[Event Report] The First NCD Alliance Japan Seminar for People Living with Non-communicable Diseases – The Significance of Reflecting the Voices of Patients and Other Healthcare Beneficiaries in Policy (December 7, 2021)
On December 7, 2021, NCD Alliance Japan (Secretariat: Health and Global Policy Institute (HGPI)) hosted its first seminar for patients and other interested parties titled, “The Significance of Reflecting the Voices of Patients and Other Healthcare Beneficiaries in Policy.” At the seminar, representative of the Children and Healthcare Project Ms. Kyoko Ama gave a lecture on the significance of patient involvement, specific ways patients can get involved, and good examples of involvement. To help accumulate useful knowledge and know-how for patients and other affected parties who want to take part in policy making in the future, a video of the lecture has been made available. (Please note that the video features excerpts from the main part of the seminar only.)
Key points of the lecture
- Four ways for citizens to reflect the voices of patients in policy are issuing public comments, forming an organization, observing study groups and other meetings, and becoming a member of a study group or other committee.
- Aspiring participants must process their lived experiences as individuals and engage in constructive opinion exchanges with broad stakeholders.
- Aspiring participants do not have to learn a great amount of technical information from specialized fields like healthcare professionals and expert committee members do, and they should recognize the importance of making statements from the perspective of a member of the general public.
- The most important action for a patient committee member to take is to listen closely to the voices of those most affected.
■ What first inspired Ms. Ama to take action
My child once had to go to the emergency room. They were safe in the end, thanks to our good fortune, but they may have suffered something permanent had we been unlucky. I was an anxious parent who did not know much about healthcare. So, I decided to help others overcome the same feelings by helping them learn about healthcare, which led to the launch of an association called “Shiro! Shoni Iryo Mamoro! Kodomo-tachi” (“Let’s learn about pediatric medicine and protect the health of children”) in April 2007. In 2018, I began participating in the Ministry of Health, Labour and Welfare (MHLW) “Project for Promoting the Effective Use of Healthcare” as one of the people whose job was to help generate solutions. During my time there, I continuously emphasized that it is important for efforts to raise awareness of how to best use healthcare services to be led by local governments rather than by private initiatives. As a result of those efforts, model projects to build awareness toward the effective use of healthcare were launched in Shinjuku City, Yokohama City, and Okazaki City in February 2020, and “Shiro! Shoni Iryo Mamoro! Kodomo-tachi” was dissolved in April 2020. My current activities focus on issuing notices regarding the implementation of those projects to each municipality by the end of FY2021.
■ Four methods for citizens to reflect the voices of those most affected in policy
1. Issuing public comments
- To participate by issuing public comments, there are many opportunities where public comments are collected at both the national level and at each level of municipal and local government. Although it can be difficult to provide opinions on every issue for which comments are being collected, public comments are opportunities for affected parties to communicate their stories, so please take them.
- When composing a public comment, it is important to cover three points: (1) your status as one of the parties most affected; (2) awareness toward issues; and (3) your requests. A long-term perspective is also necessary. Even if current issues cannot be changed immediately, it is important to express your desire for improvement the next time something similar occurs.
- Although people in charge of public relations are usually the ones who respond to public comments, public comments are always included during study groups and in reports. It is a good idea to follow up on discussions by running a search for items that match your public comment.
- Sometimes, I hear people say things like, “The government doesn’t do anything.” I believe this occurs because the government does not always know of or understand citizens’ problems. The government’s goal is to work for the benefit of the people. It is because public comments can help to bridge this gap that it is so important for people to issue them.
2. Forming an organization
- As it is not the main topic today, I will not go into detail on how to form an organization, but communicating your own thoughts and ideas to other people and making allies is key. In the past, to find like-minded parties, I have used academic conferences on related topics and trade shows related to child-rearing.
3. Observing study groups and other meetings
- In the past, one had to go through very complicated procedures to observe study groups. Now, they can be watched on YouTube. Watching them also has the effect of fostering a sense that the public is watching among committee members.
4. Becoming a member of a study group or other committee
- There are various opportunities to share one’s opinion as a patient advocate, such as at study groups and committees held by the national Government, prefectural governments, and academic societies. I will discuss details below, based on my own past experiences.
