The Health and Global Policy Institute (HGPI) Platform Project for Patient and Public
Involvement

Policy Recommendations – Further Promoting Patientand Public Involvement in the Policy-Making Process
Steps for Achieving Healthcare Policies That Are Truly Centeredon Patients and Citizens

July 2022

1

Table of contents
1.

Introduction ..................................................................................................................................3Introducing Health and Global Policy Institute (HGPI) ..............................................................3Introducing NCD Alliance Japan ................................................................................................3Defining NCDs............................................................................................................................32.

Policy Recommendations – Further Promoting Patient and Public Involvement in the
Policy-Making Process...................................................................................................................4

Executive summary ...................................................................................................................4Perspective 1: Establishing an environment for PPI ..................................................................6Perspective 2: Participation in the policy-making process ........................................................8Perspective 3: Following up on policy implementation ..........................................................10

3.

Advisory board ............................................................................................................................12

Advisory board members (titles omitted; in alphabetical order) ............................................12Special advisor (titles omitted) ................................................................................................12

Advisory board meeting details...............................................................................................12

Key discussion points from advisory board meetings .............................................................12

NCD Alliance Japan seminars for patients and other affected parties ....................................14

4.

Acknowledgements.....................................................................................................................16

5.

Platform Project for Patient and Public Involvement team ........................................................172

Introduction

Introducing Health and Global Policy Institute (HGPI)
Health and Global Policy Institute (HGPI) is an independent, non-profit, non-partisan health policy
think tank established in 2004. In its capacity as a neutral think tank, HGPI involves stakeholders
from wide-ranging fields of expertise to provide policy options to the public to successfully create
citizen-focused healthcare policies. Looking to the future, HGPI produces novel ideas and values
from a standpoint 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 other organizations. HGPI intends for its policy options to be effective not only in Japan, butalso in the wider world, and in this vein the institute is very active in creating policies for resolving
global health challenges.
Introducing NCD Alliance Japan1
NCD Alliance Japan is a collaborative platform operated by HGPI for engaging civil society andpromoting countermeasures for non-communicable diseases (NCDs) including cancers,
cardiovascular diseases (CVDs), diabetes, chronic respiratory diseases, and mental and neurologicaldisorders. NCD Alliance is a collaborative platform bringing together over 2000 civil society
organizations and academic institutions in more than 170 countries, and NCD Alliance Japan has
operated as its Japanese branch since 2013. NCD Alliance Japan became a full member of the NCD
Alliance on January 17, 2019. Through three key activities, which are formulating policy proposals,
supporting people living with NCDs and other parties affected by NCDs, and conducting survey
research, NCD Alliance Japan aims to unite those most impacted by NCDs with multi-stakeholders inindustry, Government, academia, and civil society from Japan and abroad to contribute to solving
issues in the field of NCDs.
Defining NCDs
According to the World Health Organization (WHO), the term “non-communicable diseases” refers
to chronic diseases including cancers, 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 unhealthy
diets, insufficient exercise, smoking, or excessive alcohol use. According to WHO statistics, NCDs are
the cause of 82% of deaths in Japan and 71% of deaths worldwide, making the establishment of
NCD countermeasures an urgent issue.2

