Citizens, Patients and Musubu The 36th and 37th Pharmaceutical Manufacturers Association of Japan (PMAJ) Patient Organization Seminar Patient Group Activities in the Era of 2022: Dreams for the Next Generation and Sustainable Management of Patient Groups
The Pharmaceutical Manufacturers Association of Japan (PMAJ) Patient Organization Collaboration Promotion Committee held the 36th and 37th "PMAJ Patient Organization Seminar" on October 29, 2019 at Osaka Daiichi Hotel (Kita-ku, Osaka) and on November 29, 2019 at Keidanren Kaikan (Chiyoda-ku, Tokyo), respectively. At this year's seminar, under the theme of "Patient Group Activities in the Age of 2022: Considering Dreams for the Next Generation and Sustainable Patient Group Management," Yu Ikezaki, representative of the Intractable Disease NET RDing Fukuoka, spoke about patient group activities led by young people and the promotion of participation of young people in patient group activities. Ms. Yoko Matsumoto, President of Ehime Cancer Support Orenji no Kai, a non-profit organization (NPO), gave a lecture on past and future activities of patient groups. Mr. Yasuo Nakayama, representative of the Kumamoto Council of Associations for Intractable Diseases and Diseases, who gave a lecture at the Patients' Group Seminar three years ago, gave a video letter on the reconstruction situation in Kumamoto three years after the earthquake and his subsequent activities. In addition, this year, as the first attempt of the Patient Organization Seminar, "Let's Talk Together! Human Resource Development for the Next Generation: What We Can Do Tomorrow to Nurture Successors", a very active exchange of opinions took place. About 60 participants at the Osaka venue and about 100 participants at the Tokyo venue enjoyed a very lively meeting that deepened exchanges among the participants.
A scene from the Tokyo venue
A scene from the Osaka meeting
Lecture 1 Activities of young people-led patient groups: "Activities of the intractable disease NET.RDing Fukuoka
Mr. Yu Ikezaki, Representative, Intractable Disease NET. RDing Fukuoka
Mr. Yu Ikezaki, the representative of Intractable Disease NET. 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 establish the Intractable 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, the group is led by members in their 20s and 30s, and is working to solve issues faced by young patients with intractable diseases in particular, while cooperating with senior members of patient groups who have knowledge and experience in running patient groups and other activities that transcend generational and disease boundaries.
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, and the efforts being made to resolve them. The results of a survey of social network services (SNS) used by young people conducted by NET. RDing Fukuoka were also shared, and the presentation was full of suggestions on the true feelings of young (concerned) patient groups and how to get young people interested in patient group activities.
Management and activities of young people-centered organizations
(1) Awareness of World Rare and Intractable Disease Day (RDD)
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Challenges faced by (young) people with intractable diseases as revealed through the RDD event
- There is no place for young people to raise their voices
- Aging of patient groups, young people stopping at SNS
- Limitations of lectures and social gatherings (infrequent local meetings, fixed time and place, etc.)
- Lack of places to talk about issues related to employment and daily life (lack of interaction with other people with the same disease, want to know what other people working are doing, want to know how to communicate and talk to others, want to feel free to talk about love life and school, etc.)
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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
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What is the Intractable Disease Café?
- Peer support*1 is available
- No application is required
- Open and accessible to all
- Regardless of the disease
- Specialized consultation is also available
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1Support by peers who have the same symptoms and concerns and are in a similar position
The Intractable Disease Café has been held 9 times over the past 4 years from 2016-2019, attracting about 20-40 people each time, with a total of just under 300 participants. Utilizing open spaces at universities and companies, 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.
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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) Mirai Conference on Intractable Diseases
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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 one's own issues and the issues of others, to proactively resolve issues as a person with the disease, and to communicate these issues to society.
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What was learned 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.
Collaboration with senior members
(1) Current status of collaboration
- To exchange information with existing patient groups in Fukuoka, Saga, etc. on a daily basis.
- Support and advice as observers and advisors in the implementation of the intractable disease café and Mirai Conference.
- Collaborate with the Study Group for Intractable Disease Support established in Kitakyushu, and share event information on Facebook.
(2) Synergy through collaboration
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Transmission of information
- Young people of the same generation as ourselves are sending out information → Increased awareness of "let's try it".
- Organizations that are well-known to the public are disseminating information → increased credibility
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Operation
- Utilize the knowledge gained from the overwhelming experience of senior patient groups
- Utilize the network of senior patient associations
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Visitors
- Introduce patient groups, support organizations, etc. to young people who are not members of patient groups
3. true feelings of young people (organizations)
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I would like to search for any matter and participate after knowing (understanding) what it is about.
Patient groups can lower the hurdle for young people to participate in patient groups a little by disseminating a little information about the meetings (photos, etc.) on their websites and in newsletters, etc.
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I am worried that I might have to help or manage the café. I am worried that I might not be able to help or manage the meeting.
Think about getting them to participate first
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They do not have a good understanding of the intractable disease system, national movements, and disease information, and do not know whether they can express their opinions (they feel uneasy).
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They believe that information on the disease is sufficient on the Internet.
Providing information that can only be obtained at patient meetings and effective use of the website will change the way young people perceive the meetings.
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(For example, we don't want people to say things like, "It's nice that you are still young," "It's hard to be young," "It's nice to see young girls (boys) here," etc.).
4. how to get young people interested?
- 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.
- Nearly 75% of the 18-44 year olds accessed the website. It would be effective to devise ways to disseminate information tailored to each generation.
- Facebook use is on the decline, while Twitter, Instagram, and LINE use is on the rise among this generation; LINE use 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.
