Patient Cooperation Committee The 36th and 37th Patient Organization Seminars

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Lecture 1: Activities of young people-led patients' groups, "Intractable Disease NET.

Mr. Yu Ikezaki, the representative of RDing Fukuoka, was diagnosed with chronic inflammatory demyelinating polyneuropathy in 2007, and established the Rare Disease Day Fukuoka Executive Committee in 2013 when he was a student at Kyushu University. He then faced various employment challenges as a person with an intractable disease, which led him to launch Rare Disease NET.RDing Fukuoka the following year in 2014, with the aim of promoting understanding of intractable diseases in Fukuoka Prefecture and providing employment support for people with intractable diseases. Today, with members mainly in their 20s and 30s, the group is working to solve issues faced by young patients with intractable diseases in particular, cooperating with senior patient group members who have knowledge and experience in patient group management, etc., to carry out activities that transcend generations and diseases.

In this lecture, he introduced the activities of NET.RDing Fukuoka, the common issues faced by young patients with intractable diseases that have come to light through these activities, and the efforts being made to resolve these issues. RDing Fukuoka also shared the results of a survey of social network services (SNS) used by young people, and gave a thought-provoking presentation on the true feelings of young (concerned) patient groups and how to get young people interested in patient group activities.

Representative of Intractable Disease NET.RDing Fukuoka
Mr. Yu Ikezaki

1. management and activities of the association, which is mainly composed of young people

(1) Raising awareness of World Rare and Intractable Disease Day (RDD)

Challenges faced by (young) people with intractable diseases as a result of the RDD event

  • No place for young people to raise their voices
  • Aging of patient groups, young people stopping at SNS
  • Limitations of the lecture and exchange meeting format (infrequent local events, fixed time/place, etc.)
  • Lack of a place to talk about issues related to employment and daily life (lack of interaction with others with the same disease, wanting to know what other people working are doing, wanting to know how to communicate and talk to others, wanting to talk casually about love life and school, etc.)

What we learned through the RDD event

We found that there is a need for a place where people can casually participate without limiting their disease, where they can share their life-level concerns and information, and where they can be connected to support if necessary. This led to the holding of the Intractable Disease Café.

(2) Intractable Disease Café

What is the RDD Café?

  • Peer support (*1) is available.
  • No application is required
  • It is an open place that anyone can access
  • Regardless of the disease
  • Specialized consultation is available
  • 1
    Support by peers who share the same symptoms and concerns and are in a similar position

The Intractable Disease Café has been held nine times over the past four years, from 2016 to 2019, attracting 20 to 40 people each time, for a total of nearly 300 participants. Utilizing open spaces at universities and businesses, the cafes are attended by a diverse range of people, not only those with intractable diseases, but also those with cancer, developmental disabilities, and others. Although not targeted at young people, the participants are relatively young, with an average age of 35.9 years old.

What we have learned through holding the RDD Café

  • Young people with intractable diseases who do not belong to a patients' group also have many potential problems.
  • There are young people who not only share their problems but also want to do something to solve them.
  • The problem of intractable diseases is not only a problem of intractable diseases (illnesses).
  • There are young people who feel that they may be able to do something with others and want to interact with other young people, even though it may be difficult to do it alone.

The younger generation is required to correctly recognize various issues surrounding intractable diseases, to think together, to proactively communicate to society, and to create such a forum. This is what led to the holding of the Intractable Disease Mirai Conference.

(3) Intractable Disease Mirai Conference

What is the "Mirai Conference on Intractable Diseases

  • A place to exchange opinions for people with intractable diseases (regardless of the disease) between the ages of 18 and 39
  • The purpose is to understand their own issues and the issues of others, to proactively resolve issues as a person affected by the disease, and to communicate these issues to society.

What was gained from the RDD Mirai Conference

The perspective of young patients, who had focused on solving issues on an individual level, has been broadened. For example, discussions evolved into discussions on social-level issues, such as expanding understanding and awareness of intractable diseases in compulsory education and higher education.