1

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

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Policy Recommendations – Further Promoting Patient and Public Involvement in the
Policy-Making Process
Executive summary
Since its establishment in 2004, Health and Global Policy Institute (HGPI) has operated with themission of serving in its capacity as a neutral think tank to involve stakeholders from wide-ranging
fields of expertise to provide policy options to the public and successfully create citizen-focusedhealthcare policies. This concept is assigned great value in every HGPI project, and in almost every
opportunity for discussion that we create, patients and other affected parties in the disease area inquestion participate alongside representatives of industry, the Government, the legislature, andacademia. After identifying policy issues and considering next steps through fair and equal
discussions with multi-stakeholders representing industry, Government, academia, and civil society,we work to synthesize our discussions into policy recommendations and publicize them.
Alongside various changes in the environment surrounding healthcare in recent years, the medical
community as a whole has started expanding patient and public involvement (PPI) in many aspectsof conducting research and formulating policy to achieve better healthcare. For example, regarding
PPI in the field of medical research and clinical trials, the Japan Agency for Medical Research andDevelopment (AMED) conducted the Survey of Trends in PPI in Clinical Research according to thePlan for Promotion of Medical Research and Development enacted by the Headquarters for
Healthcare and Medical Strategy Promotion in 2014. That survey identified the need to promote PPI,
and AMED created “The Patient and Public Involvement Guidebook: First Steps for Collaboration
Among Patients and Researchers.”
From the perspective of the policy-making process, there was momentum for involving those mostaffected by policies in policy creation in fields like community development and environmental
problems earlier than in health policy. In the field of disability welfare policy, which is close tohealth policy, during the process of creating the Convention on the Rights of Persons with
Disabilities (CRPD), which was adopted by the United Nations in 2006, many people living withdisabilities around the world got involved under the slogan, “Nothing About Us Without Us.” Thisdevelopment influenced many policy fields. In recent years, there have been many cases in which
involving people with disabilities in such forums became mandatory, and there have been many
academic studies conducted on the methods and effects of their involvement. In health policy, PPI
has also started to take root in various disease areas like dementia and mental disorders, and ismainly represented by the Basic Act on Cancer Control of 2008 and the Basic Act on Cardiovascular
Disease Measures of 2018. Discussions that led to the enactment of these laws started with thevoices of patients and, after they were enacted, patients and citizens have been involved as
4members of councils and other discussion forums for drafting plans. Also in recent years, somecountries and regions have started developing laws that not only aim to respond to certain diseases,
but to also uphold patients’ rights. In Japan, the Parliamentary Association for the Enactment of the
Basic Act on Medical Care was established in 2019 with the objective of enacting a basic act for
medical care that is centered on upholding the rights of patients.
However, patients and citizens who have participated in study groups and committees hosted by
the national and local governments have pointed out various issues. These include both operational
issues, such as not being able to participate completely, as well as issues related to participants
themselves. For example, some people are unable to fully express their own opinions even whenpresented with the opportunity to do so.
Given this backdrop, in FY2021, HGPI brought together opinion leaders in this field from industry,
Government, academia, and civil society to hold two advisory board meetings and to conductindividual hearings with committee members to examine concrete next steps for more effective PPI
in policy-making forums.
As pointed out at the advisory board meetings for this project, there are still many issues to beaddressed for PPI in the field of health policy. These are not only issues that lie with policy
decision-makers in the government or legislature; there are many cases in which there are issues
among the patients and citizens who participate, as well. There are also points of improvement
among industry and academia, who are collaborating parties in policy creation. The following policy
recommendations were compiled by the secretariat at HGPI with the aim of further promoting PPI
in health policy and are based on discussions held at our advisory board meetings and individual
hearings conducted for this project in FY2021 as well as on past HGPI activities.
The policy recommendations are presented from three perspectives:

Perspective 1: Establishing an environment for PPI
Perspective 2: Participation in the policy-making process
Perspective 3: Following up on policy implementation
Based on these three perspectives, we will identify next steps for further promoting PPI in healthpolicy in the future.

5Perspective 1: Establishing an environment for PPI
Discover and educate patient advocate leaders on a continuous basis and provide support for
their activities to prevent the burdens of that role from becoming concentrated on certain
individuals
A challenge facing many disease areas is that people who can serve as patient advocate leaders arelimited to a certain few, which places heavy burdens on them. To ensure continuous activities forpatient advocate leaders in each disease area, various people of different genders, ages, andlocations must be identified and trained. This is also necessary to ensure active participation fromdiverse patient advocate leaders. To achieve a policy-making process that is based on sounddemocracy, it will be essential to ensure there are opportunities for people who are minorities andin vulnerable positions to express their opinions. In the context of health policy, this refers topatients and other healthcare beneficiaries. In addition to financial support for activities, support
can take many forms, such as providing forums, opportunities, and information. It will be necessary
for stakeholders other than patients and affected parties to consider which forms of support arefeasible for them to provide within their respective restrictions and to provide support after
matching it to the needs of patients and other affected parties.
Secure educational opportunities to provide the necessary knowledge and grounding while
promoting PPI in the policy-making process
To participate in the policy-making process and engage in effective activities, in addition to specificknowledge regarding the policy field in question, people must also know about policy-making itself.
Furthermore, to be able to collaborate with other stakeholders, they must also deepen theirknowledge regarding other people or organizations. This may include the structure and culture ofthose organizations. In addition, they will need to have positive attitudes toward active
collaboration and cooperation. In many cases, patients and citizens do not have this knowledge andbackground from the start of their activities, so when there are opportunities for PPI, they must be
provided with opportunities to acquire this knowledge in advance. To prevent PPI from becoming amere formality, patients and citizens engaged in it must show a willingness to learn, and eachstakeholder must share the knowledge and information they possess to work toward achieving asound policy-making process.


