicines. However, 28.6% of respondents said that they always communicate theirown thoughts and preferences in real-world interactions with physicians while 79.0% of
respondents said they can always communicate their symptoms to medical staff, so there
was a significant gap among those who always talk about their preferences and those who
feel confident towards communicating their own symptoms.



Meanwhile, the ratio of respondents who said they always share their opinions andpreferences and who had family doctors was twice as high as those without family doctors.
Furthermore, the ratio of people with family doctors who felt that medical staff such as
physicians and nurses listen to their opinions and preferences and incorporate them into
treatment plans was approximately three times higher than people without family doctors.
We believe there is a tendency for people with family doctors to build relationships of trustwith health workers such as physicians and nurses, which helps create an environment inwhich it is easier for them to regularly talk to medical staff about illness and health.
Accordingly, this allows them to engage in good communication with medical staff, making
it easier for medical staff to grasp their opinions, feelings, and other preferences and toincorporate those preferences into treatment plans. We find it likely that this results inhigher levels of satisfaction towards treatment among that patient group because theirtreatment plans reflect their opinions and preferences.



Factors preventing cooperation
When asked about the reasons they could not share their opinions and preferences withphysicians, the top three reasons selected by respondents were all items that applied topeople receiving healthcare. The fact that the most popular reason selected was “The
doctor doesn’t ask” reveals that people receiving healthcare are over-reliant on
explanations from medical staff in clinical settings, so this passive stance results in asignificant obstacle to cooperation. The second most commonly-selected response was “I
don’t possess medical knowledge.” People receiving healthcare must independently
participate in healthcare as experts on their own bodies. We believe that insufficient
medical knowledge was frequently selected as an obstacle to cooperation because many
people do not fully recognize the need to participate in healthcare. Finally, the third mostfrequent response was, “I am a poor speaker,” which revealed that a lack of communication
35

skills among people receiving healthcare acts as an obstacle to cooperation.
Physicians were chosen as the easiest health worker to talk to. We think this was because
people have high expectations towards physicians and because physicians are theprofessionals most closely involved in medical examinations. Patients and other healthcare
beneficiaries who have not experienced hospitalizations or rehabilitation programs have
not had opportunities to interact with medical staff from various disciplines, so a moredetailed study to address this point is required.



The fact that people with family doctors rated the degree of general cooperation in clinicalsettings ten points higher than people without family doctors suggests that having a family
doctor is beneficial to cooperation. Furthermore, looking at general factors that prevent
cooperation, the top three reasons respondents felt that cooperation cannot be achieved
were that people receiving healthcare do not possess the same degree of medical expertiseas physicians, that patients are passive, and that people receiving healthcare do notpossess sufficient communication skills. Just like when we examined the reasons people
were unable to communicate their opinions to physicians, these responses highlighted thefact that a significant hurdle to cooperation is a lack of preparedness among people
receiving healthcare.

Few respondents said they had been aware of what their desired future lifestyle would be
if they developed a disease before developing one. Similarly, few respondents told those
close to them about those preferences. These responses made it clear just how difficult it
is for members of the public to be proactive about their health during the transitional MEBYO15 stage.

15

A state when people experience minor symptoms that do not qualify as the onset of a disease.

36

Survey 2: In-depth interviews(1) Survey overview

With the goal of identifying factors preventing cooperation between people receiving healthcare andmedical staff in the decision-making process in clinical settings as well as the backgrounds of thoseissues, a cultural anthropologist conducted in-depth interviews with three people receiving
healthcare in March 2020. An overview of the interview subjects is shown in Figure 17. The cultural
anthropologist conducting the interviews encouraged natural and free conversations within thecontext of each interview subject’s situation and then collected data.
Name

Age

Sex

Relationship to

Diseasepatient
Mr. A

40s

Male

Self

Cancer

Ms. B

30s

FemaleParentTuberous

sclerosis

complex
Ms. C

30s

FemaleSelf

Figure 17: In-depth interview subjects

37

Narcolepsy type 1

(2) Survey results

Key points of in-depth interview results
The interviews identified eight factors preventing cooperation between people receiving healthcare
and medical staff in the decision-making process in clinical settings. We have arranged those eightobstructing factors according to requirements described in section 3.5, “Eight requirements forcooperation in clinical settings,” as shown below. Items that were not identified during this survey
have been removed.
Subject

Requirement for#

Factors preventing cooperationcooperation
People

The ability to thinkreceiving

about one’s own

lifestyles and hopes and needs towards purpose inhealthcare

opinions andlife before developing diseases

preferences1

2

Lack of preparation in terms of desired future

Lack of information or knowledge concerning effectsof treatment on daily living

The ability to

3communicate one’s
own opinions andin an effective manner
4

preferences
Medical staff

After asking for

Unable to verbalize thoughts, worries, or concerns
Psychological hurdles towards opinion-sharing withmedical staff

5

opinions andInsufficient communication skills among medical
staff

preferences frompeople receiving
healthcare, theability to produce
treatment plans
based on that
information
The

The ability toenvironment

provide treatment

6

Medical staff face time restrictions and heavy
workloads

by multidisciplinary
teams that include

7

Team healthcare systems do not include people

people receiving

receiving healthcare and peer support systems

healthcare

involving parties like patient associations have notbeen established

38

The capacity for
regularly revisions

8

Lack of opportunities to revise decision-making
processes or to provide feedback to medical staff

to decision-making
processes after
discussions between
people receiving
healthcare andmedical staff havebeen held39

Survey results
Factors preventing cooperation related to people receiving healthcareLack of preparation in terms of desired future lifestyles and hopes and needs towards
purpose in life before developing diseases

The psychological shock people experience when first developing a disease or the suffering or pain
accompanying symptoms can be so severe there are times when they cannot spare the time or theenergy to devote to identifying the lives they want to live, their desired future lifestyles, or their
desires and needs towards a purpose in life. Therefore, it is advantageous if people receiving
healthcare think about these topics in advance, and the fact that many people do not do so was
identified as one factor that obstructs cooperation between people receiving healthcare and medical
staff.
Mr. A“Based on what my attending physician told me, I felt that I had to have surgery immediately. I did
not have time to think about my own wishes or my future living situation. Therefore, I felt that it
would have been better if I had knowledge about cancer before developing symptoms, or instead ofknowledge about cancer, it would have been good to know stories from people who had cancer.”

Lack of information or knowledge concerning effects of treatment on daily living

In addition to evidence based on medical science, knowledge concerning the effects of treatment on
daily living or troubles faced in daily living during the process of balancing treatment and everyday
living is beneficial to people receiving healthcare. Another issue identified was a lack of suchknowledge during decision-making. However, it is sometimes difficult for people to access thesetypes of information, and even if they can, it can be difficult for them to form an accurate mental
image of daily life during and after treatment. Additionally, there may be scenarios when people
require welfare services in addition to healthcare, particularly when there are comorbid physical or
psychological disorders, but there have been cases when people could not obtain detailed
information on welfare services at healthcare institutions.