2. collaboration with senior groups

(1) Current status of collaboration

  • Daily interaction and information exchange with members of existing patient associations in Fukuoka, Saga, etc.
  • Aging of patient groups, young people stopping at SNS
  • Collaborate with the Research Group for Intractable Disease Support established in Kitakyushu, and share event information on Facebook, etc.

(2) Synergy through collaboration

Transmission of information

  • Young people of the same generation as yourself are sending out information → "Let's go there" awareness is increased.
  • The message is sent out by an organization that you know well → Increased credibility

Operation

  • Utilize the knowledge gained from the overwhelming experience of senior patient groups
  • Utilize the network of senior patient associations

Visitors

  • Introduce patient groups, support organizations, etc. to young people who are not members of patient groups

3. true feelings of young people (organizations)

  1. I want to search for any matter and participate in it after knowing (understanding) what it is about.
    →(Patients' groups should send out information about their meetings (photos, etc.) on their websites and newsletters, etc., to lower the hurdle for young people to participate in patients' groups a little bit.
  2. They are worried that they may not be able to help out or run the meetings. They are worried that they may have to help and manage the association.
    →Think about getting them to participate first.
  3. I do not have a good understanding of the intractable disease system, national movements, and disease information, and I am not sure if I am allowed to express my opinions (I feel uneasy).
  4. They think that the Internet is sufficient for disease information.
    →By providing information that can only be obtained at the Patients' Association and effective use of the website, the way young people perceive the website will change.
  5. I am referred to as being "young" even though I have the courage to attend a patient meeting (for example, I don't want people to say things like, "You are still young," "It's hard to be young," or "I am glad to see a young girl (boy) here.)

4. how to get young people interested in our activities

  1. More than 60% of the website is accessed via smartphones and tablets. It may be a good idea to consider smartphone compatibility for information transmission media, rather than websites optimized for desktops only.
  2. Nearly 75% of the 18-44 year olds accessed the website. It would also be effective to devise ways to disseminate information tailored to each generation.
  3. Facebook use is on the decline, while Twitter, Instagram, and LINE are increasingly being used by this generation; LINE usage is over 80% among teens and over 90% among those in their 20s. The video viewing rate among teens also exceeds 90%, with nearly half of them watching videos daily. Opportunities for the younger generation to come into contact with long-form content are decreasing rapidly, and it may be necessary to create content for a generation with these characteristics.

5. summary of the actual situation of young people/groups

(1) Dissemination

  • We need to think about how to transmit information in a way that matches the target audience.
  • For example, instead of sending out the same kind of information on Facebook and Twitter, we could use different media for different purposes, such as official information on Facebook and more casual information on Twitter that is closer to the users.
  • Use SNSs that are used by the demographic you want to access, set posting rules, and ask young people to post.

(2) Management

  • Each association does not have to do the same thing, but should combine their areas of expertise and collaborate with each other.
  • Easy access to people of the same generation as the organizers and the generation that shows up on the website (same as the stores)
  • We want to hear from the youth themselves about their needs and opinions

(3) How to get young people interested?

  • Try to create a place where everyone can express any opinion, even if they are not knowledgeable about the disease or the country's systems and trends, and where each opinion and value is respected
  • We try to make them realize that their existence and the stories they have told about their illnesses are meaningful to society, the community, and the region.
  • Since the term "youth" includes a wide range of age groups, each with different interests and issues, it is effective to hold opinion exchange meetings for each age group.

6. summary

  1. Since it takes courage and energy to break out of a social networking community and become active, start with a wide gateway and a fun and interesting place to start. Prepare an environment where young people can fully demonstrate their planning ability.
  2. Respect the free values and opinions of young people and create a safe place for them to talk. It is important not to stop after the project is completed, but to receive feedback from the young people and work together to create a better project.
  3. In order to realize sustainable operation of patient groups, it is important to "add youth's unique perspectives to activities and make patient group activities more diverse and meaningful.