The roles of the national Government, local governments, and the Diet
Provide opportunities for people to obtain basic knowledge regarding thepolicy-making process or legal systems related to social security and to deepen theirunderstanding regarding how the national Government, local governments, and Diet
are organized or operate.
6

The role of industry
Make the information (mechanisms, characteristics, etc.) regarding pharmaceuticals
and medical devices held by industry or each company transparent to the greatest
extent possible and publicize said information in easy-to-understand formats, such as
on websites.



The roles of academia and think tanks
Publicize information regarding the latest medical evidence in the disease area inquestion and policies or examples from other countries using language that can beeasily understood among people who are not specialists.

The roles of patient advocacy organizations
Demonstrate a clear willingness to collaborate with people who can participate as
new patient advocate leaders, members of the general public, and otherstakeholders, and publicize the content of activities in an easy-to-understandmanner.



The role of the media
While emphasizing scientific evidence, convey information regarding the latest
medical expertise and policies in various disease areas and be proactive about
establishing opportunities for the stakeholders mentioned above to broadly publicize
their activities.

Create opportunities for patient advocacy organizations from different disease areas tocollaborate and interact
By disease area, there is significant variation in scale of activities and amount of experience
possessed by patients and other affected parties. This means opportunities must be provided forpatient advocate organizations from different disease areas to interact. Doing so will enable patientadvocate leaders in disease areas with smaller pools of experience to learn from the experiences of
those in areas where more progress has been made. It will also be necessary to build anenvironment in which patients and other affected parties who might not belong to advocacy
organizations can participate in those interactions, as well as to secure opportunities for everyone
to engage in PPI according to their own circumstances.
Refer to activities undertaken for PPI in fields of policy other than health policy, and adopt anddisseminate practices found to be more effective
As mentioned above, PPI in the policy-making process has been implemented in various fields
adjacent to the field of health policy, like community development, environmental issues, anddisability welfare. Many of these areas have long histories of PPI, and the effectiveness of the7methods used in their activities has been verified in academic terms in many areas. We must referto examples from policy fields other than health policy and actively adopt their practices to pursue
effective PPI.

Perspective 2: Participation in the policy-making process
Utilize opportunities for expressing diverse opinions to build recognition of issues among agreater number of patients and citizens
The first step in enacting or improving policies is to make the Government or Diet aware that apolicy response is required to resolve a current issue facing society or in how our systems currently
operate. To do so, patients and citizens must be proactive about expressing those issues andheighten interest among the general public and policymakers. Such movements can also start from
efforts in industry or academia, so it will be necessary for patients and citizens to use various
channels to communicate the issues they feel are relevant. At the same time, it is also safe to saythat for sustainable PPI, it will be important for other stakeholders to be aware that patients andcitizens are a type of specialist, to treat them with respect when interacting with them, and toprovide them with adequate compensation for the time and expertise they contribute.
The roles of the national Government and local governments
Instead of only allowing certain patients or advocacy organization representatives toparticipate in forums for expressing opinions, secure opportunities to enable as
many patients and citizens as possible to express their opinions using methods likepersonal interviews or hearings, surveys, and workshops.



The role of the Diet
In their capacity as Diet members, members of the Diet should engage incommunication with many patients and citizens and actively deliver the opinions
they gather to the national and local governments.