■ Ms. Ama’s past experiences as a committee member and patient advocate
Past experience on committees
- National: MHLW, Cabinet Office, Ministry of Education, Culture, Sports, Science and Technology (MEXT)
- Municipal: Tokyo Metropolitan Government, Tokyo Fire Department
- Academic societies: Japan Society of Obstetrics and Gynecology, Japan Pediatric Association, Japanese Association for Acute Medicine
Topics Ms. Ama has discussed in past activities
- Pediatric medicine, emergency medicine, firefighting, perinatal care, antimicrobial resistance (AMR), methods of using healthcare effectively, vaccination and immunization, the healthcare system, pharmaceuticals and medical devices, children’s healthcare expenses, nursing education, painless childbirth, etc.
How Ms. Ama began serving on committees
- When I first became aware of my issue, I thought it was a social issue rather than an individual one. I went to ask about it at the MHLW and the Tokyo Metropolitan Government before I really started any activities. When they brushed me off saying “It’s not my jurisdiction,” or “Do your best,” however, I realized I needed a track record. That led to me hosting a lecture at my own organization.
- While participating in a study group as an observer, I heard a member of an academic committee say, “It would be nice if there was a movement for the protection of pediatric emergency care.” So I contacted them, and that led to many opportunities to make connections including with government officials. As a result, even at offices that had previously turned me away when I approached them alone, I was able to receive a response to my requests from twenty people or more. This made me realize the importance of having a track record and connections.
Ms. Ama’s personal experiences
- There were times I raised my hand to speak at roundtables or other meetings but was not called on. Once, at the end of a meeting, I grabbed the microphone and said, “Please give me some time at the next meeting.” I gave a presentation on problems caused by premature childbirth. Before giving the presentation, I thought, “This is a roundtable led by the national Government, so this is information everyone already knows.” But, after my presentation, several participants told me, “I was unaware of the current situation.” That experience taught me that many roundtable participants were distanced from those care settings, which made it difficult for the voices of patients and people serving in real-world care settings to reach them. That made me aware of the significance of being there to serve as a communicator of actual circumstances.
- However, during those activities, there were times I was treated poorly because I am a layperson. The situation is completely different today.
■ Points of focus for patient advocates and Ms. Ama’s impressions
Do not give up trying to communicate
- To clearly communicate your opinions, it is important you do not focus on trying to convey them to everyone. If there is even one person who understands you, carefully foster that relationship and approach them repeatedly.
Generalize your personal experiences to engage in constructive opinion exchanges
- Study groups and committees are only opinion exchange venues. While your firsthand experiences are important, the stronger your feelings are, the more important it is for you to write them down repeatedly until they become generalized. You must ask yourself, “Is this the correct direction to take? Is this what the majority of patients and related parties want?”
- I sometimes hear patient advocates say things like, “These are the things troubling me,” at study groups, but I think many of those meetings are not times one should expect progress. It is important to indicate what sorts of mechanisms can be utilized for solutions. They are meetings to step forward, listen to others, use your imagination, and converse. While there are many social issues, talks will not advance if both committee members and the government do not engage in an open-minded and honest manner.
When taking action, do so in a manner that cuts across fields of disease by listening to the stories of the affected parties while keeping in mind that you are not their representative
- I am often asked to join study groups and committees on issues for which I am not an affected party. While I am of the stance that, as a citizen, there are no issues that are completely unrelated to me, what I emphasize more than anything is listening to the opinions of the people most affected by an issue. I conduct hearings to gather their opinions.
- As for challenges, I currently hold hearings using my personal connections, but there is a limit to what can be achieved through activities undertaken as an individual. Also, it can be difficult for members of the general public to track the results of committee meetings, so I think it would be good if third party organizations like NCD Alliance Japan could fulfill that role.
Do not lose your perspective as a member of the general public
- Even if one tries to engage in constructive opinion exchanges, there are still times when people with good intentions do not meet eye-to-eye. However, paradoxically, it is because of this that committees have layperson patient advocates. Even though they often make mistakes, it is important they continuously communicate what they see as a layperson. I think if I ask too many questions regarding unclear points during the re-enactments held before study groups, I might lose my perspective as a layperson or I might learn to withhold a question because background conditions have not been shared enough. I am careful not to lose my perspective as a layperson.
- There is nothing wrong with not knowing as much as a healthcare professional. What is important is attempting to communicate. If you find you cannot speak your mind during a study group, I think you should try communicating your thoughts afterwards, over email.
- The more well-informed you become, the more likely you are to form the same opinions as healthcare professionals. I am not criticizing being well-informed. Just like we recognize the importance of involving a broad variety of healthcare professionals, I think it is also necessary to have citizen diversity. Therefore, I do not think every patient committee member must aim to acquire the same knowledge and opinions as a healthcare professional. Committee member diversity is important, and I see a need to have people who can communicate the voices of citizens. I think that if you have the time to become well-informed, it would be better to use that time to listen to the voices of the parties most affected.