40Ms. B“I could find information on topics related to medical science like objective clinical symptoms, theconditions for a confirmed diagnosis, disease progression, and treatment methods, but I could not
find anything that gave me insight on everyday living, such as the real-world circumstances related
to how children with this disease are living their everyday lives.
“(No matter where I went,) I could not obtain information on welfare in my city. Our hospital services
a wide area, but the social workers there did not know about welfare for people with disabilities in
the region we live in (because it is not within the scope of healthcare). I first learned of the existenceof employment support offices for people with disabilities from other parents raising children withdisabilities. My child is under ten years old and I do not know where and how children with disabilities
live after they grow up, which is one source of concern for me.”

Unable to verbalize thoughts, worries, or concerns in an effective manner

There are aspects of verbalizing one’s own thoughts and worries that people receiving healthcare
find difficult. Our interviews mentioned examples of times medical staff helped people receiving
healthcare verbalize their thoughts by working more closely with them.
Ms. C“I can’t identify problems on my own, but there are problems in my daily life. I am certain that there
are some sorts of problems, but I just cannot figure out what they are. So, there are often times that
I can’t look for a goal, or when I don’t know where to go.
“(My family doctor) recommended I write things down, like in an itemized list, and that I bring thatlist to the medical examination. The medical staff worked more closely with me and that also made iteasier for me to talk.”41



Psychological hurdles towards opinion-sharing with medical staff

Another factor mentioned during the in-depth interviews was that people receiving healthcare may
face psychological hurdles that prevent them from communicating their own thoughts to medical
staff. In our interviews, there were some cases in which people receiving healthcare wanted to share
their thoughts with medical staff, but they thought doing so would increase the burden placed on
medical staff, so they withheld from speaking.
Ms. C“I don’t know the best way to share (my own opinions or preferences), and I worry that I will becausing trouble for the medical staff, or in other words, because an answer might not become clear
during the time I have with the doctor, I sometimes worry that I will be causing trouble for the doctor.”42

Factors related to medical staff
Insufficient communication skills among medical staff

One reason medical staff cannot get people receiving healthcare to sufficiently express their needs
or preferences mentioned during the interviews was a lack of communication skills among medical
staff.
Mr. A“I want both physicians and nurses to talk to patients more. I have things to say that I want them tohear. While there are some patients who can speak up and share their thoughts without hesitation,
there are some people who cannot. Medical staff who can always approach disease while skillfully
drawing out patients’ opinions or their way of thinking are ideal.”

Factors related to the environmentMedical staff have limited time and heavy workloads

Generally speaking, increasing the number of patients assigned to each health worker shortens theamount of time they have for one-on-one communication. When physicians have limited time to
conduct medical examinations, it may result in situations when people receiving healthcare are notable to communicate their individual opinions, desires, and needs, or may cause them to hesitate
when they have the opportunity to do so.
Mr. A“The nurse told me if I was in pain, then do not hesitate to say so. But watching the nurse work, it
seemed like they were shorthanded or they were too busy, so in the end, I could not bring myself to
say anything.”Team healthcare systems do not include people receiving healthcare and peer support
systems involving parties like patient associations have not been established

Another factor identified during interviews was when information provided by people receiving
healthcare is not shared among medical staff, which prevents treatment teams from functioning
effectively as teams. It was also pointed out that people receiving healthcare feel alienated if they
are not included on treatment teams. Another necessity that was mentioned was the need for peer
support in which people receiving healthcare can hear first-hand accounts from people in similar
situations or receive psychological support through patient associations.

43

Cases in which treatment teams did not function effectively as teams
Ms. B“(Over three years, our attending physician frequently) changed, and every time they changed, I tolda different doctor the same story. Although I could tell they were handing over my child’s treatment
carefully, looking back on those times, I was discouraged because I did not have anyone to share andsympathize with. Although everything is handed over in the medical record, . . . I realized that it isdifficult to continue staying at a hospital where the organization is constantly shifting.”
Ms. C“My doctor always changes, and every time, they ask the same questions – “How are you doing?” –and I give them the same replies. Although maybe it would actually be better if I explained in detail,when I think that my doctor will just change again, I am left with the strong feeling that there is no
point in sharing in the first place.”
Mr. A“Because each patient is assigned an attending physician, a nurse, a pharmacist, and a dietician, I
can see they are providing team treatment. But, when I could not eat properly and asked the nurse to
substitute the rice for noodles, the nurse said, “Okay, I’ll tell the dietician to do that,” but I was stillserved rice every day for two or three days.”Cases in which the people receiving healthcare were not included on treatment teams
Mr. A“An attending physician, a nurse, a pharmacist, and a dietician are all present and I could see thatthey provide treatment to the same patient as a team, I felt that the patient exists outside of the circleof team medicine.”
Ms. B“I think feelings of unity and motivation among treatment teams change depending on whether or
not they feel the presence of the person receiving treatment as a member of the team.”
Cases in which people felt peer support systems such as those including patient organizations werenecessary
Ms. C“Although there are (events for people affected by intractable diseases to meet called) Nanbyo Cafes
and similar events, they are relatively unknown or are difficult to attend. I think it would be nice if
there were places for patients to drop in for a chat during hospital visits or similar times.”44

Mr. A“(At patient associations or events,) there are many participants who enthusiastically talk about theirown experiences, and I was able to openly share the types of stories I usually cannot share and hearother people’s stories. Because I was the only person receiving treatment during my treatment
experience, I thought I was the only one who was going through hard, painful, or stressful times.
Many of the people who come to events like that are good people, and there were many people who
I completely fit with in terms of motivation or feelings, so the sense that I was not alone grew stronger
and stronger.”

Lack of opportunities to revise decision-making processes or to provide feedback to
medical staff

Clinical settings, particularly the inside of examination rooms, can easily make people receiving
healthcare feel psychological pressure. Therefore, even when they feel medical staff are being
thoughtful or understanding of their issues during communication, it can be difficult for them to put
their feelings in order or to attain the peace of mind needed to actually communicate those feelings.
This difficulty was identified as an obstacle to cooperation. As described above, we believe this isrelated to the fact that medical staff are overworked and have limited time to spend with each patient.
Ms. C“There are people who can understand what medical staff told them if they take the time to thinkcarefully and go over it in their head, but cannot speak well during the actual conversation.”
Mr. A“When you are discharged after completing treatment and only visit the hospital once every six
months, you do not have any chances to talk to the nurses working in the ward where you were
hospitalized. You might only get to talk to your attending physician once every six months, and only
at predetermined times, and you can tell they are busy just by looking. . . . I always think it would benice if there were healthcare meetings or something similar to provide patients opportunities to give
feedback (after treatments are completed) within the hospital, not necessarily during medical
examinations and similar times.”45