The role of industry
In addition to fulfilling the role of industry, stay up-to-date on the issues faced bypatients and citizens as users and utilize that information when issuing policy
recommendations from companies or business groups.



The role of academia
Based on the concept of PPI in medical and clinical research, always include theperspectives of patients and citizens when setting research topics or issuing policy
recommendations.



The role of the media
When presenting information related to healthcare, incorporate the perspectives of8patients and citizens in addition to those of the Government, industry, andacademia.
Make the necessary considerations to ensure patients and citizens with insufficient specialized
knowledge can participate in discussions
Even if the aforementioned educational opportunities are provided, there are many cases when
patients and citizens who participate in policy-making forums have less experience and knowledge
than other stakeholders regarding activities in the disease area. This means other participants andmeeting organizers must ensure these patients and citizens have chances to fully comprehend thecontent of discussions and to have their questions answered to ensure they can participate on truly
equal terms.
Participating in policy decision-making does not only mean participating in discussion forums.
Public comments during the formulation of laws, regulations, and all types of government plansprovide another important opportunity for patents and other affected parties who do notparticipate in discussions as committee members to present specific policy recommendations. The
administration should take steps to ensure various opportunities for participation like publiccomments and, whenever possible, disclose what actions were taken in response to comments
received.


The roles of the national Government and local governments
Reexamine how to best operate meetings to prevent PPI from becoming a formality,
such as by providing explanations on meeting content in advance or by establishingguidelines or assessment criteria for meeting operations.



The roles of industry and academia
Use language that is easy to understand for patient and citizen committee members
in attendance and show a willingness to cooperate.

The roles of patient advocacy organizations
Avoid placing oversized burdens on patient and citizen committee members who
participate in discussions, such as by creating support opportunities like reading
through meeting reference materials together in advance; or by creating support
systems that help them adequately express their opinions, such for creatingreference materials.

Patient and citizen committee members who join discussions must channel society-wide issues in
addition to communicating their own issues, and organize and communicate those issues in a9manner other stakeholders can understandWhile cooperation from other stakeholders is required to engage patient and citizen committee
members, patient and citizen committee members must also make sure they are communicating
their thoughts to other stakeholders in a manner that is easy to understand. The direction of
discussions must be set by allocating a limited amount of time for each person’s comments, which
demands sophisticated organizational skills. Speakers must keep to their allotted time during
discussions, prepare their own issues and main points, and communicate those points in a logicalmanner. These conditions are the same for patient and citizen committee members, whose
contributions to discussions should not be limited to their personal experiences. In addition to
those personal thoughts, they must also serve as representatives for patients and citizens and cover
general issues as much as possible. This means they must determine the priority of items andprepare their points in advance so those points can be communicated in a manner otherstakeholders can comprehend. Discussion forums can be utilized to gain understanding from otherstakeholders and encourage collaboration if patient and citizen committee members maintain asense of calm and present their points logically while sometimes expressing their emotions.

Perspective 3: Following up on policy implementation
Continue working to ensure policies are implemented in the intended manner after they are
finalized
The implementation phase that comes after a law has been enacted or a system has been
established is an important part of the policy-making process. During this phase, patients andcitizens must confirm that the finalized policy is being implemented or is functioning as originallyintended. In the event a policy is not being implemented as originally intended, patients andcitizens must actively approach the officials serving in the national and local governments who areresponsible for its implementation. Monitoring politics and the Government is one of the key rolesof both citizens and the Diet. In health policy, patients and affected parties must play central rolesin that monitoring as they work to engage the general public.
The role of the Diet
Check if finalized laws and systems are being implemented as originally intended,with the included perspective that they are based on the needs of patients andcitizens who are affected by the policy in question.



The roles of academia and think tanks
Assess policy implantation status and communicate findings to society. When doingso, include specific data.

The roles of patient advocacy organizations
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Conduct hearings and surveys regarding policy implementation status among
patients and other affected parties belonging to and outside one’s organization, thensummarize and disseminate findings on the current status.


The role of the media
Incorporate the viewpoints of patients and other affected parties when reporting on
or assessing policy implementation status.