Lecture 2: "Our Patient Group Activities: The Past 10 Years, the Future 10 Years

Ms. Yoko Matsumoto, President of Ehime Cancer Support Orenji no Kai, a non-profit organization (NPO), joined the Ehime Cancer Control Promotion Council in 2007 as a cervical cancer patient. At that time, she felt the need to gather the diverse experiences and voices of her peers, rather than just one person's experiences and opinions, and decided to establish a patient group. The following year, in 2009, the group became a non-profit organization, and is currently engaged in peer support activities for cancer patients in Ehime Prefecture (opening salons in towns, implementing the "You are not alone" project, etc.), projects commissioned by the government (cancer patient satisfaction surveys, etc.), and collaborative projects with medical institutions.
In this lecture, we will introduce how we can connect our activities to the next generation by looking back on the management of Orenji-no-kai from the perspectives of people, money, and activities, using the two keywords, "What will not change: You are not alone" and "What will change: I am not alone" for the sustainable management of patient groups. He also introduced how to connect the activities of patient associations to the next generation. At the end of the lecture, he emphasized the importance of considering "what we should do as an organization" rather than "how to continue the operation of the organization" so as not to confuse "means" with "purpose.

Specified Nonprofit Corporation
Ehime Cancer Support Orenji no Kai President
Ms. Yoko Matsumoto

1. national cancer control measures and patient group activities 2.

In 1984, the 10-Year Comprehensive Strategy Against Cancer was formulated, the Basic Law on Cancer Control was enacted in 2006, and the revised Basic Law on Cancer Control was enacted in 2016. The repeated efforts of patient groups (organizations concerned) played a major role in the revision of the Basic Law, which was featured in the news at the time under the headline "Patients' Long-cherished Wishes Received.
In the Basic Law on Cancer Control, the Council for the Promotion of Cancer Control was established to make decisions on national cancer control measures, and "representatives of cancer patients and their families or bereaved family members" were included in the Council.
In 2018, the Cabinet approved the third phase of the Basic The Third Basic Plan for the Promotion of Cancer Control decided by the Cabinet in 2018 included "cooperation with patient groups, etc." for the first time as one of the items necessary for the comprehensive and systematic promotion of cancer control measures.

2. the activities of the INNOVATION

(1) "Cancer Patient Satisfaction Survey" (commissioned by Ehime Prefecture)

Target: Patients hospitalized at a base hospital for cancer treatment in Ehime Prefecture
Responses: 512
Period: July 20 - September 20, 2010
Method: Paper-based, distributed and collected directly at each hospital
Results:

  • The survey highlighted the fact that while most people tell their doctors or nurses about "pain," more than half do not tell their doctors or nurses about the emotional content of "high anxiety and feeling depressed," but instead hold it in.
  • The survey also indicated that it is helpful to consult with other cancer patients who have similar experiences.
  • More than half of the respondents were pleased with "the attitude and encouragement of doctors, nurses, and medical staff" and "the contact and support of other cancer patients" as things that made them happy during their recuperation period. Comments such as, "Talking to my seniors in the same room and people with the same disease relieved my anxiety," suggested the importance of having people with the same disease sympathize with them.

(2) Salons in town for people facing cancer

  • Subsidized by Ehime Prefecture
  • Off-site, weekdays from 10:00 to 15:00, special events on weekends, and peer supporters are also available.

(3) Not Alone Project

  • Cooperation: One World Project Supporters
  • National Federation of Cancer Patients' Associations
  • Support project for cancer patients affected by the torrential rain disaster in the Nanyo region of Ehime Prefecture
    Send wigs...30 wigs
    Let's donate care items...140,269 yen donated by 20 individuals and 2 organizations

Activities of the National Federation of Cancer Patients' Organizations

Established in 2015 with the aim of contributing to the improvement of cancer care and the construction of a society where people can live in peace even after having cancer, the organization currently has 40 member organizations.
One of the pillars of our activities is policy advocacy (e.g., requests for "no smoking in buildings," requests for laws and regulations to ensure that patients do not suffer social disadvantages due to the acquisition of genetic information and its inappropriate handling in the advancement of genomic medicine, etc.).
Co-hosting with the Japan Council of Associations of Intractable Diseases and Disease (JPA) and holding in-hospital meetings (e.g., holding round tables on the patient-designated therapy system and discussing the system from the patient's perspective).
We have held an annual Cancer Patient Conference since 2015 as a place to present and learn about the activities of cancer patient groups; at the 2019 Cancer Patient Conference, we also discussed the management of patient groups. It was suggested that how to respond to changing needs and the need to commercialize income-generating activities. It was discussed that it is important to work as partners on an equal footing, not just in a relationship where donations are received from JPMA and pharmaceutical companies to fund operations.