4.3 Observations on the results of both surveys
Conducting the two surveys described in the previous sections allowed us to obtain a clear picture of
the general situation surrounding cooperation between people receiving healthcare and medical staff
as well as factors preventing cooperation. Below, we have collected our observations based on the
results of the two surveys.
(1) The current situation surrounding cooperation in clinical settings
The results of the public opinion survey revealed that over 90% of respondents wanted their opinions
or preferences taken into account when selecting treatment plans or medicines. On the other hand,when asked about their ability to communicate these opinions or preferences to medical staff, their
behaviour patterns fell into one of three patterns: taking initiative and engaging, waiting for the rightsituation to engage, or not engaging out of their own initiative. Fewer than 30% of respondents said
they regularly take initiative and engage, about 40% of respondents were dependent on the situation
if they engaged or not, while the remaining group, over 30%, was unable to take initiative and engage.
Even though selecting treatment plans and medicines are important opportunities for people
receiving healthcare to engage in decision-making, there was a split in their behaviour patterns, andbased on that fact, we can say there is an apparent mismatch between their desire for cooperation
and real-world circumstances surrounding cooperation.
(2) Factors preventing cooperation between people receiving healthcare and medical staff in thedecision-making process in clinical settings
The results of the in-depth interviews revealed eight obstructing factors that prevent cooperation
between people receiving healthcare and medical staff in clinical settings. Categorizing those
obstruction factors by their causes reveals insufficiencies in three areas: insufficient empowermentof people receiving healthcare, insufficient cooperation skills from partners, and insufficient
preparation of the environment.
“Insufficient empowerment of people receiving healthcare” originates from the inability of people
receiving healthcare to determine or communicate their opinions and preferences when interactingwith medical staff. When someone develops a disease and is undergoing one test or treatment after
another, it is often the case that the time constraints and psychological burdens accompanying thosecontinuous tests and treatments leave them no room to consider their desired future lifestyle.
Therefore, it is desirable that people think about what kind of life they want to lead in the event they
develop a disease and prepare in advance. However, the results of the public opinion survey showedthat only 30% of respondents had actually thought about their desired future lifestyles before
developing a disease, so it is likely that many people were engaged in decision-making during46

treatment without having made advance preparations before developing any symptoms. Additionally,
insufficient information or knowledge about the effects of treatment on daily living was a significant
obstacle that prevented people receiving healthcare from engaging in the act of thinking. Lacking
information and knowledge on topics like how to choose the best treatment plan for one’s own
beliefs or lifestyle among a number of options or how to balance treatment and everyday living in
the future makes it more difficult for people receiving healthcare to think about their own opinions
or preferences.
A lack of health literacy or knowledge concerning diseases and healthcare is another reason people
are unable to communicate their opinions or preferences. Past studies have shown that Japanesepeople tend to possess a lower degree of health literacy than people from other countries.16 It isabsolutely essential to improve health literacy to overcome the issues identified by the in-depth
interviews, namely insufficient verbal skills, psychological hurdles people feel when trying tocommunicate their thoughts to physicians, and the fact that “patients are passive” (which was named
as a factor obstructing cooperation by 61.5% of public opinion survey respondents). Measures toempower people receiving healthcare that draw out and boost the inherent latent abilities possessedby individuals and organizations are needed to improve health literacy. These measures include
implementing health education, popularizing tools to support decision-making in healthcare or forcommunicating with medical staff, and establishing systems to provide accurate information about
diseases and health.
The second obstructing factor, “insufficient cooperation skills from partners,” refers to insufficient
communication skills among medical staff, who are partners in decision-making, or to the absence ofpartners who are easy to consult. A paradigm shift is currently underway in which the relationshipbetween medical staff and people receiving healthcare is starting to be based on informed consent17
rather than paternalism. 18 Awareness and behavior among healthcare providers are changing toallow people receiving healthcare and medical staff to engage in Shared Decision Making (SDM),19 inwhich people receiving healthcare share decision-making duties with medical staff. However, people
receiving healthcare currently feel there is a substantial gap between ideals and reality when it comes

16

Kazuhiro Nakayama, Wakako Osaka, Taisuke Togari, Hirono Ishikawa, Yuki Yonekura, Ai Sekido & Masayoshi
Matsumoto (2015), “Comprehensive health literacy in Japan is lower than in Europe: a validated Japanese-language
assessment of health literacy”
17 A concept in which patients agree with and provide voluntary consent to treatments after having received
satisfactory explanations (including written explanations) from health workers.
18 Paternalism: An attitude in which people in stronger positions (medical staff) interfere or intervene beyond thedesires and preferences of people in weaker positions (people receiving healthcare), believing that it is for the
weaker party’s own good.
19 The act of making decisions in healthcare by sharing information and holding conversations between healthcare
recipients and medical staff.

47

to communication with medical staff. That gap was visible in the results of the public opinion survey
and in-depth interviews. Furthermore, according to hearings conducted by NCD Alliance Japan withmedical staff and organizations providing support to people receiving healthcare, even when medical
staff believe they sufficiently explained treatment plans, their patients are unable to understandtechnical terminology used in such explanations, causing some patients to be left with the impressionthat they did not receive a sufficient explanation. We believe that medical staff can be more effective
partners in cooperation and that cooperation with people receiving healthcare will be accelerated if
training that provides specific communication methods and readiness or education that emphasizes
SDM is implemented into the training processes for every discipline. Also, the ratio of respondents inthe public opinion survey who said they feel that medical staff incorporate the opinions andpreferences of patients in treatment plans was 59.9% among people without family doctors and87.8% for people with family doctors. This result demonstrates that the presence of a trustworthy
partner is absolutely essential for cooperation.
Factors related to “insufficient preparation of the environment,” the third obstacle to cooperation,
include lack of time among medical staff, insufficient team medicine systems, patients focusing their
expectations only on physicians or their roles, and lack of opportunities to review decision-making
processes and provide feedback to medical staff. In our interviews, there were cases when interview
subjects thought that there are times when the opinions of people receiving healthcare are notshared among treatment teams if they tell them to medical staff other than physicians. In addition toteam treatment systems, we also understood that patient associations or peer supporters playsignificant roles in supporting people receiving healthcare. It was also pointed out that one reason
physicians face time constraints is because they are relied up upon to play multiple roles in providingcare. This is another reason it is necessary to establish team treatment systems that include people
receiving healthcare on treatment teams. To improve feedback for medical staff, first it is necessary
to prepare opportunities for feedback at appropriate times because there are few opportunities to
do so. Also, when people receiving healthcare obtain a sufficient understanding of the explanations
they are given, it is important for health workers to confirm and review whether or not healthcare
recipients had opinions or thoughts that they wanted to communicate but were unable to.
Additionally, we believe that these types of opportunities to provide feedback will allow healthcare
providers to notice new issues related to communication or care systems. In this manner, in addition
to changes in awareness among people receiving healthcare and medical staff, it is necessary to
implement significant reforms to the care environment itself including systems that promote
cooperation to achieve cooperation in clinical settings and to ensure systems promoting cooperation
are sustainable.