Patients and citizens must be actively involved in policy assessment to further improve policies
Opportunities for policy assessment are important for identifying future policy issues as well as forcreating a virtuous circle in the policy-making process. It will be necessary for patients and citizens tocooperate with industry and academia and, in a continuous manner, communicate their opinions onchanges patients and other affected parties experienced due to implemented policies and what points ofimprovement there are to address next. Patients and citizens who take part in the policy-making process
in a specific policy area over the medium to long term will foster trusting relationships with otherstakeholders, which will help them become recognized as key players in the policy-making process. This
cycle will lead to collaboration among broad stakeholders in the policy-making process.

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Advisory board

Advisory board members (titles omitted; in alphabetical order)
Kyoko Ama (Representative, Children and Healthcare Project; Fellow, HGPI)
Shinsuke Amano (Chair, The Japan Federation of Cancer Patient Groups; CEO, Group Nexus Japan)
Yoshiko Kobata (Director, CSR Promotion Office, General Affairs Bureau, Fuji Television Network,
Inc.)
Naomi Sakurai (President, Cancer Solutions Co., Ltd.)
Yasuhiro Sensho (CEO, SENSHO-GUMI, Co., Ltd.; Former Director-General, MHLW)
Teppei Maeda (Lawyer, Maeda & Unosawa Law Offices; Representative, Medical Basic Act
Community)
Kaori Muto (Professor, Department of Public Policy Studies, Institute of Medical Science, Universityof Tokyo)
Ikuko Yamaguchi (Chief Director, Consumer Organization for Medicine and Law (COML))
Special advisor (titles omitted)
Yuji Inokuchi (Vice-President, Japan Medical Association)
These recommendations were compiled by HGPI in its capacity as an independent health policy
think tank based on discussions at meetings held for this project. They should not be taken to
represent the opinions of any specific advisory board member or other related party, or to any
organization to which they belong.
Advisory board meeting details
First meeting: Tuesday, November 9, 2021; from 18:00-19:30
Second meeting: Thursday, January 27, 2022; from 18:00-19:30
In light of the circumstances surrounding COVID-19, both meetings were held remotely with an
online conferencing system.
Key discussion points from advisory board meetings
Discussions held at advisory board meetings examined the current situation surrounding PPI and
future solutions with the goal of achieving more significant PPI. Key points from the meetings are
summarized below.


Establish an environment in which all citizens can learn about social security systems
including the healthcare system

Based on experiences from the COVID-19 pandemic, it will be necessary for citizens to learn about
12the structure of health insurance and healthcare services to foster broader recognition toward
problems facing healthcare and social security in the context of healthcare as a social infrastructure.
This can begin with topics close at hand, like health self-management or how to make the most outof visits to healthcare institutions. An environment must be created in which citizens are given
opportunities to learn about these topics during school education and, for adults, throughcorporate benefits programs.


Make the policy-making process more transparent

For patients and citizens, there are still many aspects of the policy-making process that are unclear.
Steps must be taken to further expand live online broadcasting of meetings at the national and local
governments that are open to the public. The policy-making process must also be made moretransparent, such as by establishing guidelines for selecting patient and citizen committee members
and making that selection process more visible.


Make the operations of meetings held by the administration subject to third-party
assessment

There are no uniform methods for operating government meetings and the level of PPI can varydepending on the discretion of meeting organizers. A mechanism is necessary that encourages
improvement by having neutral third-parties conduct comprehensive assessments based on certain
criteria and disclose their findings to the public. Such criteria might include confirming if diversity
and neutrality were considered during committee member selection, or if steps are being taken to
ensure transparency, such as by disclosing information like reference materials or minutes.
Ensure diversity among patient and citizen committee members instead of requiring them torepresent their respective groups

As with every stakeholder, having a limited number of patient and citizen committee members
restricts the scope of representation at meetings. From the perspective of meeting involvement,
steps must be taken to ensure diverse opinions are being expressed. This can be accomplished bygathering opinions before meetings are held, or by using other methods of PPI such as hearings,
workshops, questionnaires, and public comments.