Hold constructive opinion exchanges and gather information effectively
- I pay particular attention to valuing and not criticizing the efforts of each stakeholder, including the government. When there is something I want to emphasize, I make a conscious effort of trying to listen to the other party’s story twice as much. It is also necessary that you communicate your opinion in a straightforward, constructive manner and, based on a mutual understanding that the opinion is coming from a citizen, for participants to understand the differences in their positions and backgrounds.
- When gathering information, it is effective to get help from parties like healthcare institutions or family doctors. Also, even though it can be difficult to understand public comments all by yourself, once you have expanded your circle, you might be able to ask the people involved or people in the government. It is important to not try to do everything by yourself
Speaker:Kyoko Ama (Representative, Children and Healthcare Project)
Date and time:Tuesday, December 7, 2021; from 18:30 to 19:45 JST
Format:Online webinar using the Zoom conferencing system
Participation fee: Free
Languages: Japanese only
Capacity: 100 people
Hosted by: NCD Alliance Japan (Secretariat, Health and Global Policy Institute)
Target audience: For this seminar, we would like to invite anyone who
– Is currently participating in the policy formation process
– Wants to participate in policy making in the future
– Wants to make their voice heard in policy making, but is unsure how to do so
– Is interested in healthcare policy, whether living with a disease or not
18:30 – 18:35: Opening remarks
Yuko Imamura (Manager, HGPI)
18:35 – 19:15: Lecture: “The Significance of Reflecting the Voices of Patients and Other Healthcare Beneficiaries in Policy”
Kyoko Ama (Representative, Children and Healthcare Project)
19:15 – 19:40: Question and answer session
19:40 – 19:45: Closing remarks
Ryoji Noritake (CEO and Board Member, HGPI)
Ms. Kyoko Ama (Representative, Children and Healthcare Project / Fellow, Health and Global Policy Institute)
Ms. Kyoko Ama was born in Tokyo in 1974. After graduating from a junior college in Tokyo, she completed a Japanese language teacher training course and worked as a Japanese language teacher at Universiti Malaysia Sarawak. After returning to Japan, she joined the SOCIETY for Promotion of Japanese Diplomacy, an auxiliary organization of the Japanese Ministry of Foreign Affairs. There, she was involved in activities related to international exchange and cooperation. She then began operating a restaurant with her husband. In April 2007, Ms. Ama established “Shiro! Shoni Iryo Mamoro! Kodomo-tachi” association with the goal of improving the state of care for infants and young children by disseminating information on child and infant care to parents and guardians. The association became a general incorporated association called “Shiro Shoni Iryo Mamoro Kodomo-tachi” in July 2012. It conducted 160 lectures to over 6,000 parents and guardians of infants and young children and began giving corporate seminars and lectures on parenting at OB-GYNs in 2018. It was dissolved on April 30, 2020. Ms. Ama also teaches childcare and childrearing as a part-time lecturer in a non-degree graduate program on early childhood education at Tokyo Rissho Junior College. She is the mother of three children.
Her other positions include Member, Roundtable on Promoting the Effective Use of Healthcare, Ministry of Health, Labour and Welfare (MHLW); Member, Study Group on the Ideal Healthcare System for Emergencies and Disasters, MHLW; Member, Study Group on Emergency Medical Services, Fire and Disaster Management Agency, Ministry of Internal Affairs and Communications (MIC); Member, Advisory Committee on Emergency Medical Services, Tokyo Fire Department; Member, Council on Pediatric Care, Tokyo Metropolitan Government; and Member, Council for Promoting Public Awareness for Antimicrobial Resistance (AMR) Countermeasures, Cabinet Secretariat. In addition to serving on many committees in the past.
■Introducing NCD Alliance and NCD Alliance Japan
NCD Alliance was launched in 2009 by four international federations: The International Diabetes Federation, the International Union Against Cancer, the World Heart Foundation, and the International Union Against Tuberculosis and Lung Disease. NCD Alliance is a collaborative platform for the fight against NCDs that currently consists of about 2,000 civil society and academic groups in around 170 countries with the mission of eliminating preventable suffering, disability, and death caused by NCDs. Since 2013, NCD Alliance Japan has served as the Japanese branch of NCD Alliance and has provided forums for holding multi-stakeholder discussions and for promoting the importance of civil society’s role in the fight against NCDs.
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