48

Four perspectives for achieving a flat healthcare system and examples of specific actions foreach stakeholder to take
Our study identified three issues preventing cooperation in clinical settings: insufficient
empowerment of people receiving healthcare, insufficient cooperation skills from partners, andinsufficient preparation of the environment. To solve these three issues, to promote cooperation inclinical settings, and to achieve the creation of a flat healthcare system, we have compiled a list of
specific actions for each stakeholder to take from the four perspectives described below.
Perspective 1: Empower people receiving healthcare
Perspective 2: Emphasize communication when training medical staff
Perspective 3: Build systems to support decision-making among people receiving healthcare for
topics related to health and healthcare
Perspective 4: Establish cooperative systems for the entire life course
5.1 Perspective 1: Empower people receiving healthcare(1) Provide health education that includes information on diseases and health, how to select theright healthcare institutions and the best times to visit them, how to make the most out of visits
to healthcare institutions, and other such information.
For people receiving healthcare to be able to communicate their opinions and preferences withmedical staff and engage in decision-making in a manner that they can consent to, it is important forevery person receiving healthcare to improve their health literacy before developing diseases.
Health education within the school education process is important for improving health literacy. In
recent years, in the field of cancer, the third-term Basic Plan to Promote Cancer Control Programs(FY2017-FY2022) which was formulated according to the Cancer Control Act states, “After graspingnationwide implementation status for cancer education programs, the Government will establish
systems to deploy counsellors and make efforts to improve cancer education according to thesituations in each region.” As a result, new educational measures were added to curriculum
guidelines for both junior and senior high schools to be implemented in FY2021 and FY2022.
Furthermore, the new curriculum guidelines for elementary schools to be implemented in FY2020
also now address cancer. A report published by the Ministry of Education, Culture, Sports, Scienceand Technology (MEXT) Investigation Committee for Cancer Education (established March 2015)20
stated, “Cancer education must not only intend to address cancer as a separate topic from other

20

MEXT, 2015. “Report on the State of Cancer Education in Schools.”
https://www.mext.go.jp/a_menu/kenko/hoken/__icsFiles/afieldfile/2016/04/22/1369993_1_1.pdf. Last retrieved
July 17, 2020.

49

diseases. Rather, it must enhance health education by addressing topics related to cancer that will bebeneficial for preventing various other diseases and encourage the establishment of desirable
lifestyle habits.”
In this manner, education that promotes desirable lifestyle habits for NCDs is advancing with cancer
education as a starting point. However, curriculum guidelines make no mention of how to effectively
use healthcare institutions or the ideal methods for communicating with medical staff, so there aremany people who only learn how to use healthcare institutions or interact with medical staff when
they notice something out of the ordinary with their body or mind or with the body or mind of afamily member. There are countries in which education on decision-making in healthcare and similar
topics is provided alongside education on diseases and daily lifestyle habits starting in elementaryand middle school education. For example, in the U.S., the Center for Disease Control and Prevention(CDC) established the National Health Education Standards (NHES) 21 with the aim of improving
health literacy among young people. Many states are starting to provide education on concepts like
communicating with medical staff or decision-making in addition to diseases, daily lifestyle habits,
and other such topics starting from the early years of elementary school based on the guidelines
provided by the NHES. While referring to such examples from abroad, education on the effective useof healthcare institutions and similar topics should be implemented into educational curriculums atelementary and middle schools in Japan.
Looking to areas other than school education, educational opportunities should be provided to the
public throughout the life course through measures like promoting health education among
employees at each company and organization or providing lifetime education in each municipality.
Before that can happen, however, the ability of members of the public to think about their own lives
and deaths is an important perspective for improving health literacy among the public. Efforts should
be made to increase awareness and deepen understanding towards life, death, and otherphilosophical topics.
(2) Verify and support trustworthy medical information websites so people can access accurate
medical information.
The hearings we conducted as part of this study pointed out that because it has become possible toobtain vast amounts of information using the internet, there are cases in which people simply believe
incorrect healthcare information they found online. This can result in them failing to take appropriate

21

CDC, “National Health Education Standards” https://www.cdc.gov/healthyschools/sher/standards/index.htm.
Last retrieved July 3, 2020.

50

health seeking behavior. It will be necessary to establish an environment in which all people canobtain accurate medical information moving forward. The Ministry of Health, Labour and Welfare(MHLW) established the Roundtable on Promoting Skillful Interactions with Healthcare in FY2018,
which presented the “Citizens Project Declaration on Protecting Lives and Healthcare.”22 Within thatdeclaration, an example of a specific action for the Government to take was to verify and support
trustworthy healthcare information websites. In the future, the concept behind this effort, thecontent of its activities, and other such information should be widely disseminated and its effects
should be verified.
(3) Promote the development of decision aids and other decision-making guides as well as theeffective use of existing tools.
Tools that teach people receiving healthcare specific methods for navigating the decision-making
process in healthcare and enable smooth communication with medical staff should be developed anddisseminated. In one example from the U.S., a campaign called “Ask Me 3”23 simplified the questions
people receiving healthcare should ask medical staff in the examination room down to three key
questions (1. What is my main problem? 2. What do I need to do? 3. Why is it important for me to do
this?). Posters, pamphlets, and other tools were then used to build awareness towards these threequestions among people receiving healthcare. In Japan, an NPO called Consumer Organization for
Medicine and Law (COML) created a pamphlet called the “New Ten Articles for Doctors,” 24 andacademic societies in certain disease fields such as breast cancer and dementia have formulated
decision-making guidelines. In the future, all academic societies and similar organizations in every
disease field should consider developing decision-making guidelines and other tools. Then, those
tools and decision-making guidelines should be distributed to or placed at all healthcare institutions
to provide information to people receiving healthcare. At the same time, healthcare institutions
should collaborate with related academic societies to conduct training for medical staff based on
those tools or guidelines. Systems that provide appropriate decision-making support should beestablished moving forward.

22

MHLW, 2018. “The Protect Our Lives, Protect Our Healthcare! Citizens Project Declaration.”
https://www.mhlw.go.jp/content/10800000/000458856.pdf. Last retrieved June 25, 2020.
23

Institute for Healthcare Improvement. “Ask Me 3: Good Questions for Your Good Health.”

http://www.ihi.org/resources/Pages/Tools/Ask-Me-3-Good-Questions-for-Your-Good-Health.aspx. Last retrieved July17, 2020.
24

COML. “The New Ten Articles for Doctors.” https://www.coml.gr.jp/shoseki-hanbai/10kajo.html. Last retrieved July17, 2020.

51

Examples of specific actions to take for perspective 1:
Specific actions for each stakeholder to take for perspective 1 are described below.
Members of the public (including people receiving healthcare) should:

Use trustworthy sites when looking up medical information.

Think about their preferred types of healthcare and future lifestyles before developing
diseases and create opportunities to communicate those preferences to family members andsupporters.



Make time to think about how to select the most fitting healthcare institutions and visit times
and how to make the most of those visits. Use decision-making guides and similar tools when
doing so.

The Government should:Implement educational programs at elementary and middle schools that teach students about
topics like how to select and use healthcare institutions or the best methods ofcommunicating with medical staff in addition to providing them with information on diseases,
healthy lifestyle habits, and similar knowledge.

Engage in efforts to promote health education and provide accurate medical information somembers of the public can access information on and think about decision-making for topics
related to healthcare and health before developing diseases.

Help disseminate decision aids and other decision-making guides that foster cooperation
between medical staff and people receiving healthcare.

Medical staff should:Conduct training within healthcare institutions using decision aids and other decision-making
guides and tools developed by academic societies.

The private sector (including companies and organizations) should:
Promote awareness-building and educational programs for improving health literacy among
employees and make efforts to implement working-style reform and help employees manage
their health.