Arrange and provide the knowledge patients and citizens need to serve as committee
members

Educational content must be created so people can, in a systematic manner, acquire the knowledge
they need to serve as patient and citizen committee members and to have constructive discussions.
There are many cases in which gathering that information or knowledge depends on the ability of13

the individual serving as a committee member. It will be necessary to establish resources where
information and knowledge from each stakeholder is gathered and provided, from knowledge
required of all patient and citizen committee members to the knowledge required for activities in a
specific disease area.
NCD Alliance Japan seminars for patients and other affected parties
First seminar: Tuesday, December 7, 2021
“The Significance of Reflecting the Voices of Patients and Other Healthcare
Beneficiaries in Policy”
Ms. Kyoko Ama (Representative, Children and Healthcare Project; Fellow, HGPI)Key points of the lecture Four ways citizens can get involved in reflecting the voices of affected parties in policy aresubmitting public comments, forming organizations, observing study groups and othermeetings, and becoming members of study groups or other committees.
 Aspiring participants must process their lived experiences as individuals and engage inconstructive opinion exchanges with broad stakeholders.
 Aspiring participants do not need to learn vast amounts of information from specialized fields
like healthcare professionals and expert committee members do, and they should recognize
the importance of speaking from the viewpoints of members of the general public.
 The most important action for a patient committee member to take is to listen closely to thevoices of those most affected.
For details, please visit: https://hgpi.org/en/events/ncd-20211207-1.html.
Second seminar: Tuesday, February 22, 2021
“The Hospitals We Need in the Era of COVID-19: The Need for Wi-Fi in Hospital
Rooms”
Mr. Shinsuke Kasai (Freelance Announcer; #Hospital Room Wi-Fi Council)
Key points of the lecture In-person visitations continue to be restricted or suspended to prevent the potential spreadof COVID-19, but many patients say they are saved by the feelings they get from remotevisitations. “Hospital room Wi-Fi” is becoming a new standard criteria when selecting ahospital.

14 The current presumption that Wi-Fi is only a source of leisure for patients no longer applies inthe era of COVID-19. Hospital room Wi-Fi is actually a lifeline.
 In September 2021, we conducted our first nationwide survey, “Every Room At This Hospital
Has Wi-Fi! The Grand Survey.” We have presented in-room Wi-Fi introduction rates byprefecture and municipality and a list of hospitals where every room has Wi-Fi on our
homepage, which has made an impact.
 Based on the nationwide survey mentioned above, Iwate Prefecture introduced free Wi-Fi inevery room in all its prefectural hospitals. It is important to drive policy by involving
multi-stakeholders, including the Government.
For details, please visit: https://hgpi.org/en/events/ncd-20220222-1.html

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Acknowledgements
Over the course of planning and operating this project since its start at the beginning of FY2021, we
have received input from many people representing industry, Government, academia, and civilsociety. In particular, we would like to express our deepest gratitude to the members of ouradvisory board, who provided expert advice and support for the objectives of theserecommendations; to Dr. Yuji Inokuchi (Vice-President, Japan Medical Association), who served as
special advisor to this project; and to the many experts who joined our hearings. Please note that,as a general rule, the affiliation and position listed for each participant reflects those at the time ofadvisory board meetings and that they may differ from current affiliations or positions.
Furthermore, in pursuit of its mission of “achieving citizen-centered healthcare policy,” HGPI
collaborates with a wide variety of patients and other affected parties in many projects. These
policy recommendations were, in large part, born from collaboration with those parties, and we at
HGPI once again express our gratitude to all patients and other affected parties who worked withus.
Please note that these recommendations are a compilation of opinions shared at hearings anddiscussions held over the course of this project that were gathered by its author, HGPI. They should
not be taken to represent the opinions of any specific participant or organization.

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Platform Project for Patient and Public Involvement team

FY2021 project leaders
Yuko Imamura (Manager, HGPI)
Tomohito Shibata (Manager, HGPI)
Shotaro Tsukamoto (Associate, HGPI)Policy recommendation authors
Shunichiro Kurita (Manager, HGPI)
Shotaro Tsukamoto (Associate, HGPI)
Hiroko Makino (Program Specialist, HGPI)Ryoji Noritake (CEO, Board Member, HGPI)

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This report is copyright 2022 Health and Global Policy Institute (HGPI).

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