Looking back on INNERNO KAI

(1) People

Current Status and Issues

  • Since its establishment in 2008, the board members have remained largely unchanged.
  • Shared values are shared, but it is difficult to come up with new ideas.
  • Due to the resignation of several board members, the board chair (Mr. Matsumoto) has taken on most of the workload.

Countermeasures

  • Create "associate" board members → Attend board meetings, bring new perspectives
  • Divide the duties of the board chair→Eliminate the burden and avoid risk
  • Introduced a new system for wage calculation, etc. → reduced burden on human resources

(2) Money

Current Status and Issues

  • Slowdown in membership growth → decrease in membership fee income
  • Uncertain donations → difficult to budget
  • Reliance on projects commissioned or subsidized by the prefectural government → fear of project termination
  • People think it is a charity project

Countermeasures

  • Need to conduct income-generating projects (commercialization) (however, currently they have their hands full with projects commissioned by the prefectural government, etc., and lack manpower and ingenuity)

(3) Activities

Current Status and Issues

  • Projects commissioned or subsidized by the prefecture→Many restrictions
  • Original projects → "stability" through monthly meetings (alternating lectures and social events), operation of town salons, etc.
  • Changes in needs: Increased opportunities for interaction, such as hospital salons, etc., increased loose connections through SNS, etc., changes in balancing outpatient treatment/work, etc.

Countermeasures

  • Collaboration with other organizations leads to new perspectives and awareness.
  • Collaboration with the "Ai GIVER project" (Ehime Shimbun), a project that aims to provide correct information about cancer and create a more comfortable living environment for cancer survivors and their families, and other organizations (organizations that support children with chronic pediatric diseases and patient support groups for children)
  • Submitted a written request to the Ehime Prefecture Cancer Control Promotion Committee for "support for cancer patients in the pediatric and AYA age groups" in collaboration with other organizations.

Summary

The idea was to increase the number of associates and to collaborate with them in order to solve the problem of holding the board chairperson, the mannerism of activities, and the lack of manpower.
We used to focus only on the inside of the organization, but we have realized the importance of looking outside of the organization and are now working very hard on this. I hope this will change our perspective a bit.

Opinion exchange

Let's talk together! About human resource development to connect to the next generation"
-What we can practice from tomorrow for successor development

Representative, Intractable Disease NET.RDing Fukuoka Mr. Yu Ikezaki
Yoko Matsumoto, President, Ehime Cancer Support Orenji no Kai (NPO)

Mr. Ikezaki and Mr. Matsumoto moderated a group work session on the theme of "Succession Planning. Taking a cue from Mr. Ikezaki's and Mr. Matsumoto's lectures, each participant presented his or her own thoughts and ideas on what can be implemented from tomorrow for "succession planning" and "sustainable operation of patient groups.
Each table presented their own ideas and thoughts on what they can do tomorrow to nurture successors and run a sustainable patient organization. The exchange of opinions was very active. The sharing of issues and ideas that transcended disease boundaries provided an opportunity to deepen exchanges among the patient groups.
Mr. Ikezaki commented that "it is important to establish and operate a policy on what information to transmit and what not to transmit, as it is important to transmit/manage accurate information when using SNS. Mr. Matsumoto also commented, "I was impressed by the comment, 'Let's go to the young people. We tend to wait and think, 'They won't come, they won't come,' but it is important to take a leap into the young people's mindset. It is also a good idea to use video clips. He added, "It is very important to have young people come and expand the age range of the organization, but it is also important to stop and think, 'Why is this necessary for your organization? This is also a question we should ask ourselves.