525.2 Perspective 2: Emphasize communication when training medical staff(1) Implement education and training programs that emphasize communication and Shared
Decision Making (SDM) in educational processes for all disciplines.
While promoting awareness-building and educational support among people receiving healthcare,healthcare providers must be given training that emphasizes SDM or that teaches specific methods
for communicating with people receiving healthcare and that develops attitudes for that purpose.
Healthcare institutions provide care to patients based on multidisciplinary expert knowledge andexperience possessed by each member of medical staff including nurses, pharmacists, clinicalengineers, physical therapists, occupational therapists, social workers, and office staff. In order foreach member of medical staff to be able to act as a partner in cooperation, education that meets theunique characteristics and roles of each discipline must be implemented within the training processes
for each discipline.
One effort in the field of cancer undertaken to “research and develop support programs for improving
QOL for patients in all disease fields” as part of the Third Term Comprehensive 10-Year Strategy forCancer Program was the development of the SHARE-CST program.25 The SHARE-CST program aims
to help physicians obtain communication skills according to the SHARE mode and is was based on the“Study on Communication Between Patients and Physicians in Cancer Treatment” conducted by the
National Cancer Center Japan Psycho-oncology Group. The SHARE-CST Program is conducted throughcommunication skills training workshops that are jointly operated by the Japan Psycho-oncology
Society and the Japanese Society for Palliative Medicine. These workshops aim to improve the qualityof communication between patients and physicians during cancer treatment. Their emphasis on
promoting cooperation in treatment is particularly noteworthy. Currently, participation in thisprogram is voluntary, so participants tend to already possess a high degree of awareness towards theimportance of communication. As such, it is difficult to reach the physicians who truly need training
on communication. In the future, programs like the SHARE-CST Program should be developed forfields other than cancer. Participation in those programs or other such communication training
programs should be required in the educational process for each medical discipline.
(2) Train family doctors and general practitioners and promote their placement in every region.
In the public opinion survey conducted as part of this study, people with family doctors indicated thatthey felt cooperation in clinical settings was being achieved to a higher degree compared to people
without family doctors. The presence of family doctors and general practitioners who can respond to
everyday medical needs is an important element for achieving cooperation, and measures to train

25

Japan Psycho-oncology Society. http://www.share-cst.jp/02.html. Last retrieved July 17, 2020.

53

general practitioners who can provide holistic, continuous care as family doctors or primary care
physicians26 as well as measures to ensure their placement in every region should be advanced.
When doing so, it is important to clearly indicate cooperation as one of the priorities within thefunction and role of family doctors and to provide training or information to that end. The “Basic
Policies on Economic and Fiscal Management and Reform 2020”27 also mentions the placement offamily doctors nationwide, saying “While promoting the differentiation of functions and cooperation
between hospitals and clinics and taking the needs of the primary care functions into account,promote the use of family doctors, family dentists, and family pharmacists.” Also, healthcare
institutions providing the functions associated with family doctors are reimbursed in the medical
service fee schedule through the Comprehensive Community Care Premium and other suchpremiums. Meanwhile, a public awareness survey conducted by the Japan Medical Association
Research Institution28 found that 43.5% of respondents did not have family doctors. Also, in a survey
conducted by the National Federation of Health Insurance Societies,29 32.7% of respondents said
that they do not have a doctor or healthcare institution they regularly visit for examinations, and27.2% of all respondents said that they do not have family doctors. So, 30% to 40% of respondents inboth surveys said they do not have family doctors or healthcare institutions they regularly visit.
Among the reasons given, some said that they did not know how to find the right healthcare facilities,
so at the same time as providing incentives to healthcare institutions, we believe it is also necessary
to take measures to provide information to people receiving healthcare. In light of these issues, a
new condition was added to the FY2020 revision of the medical service fee schedule which requires
institutions providing family doctor services to engage in efforts to provide information about thoseservices to patients through on-site bulletins and other notifications to qualify for premiums used toevaluate institutions providing family doctor services. To provide information to even more people in
the future, each municipality or insurer should consider engaging in efforts to provide information
about family doctor services in addition to the information already being provided within healthcare
institutions. Furthermore, members of the general public including patients and other parties mostaffected should have family doctors with whom they can share their own preferences towards
healthcare or their desired future lifestyles. They should also recognize the importance of effectively
using information regarding health from their family doctor when making healthcare choices.

26

Physicians who can treat most health-related problems, build ongoing partnerships, and be responsible forproviding care within the family and community framework.
27 Basic Policies on Economic and Fiscal Management and Reform 2020. https://www5.cao.go.jp/keizaishimon/kaigi/cabinet/2020/2020_basicpolicies_ja.pdf. Last retrieved July 17, 2020.
28 Japan Medical Association Research Institution, 2017. “The 6th Public Awareness Survey on Healthcare in Japan.”https://www.jmari.med.or.jp/download/WP384.pdf. Last retrieved July 17, 2020.
29 National Federation of Health Insurance Societies, 2017. “Survey on Public Awareness towards Healthcare and
Health Insurance Systems.” https://www.kenporen.com/include/press/2017/20170925_7.pdf. Last retrieved July 17,
2020.

54

Examples of specific actions to take for perspective 2:
Specific actions for each stakeholder to take for perspective 2 are described below.
Members of the public (including people receiving healthcare) should:Find family doctors with whom they can share their healthcare preferences and desired future
lifestyles.

The Government should:

Establish systems to support decision-making among people receiving healthcare withmultidisciplinary cooperation, starting with family doctors and general practitioners.



While cooperating with healthcare institutions and insurers, examine the best methods forproviding information to the public on healthcare institutions that provide family doctor services.



Recognize the need for communication between people receiving healthcare and medical staff
and SDM in clinical settings and provide leadership in efforts to provide training on
communication and SDM to all medical staff.

Provide financial assistance for developing programs and constructing guidelines that effectively
teach communication and SDM methods.

Medical staff should:Consider requiring communication training programs to be included in educational programs for
specialist doctors.

Proactively participate in training programs on communication and SDM.

55

5.3 Perspective 3: Build systems to support decision-making among people receiving healthcare for
topics related to health and healthcare(1) Establish counselling support systems within healthcare institutions.
Over the course of the decision-making process, people may experience changes in theirrelationships with other people. This can cause their psychological burden to increase, so systems
that allow people receiving healthcare to receive decision-making support or consultation support
must be established. One tool for decision-making support at healthcare institutions are theconsultation offices established at every institution. When people receiving healthcare experience
unease towards care or daily living, being able to access immediate counselling at the healthcare
institutions they are commuting to or hospitalized in can help them gain peace of mind. The FY2012
revision of the medical service fee schedule added a new premium called the Patient Support System
Improvement Premium. Healthcare institutions must establish consultation support offices that
promote conversations between medical staff and patients to be eligible for the Patient Support
System Improvement Premium. Since it was added, efforts to establish consultation offices withinevery institution have advanced. According to materials shared at the 377th General Meeting of theCentral Social Insurance Medical Council,30 approximately 4,700 healthcare institutions had applied
for the Patient Support System Improvement Premium, and both the number of applications and thenumber of healthcare institutions applying for them is trending upwards. Furthermore, according a
special study conducted to verify the effects of the FY2012 revision of the medical service feeschedule called the “Impact Study on Evaluations for Healthcare Safety Countermeasures or Patient
Support Systems,” 31 approximately 30% of the people who used consultation offices were
undergoing outpatient treatment and the number of such consultations is trending upwards. The
content of consultations provided to people receiving outpatient treatment covers many topics; inaddition to treatment methods and psychological unease, users are able to receive consultation on
topics like systems and support services that can be used to help them continue treatment. Therefore,
it is necessary to link these services with public welfare or health and welfare institutions. However,the Patient Support System Improvement Premium is only disbursed when hospitalized people areprovided support, and there is no medical fee reimbursement for healthcare institutions to receive
when they provide consultation support services to people receiving outpatient treatment.
Furthermore, according to expert hearings conducted for this proposal, the Patient Support System
Improvement Premium does not provide enough funding to cover the costs associated with30