Summary of the actual situation of young people/groups
(1) Transmission
- Need to think about how to tailor the message to the target audience
- Instead of sending out the same message on Facebook and Twitter, for example, official information on Facebook and casual information closer to the users on Twitter, etc., it may be better to use different media for different purposes.
- Use SNSs that are used by the demographic you want to access, set posting rules, and ask young people to post.
(2) Operation
- 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 do we 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 help them realize that their existence and the stories they have told about their illnesses are meaningful to society, the community, and the region.
- Since young people include a wide range of ages and have different interests and challenges, it is effective to hold opinion exchange sessions for each age group.
6. summary
- Since it takes courage and energy to break out of the 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.
- 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 something even better.
- In order to realize sustainable operation of patient groups, it is important to "add youth's unique perspectives to the activities and make them more diverse and meaningful.
Lecture 2 Our Patients' Group Activities: The Past 10 Years and the Future 10 Years
Ms. Yoko Matsumoto, President, Ehime Cancer Support Orenji no Kai (NPO)
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, it was incorporated as 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.
1. national cancer control measures and activities of patient groups
The 10-Year Comprehensive Strategy Against Cancer was formulated in 1984, 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 picked up in the news at the time under the headline "Patients' Long-cherished Wishes Received.
In the Third Basic Plan for Cancer Control Promotion approved by the Cabinet in 2018, "cooperation with patient groups, etc." was included for the first time as one of the items necessary for the comprehensive and systematic promotion of cancer control.
2. the activities of the Ippon no Kai
(1) "Cancer Patient Satisfaction Survey" (commissioned by Ehime Prefecture)
| Subject |
Patients hospitalized at base hospitals for cancer treatment in Ehime Prefecture |
|---|---|
| Answer |
512 patients |
| Period |
July 20 - September 20, 2010 |
| Method |
Paper-based, distributed and collected directly at each hospital |
| Results |
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(2) Town salons for people facing cancer
- Subsidized project from Ehime Prefecture
- Operated outside the hospital from 10:00 to 15:00 on weekdays, with special programs on weekends, also supported by peer supporters
(3) "You are not alone" project
| Cooperation |
One World Project Supporters |
|---|---|
| Supported by |
National Federation of Cancer Patients' Associations |
Activities of the National Federation of Cancer Patients' Associations
Established in 2015 with the aim of contributing to the improvement of cancer care and the construction of a society in which people can live with peace of mind even if they have cancer, the association currently has 40 member organizations.
One of the pillars of its 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 course of advances in genomic medicine, etc.).
Co-hosting with the Japan Council of Associations of Intractable Diseases and Disease (JPA) and holding in-house meetings (e.g., holding a round table 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 pharmaceutical cooperatives and pharmaceutical companies to fund operations.
4. review of the activities of i-roni
(1) People
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Current Status and Issues
- Board members have remained largely unchanged since its establishment in 2008
- Shared values, but new ideas are difficult to come up with.
- Multiple resignations of board members have left the president (Mr. Matsumoto) with most of the workload.
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Measures
- Set up "associate" board members → Attend board meetings and offer opinions from new perspectives
- Share the board chairperson's duties → Elimination of overburden and avoidance of risk
- Introduced a new system for wage calculation, etc. → Reduction of human burden
(2) Money
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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
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Measures
- 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
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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 are not seen → Increased opportunities for interaction, such as hospital salons, etc., increased loose connections using SNS, etc., changes in balancing hospital treatment/work, etc.
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Measures
- 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.
(4) 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 little.
Opinion exchange
Let's talk about it together! Human Resource Development for the Next Generation
～What we can do from tomorrow to nurture our successors
Representative, Ehime Cancer Support Orenji no Kai, NPO
NPO Ehime Cancer Support Orenji no Kai, President Yoko Matsumoto, President Yoko Matsumoto, President
A discussion (group work) on the theme of "Succession Planning" was moderated by Mr. Ikezaki and Mr. Matsumoto. Taking a cue from Mr. Ikezaki's and Mr. Matsumoto's lectures, each participant presented his or her thoughts and ideas on what can be implemented from tomorrow for "succession planning" and "sustainable management 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. Also, it is 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 of information exchange
Provision of information Video Letter: Reconstruction and Prospects Three Years after the Kumamoto Earthquake
Mr. Yasuo Nakayama, Representative, Kumamoto Intractable Disease and Disease Organization Council
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 on the state of reconstruction in Kumamoto three years after the earthquake, Kumamoto's efforts after the earthquake, patient groups, and a message to the Pharmaceutical Manufacturers' Association and pharmaceutical companies.
1. the current state of reconstruction
If the score immediately after the earthquake is zero, the current reconstruction status is about 90 points, especially in the hard aspects. 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 intractable disease organizations to work hard only at the time of the disaster, but it is important to see how well we 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 the results of the survey were used to create the handbook 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 system, and that it is important for all residents of the prefecture to be able to share the results of the survey. 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.
4. message to pharmaceutical associations and pharmaceutical companies
Patient organizations are currently facing the following problems: 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 2025, 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 the next 10, 20, and hopefully 100 years.
Summary of the Seminar
Mr. Yoshihiro Yoshinaga, Chairperson of the Pharmaceutical Cooperative Association of Japan (PACJ) Patient Groups Cooperation Promotion Committee, expressed his appreciation for the "PACJ Patient Groups Seminar," which has been held since 2000, for the unprecedentedly active exchanges that took place at the seminar, which was a fitting opening for the first year of 2022. The seminar was a great success, providing an opportunity for active exchange of information among the patient groups and between Dr. Ikezaki and Dr. Matsumoto.
( Takashi Kanazawa, TF Leader, Patient Organization Seminar, Patient Organization Collaboration Promotion Committee)