Scene during information exchange

Provision of information

Video Letter - Reconstruction and Prospects 3 years after the Kumamoto Earthquake

Mr. Yasuo Nakayama, Representative, Kumamoto Intractable Disease and Disease Organization Association

Mr. Nakayama, who gave a lecture titled "Response to Patients with Intractable Diseases in the Kumamoto Earthquake" at the Patients' Group Seminar three years ago, presented a video letter to the audience, explaining the status of reconstruction in Kumamoto three years after the earthquake, Kumamoto's efforts after the disaster, patient groups, and a message to JPMA/pharmaceutical companies.

1. the current state of reconstruction

If we score 0 immediately after the earthquake, the current state of reconstruction is about 90 points, especially in terms of hardware. The number of people living in public housing complexes and temporary housing is currently 8953. The number of people living in evacuation shelters has been decreasing significantly, as there were almost 40,000 people at the time of the earthquake. Medical services have almost recovered smoothly, and patients are back to a state where they are not inconvenienced. However, patients with intractable diseases who were affected by the earthquake still have a lingering fear of small earthquakes and physical sensations, and they still live in a state of trembling when there is a tremor of intensity 5 level.

2. efforts in Kumamoto after the disaster

It is not enough for the intractable disease organizations to do their best only at the time of the disaster, but it is important how well they can create a "system" to prepare for possible future disasters. It took two years, but we were able to get the government to allocate a budget for the handbook, and they cooperated with us in the form of a committee.
Soon after the earthquake, a questionnaire survey was conducted, and using the results of the survey, the handbook was created based on the information on how the patients and their families were troubled and what kind of support they needed at that time (Fig. 1).

Figure 1: Disaster Preparedness Handbook for Patients with Intractable Diseases and Their Families

We believe that the role of patient groups is to preserve the mechanism and that it is important for all residents of the prefecture to be able to share the deliverables. What was troubling at the time was that when patients with intractable diseases evacuated, they could not be found, and no matter how much they appealed, they were not understood about their illnesses. To prevent such situations from occurring, we created help cards and distributed them to people with intractable diseases, developmental disabilities, and other disabilities. The handbook contains information about the help cards and who is considered to be a person in need of assistance. These are also available on the websites of the prefectural government and the Intractable Disease Consultation and Support Center.

3. message to patient groups and patients

Earthquakes, landslides, floods, and other disasters are occurring all over Japan, and earthquakes can happen at any time. Unfortunately, however, there are many problems that we see that evacuation bags to take with you in case of anti-disaster are not kept in every house, even though we know about them as knowledge. These may be necessary not only for our own health, but also for our lives. Why? Because only you know your body, only you know the medicines you need, and only you know the first aid you need when you get sick. That is why we would like you to be prepared with tools for "self-help" in the sense of protecting yourself.

Message to JPMA and pharmaceutical companies

Patient groups are now facing the following challenges: lack of board members, difficulty in finding new members, and declining membership. What we want to do is provide counseling to people suffering from this disease and leave them with some tools.
You might think that what the Patients Association is looking for from a company is money, but that is not all. Yes, there is that, but they are also looking for "knowledge" and "tips. They want the know-how and advice of pharmaceutical companies. As we enter the era of 2022, we would like to take our existing relationship with each other one step further and work together to create something useful for patients and people with disabilities in Japan, something that will last for 10, 20, and hopefully 100 years.

Summary of the entire seminar

Mr. Yoshihiro Yoshinaga, Chairperson of the JPMA Patient Cooperation Committee, expressed his appreciation for the unprecedentedly active exchange at the JPMA Patient Cooperation Seminar, which has been held since 2000, and for the seminar being a fitting opening to the first year of 2028. The seminar was a great success, providing an opportunity for active exchange of information between patient groups and between Dr. Ikezaki and Dr. Matsumoto.

(Takashi Minazawa, Patient Group Seminar TF Leader, Patient Cooperation Committee)

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