377th General Meeting of the Central Social Insurance Medical Council materials.
https://www.mhlw.go.jp/file/05-Shingikai-12404000-Hokenkyoku-Iryouka/0000187304.pdf Last retrieved July 17,
2020.
31 From materials shared at the38th Session of the Central Social Insurance Medical Council’s Subcommittee on
Verifying Medical Service Fee Revision Results. https://www.mhlw.go.jp/file/05-Shingikai-12404000-HokenkyokuIryouka/0000025689.pdf Last retrieved July 17, 2020.

56

establishing consultation offices, including personnel expenses, so the current system places asignificant burden on healthcare institutions. In the future, it will be necessary to consider the best
way to reimburse healthcare institutions providing consultation support to people receiving
outpatient treatment so that said systems can be built. For example, users of consultation support
systems could be required to shoulder a small portion of the financial burden associated with
providing support.
Other items that were raised on the topic of on-site consultation support offices is that there is aclear variation in the quality of consultation support and in the number of consultations provided
among healthcare facilities. The Patient Support System Improvement Premium requires that people
responsible for providing counselling are placed at on-site consultation support offices, but it allows
for a wide range of acceptable disciplines. So, even people without professional healthcare
qualifications such as those possessed by physicians, nurses, pharmacists, or social workers can beplaced in charge of such offices if they meet certain requirements. Specifically, their past experience
requirements are “One or more years of conducting tasks related to patient support,” “Has provided
20 or more patient consultations,” and “Possesses applicable experience conducting activities related
to patient support (such as participating in workshops or having served as workshop instructors) in
hospitals.” They must also have 20 or more hours of training from organizations that meet standards32
defined in the MHLW’s “Operational and Training Program Creation Guidelines for Promoters of
Dialogue in Healthcare.”33 The conditions to receive reimbursement listed in the medical service feeschedule say that it is preferable that such parties have completed the training required of qualified
medical personnel,34 but it is not a requirement. From the perspective of standardizing the qualityof consultation support services in the future, measures to reform consultation support systems
should be considered. Such reforms might include requiring all full-time employees responsible forproviding those services to undergo training or defining new indicators to be used as conditions toqualify for premiums (such as the ratio of consultations provided to the number of patients
hospitalized) to track the number of consultations provided more accurately.
In the field of cancer, the Basic Plan to Promote Cancer Control Programs that was established based

32

MHLW, 2018. Health Insurance Bureau, Health Care Division, “Notes on the Sending of Materials for Resolving
Doubts, Item 7.” https://www.mhlw.go.jp/file/06-Seisakujouhou-12400000-Hokenkyoku/0000136971.pdf. Last
retrieved August 25, 2020.
33 MHLW, 2013. HPB Notification No. 0110-2 from the Director of the General Affairs Division, Health Policy Bureau.
“Operational and Training Program Creation Guidelines for Promoters of Dialogue in Healthcare – Developing a
Culture of Explanation and Dialogue.” https://www.mhlw.go.jp/topics/bukyoku/isei/i-anzen/hourei/dl/1301102.pdf. Last retrieved August 25, 2020.
34 MHLW, 2018. Health Insurance Bureau, Health Care Division, “Notes on the Sending of Materials for Resolving
Doubts, Item 12.” https://www.mhlw.go.jp/file/06-Seisakujouhou-12400000-Hokenkyoku/0000136971.pdf. Last
retrieved August 25, 2020.

57

on the Cancer Control Act clearly positions the establishment of consultation systems as a priority
policy. After the Comprehensive Cancer Consultation Project was established in 2011, Regional
Consultation Centers have been established in 14 prefectures based on cooperation with healthcare
institutions, so advancements in the creation of consultation systems have been made. Moving
forward, systems that allow all PLWNCDs and their family members to receive consultation support
must be established for every NCD including cancer.
(2) Gather evidence and create quality standards to promote the effective use of peer support.
Peer support occurs when people who have undergone treatment for a disease or disability provide
psychological support to other people, including patients or their family members, based on theirown experiences. In addition to sharing stories of their own experiences, they might also provide
advice on topics like the best ways of selecting and visiting healthcare institutions and other facilities
or how to use support systems. The people who provide peer support are not only on the receiving
end of healthcare services, they also become providers of services supporting other people. This
provides a clear example of cooperation and we anticipate further efforts to make effective use ofpeer support in the future. During the in-depth reviews conducted for this proposal, someinterviewees shared examples of their psychological burden being lightened through peer support.
There were also examples in which taking part in activities at patient organizations gave interviewees
opportunities to consider the effects various treatment methods have on daily living. At the sametime, there have been cases in which providing peer support resulted in greater psychological burden
among supporters. In addition, the quality of peer support may vary, meaning there are times whenpeers cannot provide effective support, so there are lingering issues that must be addressed as efforts
to popularize peer support are advanced.
In the field of cancer, the second-term Basic Plan to Promote Cancer Control Programs enacted in2012 says “The Government, local public organizations, and other such organizations will promote
cooperation involving both people with cancer and people who have experienced cancer and will
make efforts to improve peer support, such as by implementing training programs to promote peer
support.” However, the FY2016 survey35 conducted by the Ministry of Internal Affairs revealed that
7 of the 17 regions surveyed had not implemented peer support training programs. Furthermore,among the 38 core hospitals located within the 12 regions that had implemented peer support
training programs, 10 of them had no records of peer supporter activities. Reasons for not doing so
included, “The Government does not have a system to publicly certify peer supporters, making the35

Ministry of Internal Affairs, 2016. “Recommendations Based on Results of Evaluation on Administration andMonitoring of Cancer Measures Focusing on Early Detection, Treatment, and Palliative Care.”https://www.soumu.go.jp/menu_news/s-news/107650.html. Last retrieved July 15, 2020.

58

degree to which each organization’s peer supporters can provide consultations unclear, so thecurrent conditions do not allow us to accept peer supporters,” or, “We do not have response
guidelines for when trouble occurs between patients.” In response, the MHLW is making efforts toimprove this situation by preparing peer supporter training programs and training program content
in a balanced manner through research projects and similar measures. In the future, to improve thesituation surrounding the use of peer support in every disease field in addition to the field of cancer,
it will be necessary to establish evidence through verification studies to identify and collect bestpractices and more effective methods of peer support. Furthermore, the quality of peer supportshould be standardized by creating training programs based on the aforementioned evidence and by
evaluating and certifying peer supporters who have received sufficient training.
(3) Make effective use of information technology (IT) to share information between people
receiving healthcare and medical staff.
Measures should be taken that promote the effective use of tools that help overcome issues related
to lack of time during medical examinations or the psychological hurdles that people receiving
healthcare may feel towards medical staff. Such tools include online medical examinations, treatment
apps, and tools that allow for people receiving healthcare and medical staff to share information.
One potential cause of psychological hurdles for people receiving healthcare is the uniqueatmosphere that exists within hospital examination rooms. If online medical examinations become
more widespread, it will lower psychological burdens for people receiving healthcare and create
opportunities for them to express their opinions and needs to medical staff. Interest towards online
examinations is growing and, on April 10, 2020, it became possible for initial medical examinations
to be provided online as a limited measure for responding to the spread of COVID-19. While referring
to examples from abroad, it will be necessary to gather and build evidence for online examinations
from the point of view of people receiving healthcare moving forward, such as by asking people whohave used online medical examinations how they feel about the experience and what sorts of effects
it had on them.
The effective use of tools for sharing information between people receiving healthcare and medical
staff has the potential to serve as one method for overcoming the issue of short examination times.
We heard about an example of one such tool during hearings we conducted with people withhemophilia. They told us about their use of a digital application that allowed them to record causesof concern they felt towards medical examinations together with their injection records, which werethen shared with medical staff. They reported that the app made their examinations more efficientand created more time for communication. Programs such as those used in diagnosis or treatmentthat are added to medical devices were included within medical devices by the 2014 revision of the59

Act on Securing Quality, Efficacy and Safety of Products Including Pharmaceuticals and Medical
Devices. The development of treatment methods using such apps is advancing in certain fields likesmoking cessation or high blood pressure, where they improve the efficiency of medical examinations.
Behavior modification (such as changes in diet or exercise habits or prescription management) among
PLWNCDs is an important tool for treating NCDs. Providing tools that allow people to receive detailed
support even outside of examination hours can lead to healthcare provision that is more effective
and more efficient. Moving forward, the development of treatment apps and tools that allow people
receiving healthcare to share information with medical staff should be promoted throughcooperation between the public and private sectors to benefit people in all disease fields.
Examples of specific actions to take for perspective 3:
Specific actions for each stakeholder to take for perspective 3 are described below.
Members of the public (including people receiving healthcare) should:

Develop an interest in building networks and forming communities among people receiving
healthcare and seek decision-making support for topics related to health or healthcare.



Cooperate with academia, medical staff, and the Government in efforts to build evidence for
effective types of peer support, such as by participating in verification studies or helping to
identify best practices.

The Government should:

Establish consultation offices within healthcare institutions where patient supporters, such as
their family members, can receive counseling.

Examine the best way to evaluate and reward healthcare institutions that implement
consultation support services for people receiving outpatient care, such as by requiring users tomake small payments for those services.



Consider methods of reforming consultation support services within healthcare institutions tostandardize the quality of such services, such as by requiring all parties responsible for providing
counselling services within healthcare institutions to undergo training or by defining indicators
to use as conditions to qualify for the Patient Support System Improvement Premium. An
example of one such indicator might be the ratio of the number of consultations to the total
number of hospitalized patients.



Acknowledge and reward effective efforts to provide peer support consultations undertaken bymunicipalities.



While collaborating with the private sector, promote research and development on products
and services that promote cooperation between people receiving healthcare and medical staff
60

such as treatment apps or tools for online medical examinations and information sharing.
Medical staff should:

Reinforce healthcare institutions’ systems that provide on-site consultation support to people
receiving healthcare.

Examine how to make effective use of consultation support systems for people receiving
healthcare and their supporters, such as their family members.

Promote the use of online medical examinations, tools for sharing information between people
receiving healthcare and medical staff, and treatment apps.

The private sector (including companies and organizations) should:Advance research and development on products and tools that promote cooperation between
people receiving healthcare and medical staff, such as treatment apps and tools for online
medical examinations and information sharing.

61

5.4 Perspective 4: Establish cooperative systems for the entire life course(1) Achieve team-based medicine that includes the people receiving healthcare on treatment
teams.
To support decision-making among people receiving healthcare while providing high-quality care, itis essential to achieve team-based medicine in which team members from each discipline share goals
and information and cooperate and complement each other while making the most of their individual
expertise. For example, at healthcare institutions with multiple medical departments, it is importantto establish multidisciplinary conferences for sharing information concerning people receiving
treatment on a ward basis that are begun by hospitalists, 36 whose multidisciplinary knowledge
allows them to play central roles in multidisciplinary efforts.
As mentioned in Perspective 3, patient organizations or peer support programs can provide
psychological support to people receiving healthcare, and have important roles to play as partners incooperation. Some have reported that they have received effective advice or support for deciding
treatment plans and for balancing treatment and employment from peers with the same troubles
and experiences as themselves. Representatives of patient organizations or peer supporters shouldbe allowed to function as members of treatment teams according to the situation and needs of theperson receiving care.
(2) Build a framework for collecting feedback from people receiving healthcare.
Frameworks that allow for people receiving healthcare to give feedback, such as patient satisfaction
surveys, are important to provide PLWNCDs who require treatment over long periods to be able toreview and change treatment plans they previously agreed to at the appropriate times and in theappropriate settings. Although measures to collect feedback for medical staff from people receiving
healthcare such as the MHLW’s Project for Promotion of Evaluation and Publishment of Medical Care
Quality or the survey projects conducted by the Japan Council for Quality Health Care gauge patientsatisfaction levels and use them as an indicator for evaluating the quality of healthcare, their targets
are limited to hospitals. Such measures should be expanded to target all healthcare institutions,
including clinics. Also, if feedback from people receiving healthcare reaches medical staff providing
primary care, it is likely to contribute to promoting the creation of systems for cooperation over theentire life course.
Furthermore, to evaluate and monitor the quality of healthcare services being provided at hospitals

36

General practitioners specializing in care for hospitalized patients.

62

or clinics by third-party organizations, systems should be established to provide incentives for those
who provide higher-quality services. To ensure the public is being provided efficient, high-quality
medicine and care in the U.K, for example, the Care Quality Commission (CQC) has established aframework to evaluate and monitor public and private hospitals, general practitioners (GPs), andwelfare and long-term care institutions and for publicizing the results of their evaluations. It conducts
these activities from the position of an independent public institution. The results of their evaluations
are highly-transparent and useful for the public when selecting healthcare institutions or welfare andlong-term care institutions. Furthermore, medical services provided by each physician are evaluatedonce per year by a reviewer using user feedback and other messages entered through the ePortfolio
system.37 In addition to medical and care services provided by medical staff, these evaluations also
examine topics like bedside manner, if staff was considerate when interacting with patients, theadministration system of the healthcare institution, and education and training systems for staff.
Furthermore, there is a results-based reward system called the Quality and Outcomes Framework(QOF) which was implemented for primary care in the U.K. in 2004. This system provides medical
service fee rewards to create incentives for GPs who strive to provide high-quality healthcare. A
similar system is worth considering for Japan as well.
(3) Construct a platform for promoting cooperation.
To accelerate the social implementation of products and services promoting cooperation, it isimportant for stakeholders with an interest in this field to collaborate. Products and services that
promote communication between people receiving healthcare and medical staff such as online
medical examinations, tools for sharing information, and treatment apps should operate in a mutuallycompatible manner to provide seamless, one-stop service. Looking to one example from abroad, amajor financial group in China called the Ping An Insurance (Group) Company of China, Ltd.
independently developed an ecosystem centered on people receiving healthcare that provides
healthcare in a seamless manner. They have developed various services based on the needs of people
receiving healthcare which allow them to make appointments for medical examinations, accessonline examinations, and receive prescriptions. Their users can also purchase generalpharmaceuticals or insurance. Based on guidance from each Ministry or municipal government, aplatform should be built which can conduct matching for public-private partnerships and to match
private companies and organizations with research institutions to promote the development of
products and services and to ensure their mutual compatibility. Said platform would also promote
the sharing and delivery of information for building networks among related parties. Furthermore,
to ensure that the platform is a place where products, solutions, and systems for the issues facing

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Digitized records

63people receiving healthcare can be planned with an accurate understanding of those issues, people
receiving healthcare should be involved in that platform.
Examples of specific actions to take for perspective 4:
Specific actions for each stakeholder to take for perspective 4 are described below.
Members of the public (including people receiving healthcare) should:Proactively engage in reviewing decision-making processes for health and healthcare andproviding feedback to medical staff when such opportunities arise.

Be conscious of consulting healthcare specialists other than physicians.

The Government should:Conduct user satisfaction surveys for all healthcare institutions and utilize user feedback whenbuilding healthcare provision systems.



Establish a platform that promotes cooperation by creating networks among related parties orby providing matching support.



Establish a framework for evaluating and verifying products and services provided by the private
sector that satisfy the needs of the public.

Medical staff should:Conduct user satisfaction surveys targeting people receiving healthcare and, based on the
results, establish on-site systems at healthcare institutions for exploring ways to improve care.

The private sector (including companies and organizations) should:Advance research and development on products and services for efficiently collecting feedback
from people receiving healthcare.

64Conclusion
6.1 The limitations of this study and topics to examine in future discussions
One limit of this study was that only certain groups of people could participate in the survey and indepth interviews. Because this study analyzed and considered issues based on data obtained frompeople receiving healthcare, it does not provide sufficient consideration to issues facing medical staff
or their causes. A follow-up survey from the perspectives of all disciplines involved in providing
healthcare is needed, and should not only target physicians, but also nurses, physical therapists,
occupational therapists, registered dietitians, and other such professionals. Furthermore, this survey
has not been able to sufficiently survey or analyze cases when participants faced difficulties withdecision-making for reasons such as dementia or old age. In addition to healthcare institutions, futurestudies should also take welfare facilities and other institutions providing long-term care into
consideration. It is also necessary to examine support for decision-making among patients and otherparties most affected, supporters such as family members, and medical staff.

6.2 Collaborators and supporters who contributed to this projectSpecial collaborators (titles omitted, in alphabetical order):Haruka Ikezaki

PPeCC

Hiroki Takeda

Chief Knowledge Officer, PPeCC

Kazuhisa Takeuchi CEO, One Fukuoka Co. Ltd. (Former Counselor of the Ministry of Health, Labourand Welfare)
Kaori Shukunobe

PPeCC

Takeshi Shukunobe President and CEO, PPeCC
Collaborators (titles omitted, in alphabetical order):Shinsuke Amano

Chairman, Japan Federation of Cancer Patient Groups; Chairman, Group Nexus
Japan

Yoshiko Arai

Representative, Nanbyo Café Omusubi

Hitoshi Fukuhara

Representative Director, Heart Valve Voice

Kazuo Hasegawa

Representative, NPO Lung Cancer Patient Association One Step

Keiko Inoi

Vice-Representative Director, NPO Japan Marfan Association

Hiroyuki Kawakatsu Vice-Chairman, Japan Stroke Association
Yohei Nishiguchi

Chairman, Cancer Parents

Yukiko Nishimura

President, Advocacy Service for Rare and Intractable Diseases (NPO ASrid)

Kensuke Nose

Co-Representative, Patients groups MYSTAR-JAPANMitsuhide Sano

Former Chairman and Executive Director, NPO J-BREATH

Takehito Tokuda

Board Member, NPO Dementia Friendship Club; Operating Member, Designing for
Dementia

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Over the course of our past activities, HGPI has received many valuable comments and words of advice
from Mr. Yohei Nichiguchi (Chairman, Cancer Parents). We express our deepest gratitude to him forparticipating in the workshops we held to create this proposal and offer our sincere prayers that his soulrest in peace.

Collaborators in hearings (titles omitted, in alphabetical order):Kyoko Ama

Chairperson, Japan Patient Support Research Organization

Seiji Bito

Director, Clinical Training Department, General Internal Medicine, Tokyo Medical
CenterHirono Ishikawa

Professor, Teikyo University Graduate School of Public Health

Mamoru Ichikawa

Representative, Association of Medical Journalism; Secretary, Medical Journalists
Association of Japan

Kazuhiro Nakayama Professor, St. Luke’s International University of Nursing Informatics
Naomi Sakurai

Representative Director, Cancer Survivors Recruiting Project; Director, Japan
Federation of Cancer Patient Groups

Ryuichiro Sasae

Director, General Medicine Department and Director, International Office, NTT
Medical Center Tokyo

Yasuhiro Sensho

CEO, SENSHO-GUMI, Co., Ltd. (Former Director-General, MHLW)

Yasuharu Tokuda

Manager, Muribushi Project for Okinawa Residency Programs; Fellow, HGPI

Ikuko Toyoda

Chairperson, NPO Kakehashi

Ikuko Yamaguchi

Chief Director, Consumer Organization for Medicine and Law (COML)

Supporters and Organizations:
Organizations that have indicated their support for the recommendations in this proposal:
Advocacy Service for Rare and Intractable Diseases (NPO ASrid)

Japan Federation of Cancer Patient Groups
Cancer Parents

Group Nexus Japan
Cancer Survivors Recruiting ProjectHeart Valve VoiceNPO J-BREATH

Nanbyo Café Omusubi
NPO Dementia Friendship ClubNPO Lung Cancer Patient Association One Step
Patients groups MYSTAR-JAPAN66

Project team:Health and Global Policy Institute NCD Alliance Japan Secretariat
Hiroko Nishimoto (Senior Manager, HGPI)
Yuko Imamura (Manager, HGPI)Go Aso (Associate, HGPI)Yui Kohno (Associate, HGPI)Shiori Arima (Associate, HGPI)
Narihiro Bono (Program Specialist, HGPI)Eri Yoshimura (Senior Manager, HGPI)Ryoji Noritake (CEO, Board Member, HGPI)

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This report is copyright 2020 Health and Global Policy Institute.

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