Patient Organization Collaboration Promotion Committee The 32nd and 33rd Patient Organization Seminars

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Making Use of Patients' Perspectives in Medicine: What We Can Do Now as Patients".

Information: Big Data in the Medical and Health Fields - Utilization for Medical Treatment and Drug Discovery

Changes in the Medical Field

I believe that the introduction of electronic medical records and the sharing of medical information will lead to more cooperation among medical institutions and appropriate services. In addition, telemedicine medical care services (where patients can receive medical examinations and services via PCs and smartphones without having to go to the hospital) will also become possible in the future. In the revision of medical fees in April 2018, there is also a move to gradually incorporate telemedicine into Japanese healthcare.

Collection and utilization of various health information

Information that has been difficult to measure in the past (breathing, voice, eye movements, etc.), information recorded on paper (subjective symptoms, medication information, etc.), and measurement data at hospitals (blood pressure, ECG, and other test data) can now be collected visibly and frequently. In addition, the use of "disease apps" and other applications to manage information on daily diet, exercise, etc., is making it possible to accurately convey information at medical institutions based on the patient's consent.

Genomic Medicine and Preemptive Medicine

Efforts to utilize genomics (data obtained by analyzing genes) in medicine have also begun. Currently, the use of genomics is limited to the treatment of cancer and other diseases, but I believe that it will be expanded to a variety of diseases in the future.
In addition, there are promising fields such as preemptive medicine (preventing the occurrence of disease by eliminating various risks leading up to the onset of disease), and the use of big data on medical health is expected to advance these fields.

Introduction of LHS (Learning Healthcare Systems)

Some of the most advanced medical institutions in the U.S. have begun to collect medical data on various patients, analyze it by disease and by treatment using artificial intelligence, etc., and obtain information on treatment effects and side effects of drugs. In the near future, I believe that in general medical care as well, innovations in medicine and medical research will be promoted, such as obtaining new discoveries from routine data and applying them to medical treatment.

For utilization of medical information (from personal information protection to the Next Generation Healthcare Infrastructure Act)

While a variety of medical information is being collected, since medical information contains personal information, a system is being developed to utilize information that has been processed in such a way that individuals cannot be identified. Personal information will be provided to pharmaceutical companies, research institutions, etc. as anonymously processed information by authorized business operators. In addition, the government is promoting the development of a healthcare information infrastructure centered on a database that integrates personal health, medical, and nursing care information in order to provide optimal healthcare tailored to individual circumstances while taking personal information into consideration.

New Health, Medical Care and Nursing Care" utilizing Big Data

With the technological progress of the 4th Industrial Revolution and the utilization of big data, remarkable developments (paradigm shift) are expected in the fields of health, medical care, and long-term care. We must aim to realize this in the near future. I believe that the basis of Big Data to be utilized in the future in medicine will be the data of each individual patient, and that this is exactly the kind of medicine in which the patient participates and in which the patient plays a central role.
It is also necessary to utilize Big Data, which accumulates individual information, to discover the next revolutionary medical treatment and next-generation new drugs, and I believe it is important to support all the stakeholders involved in this process.

Lecture 1: From 27 years of efforts as a patient support group to utilize patients' perspectives

The origin of COML's activities and its penetrating beliefs

COML was launched as a group working on the side of patients. In doing so, we were sometimes defended by medical professionals who thought that we were an organization that made harsh demands on the medical field. We even received phone calls saying, "We don't want you to create smart patients.
The starting point of COML's activities was not to make demands on the medical staff, but to question the patients who were passive and left to their own devices at that time, asking, "Is that right? Illness is something that affects our lives and our life, and is it okay to leave everything to the medical professionals, even if they are experts? We have been conducting our activities with the idea that patients themselves are the "protagonists of life" and "responsible for their bodies" and that they should "be wise patients" and that "patients and medical professionals should work together, not against each other. In our activities, we have been particular about the Chinese character for "collaboration. This is because I have heard that this kanji means "people in different positions fulfilling their respective roles in pursuit of the same goal. It is not only the efforts of medical professionals that will improve the effectiveness of treatment. Our activities are not only to leave it up to the medical professionals, but also to encourage patients to "think about what efforts they can make" and "become patient citizens who can actively participate in treatment and make proposals to solve problems. In our activities, we have been focusing on how to establish communication between patients and healthcare providers in the medical field. It is easy to complain and complain, but we have been working with the desire to become patient citizens who can calmly make suggestions and proposals to the medical field.

Activities utilizing the patient perspective - simulated patient activities, hospital expeditions, telephone consultation

One of the activities that we have conducted from the patient's point of view is the Simulated Patient Activity (SP Activity). This activity has been conducted since 1992. The Objective Self-Completion Examination (OSCE), which includes a medical interview, is mandatory in medical, dental, and pharmaceutical schools, and we participate in medical education by dispatching mock patients to the examination sites to act as medical interview partners. Preparations are also currently underway at the School of Medicine and the School of Dentistry to prepare for the Post-CC OSCE (OSCE after clinical training), which will begin in 2020.
We are also engaged in hospital exploratory activities. This activity was started in 1994 in order to improve hospitals from the viewpoint of patients, who are the users of hospitals, and to communicate the issues that hospitals face through visits to actual hospitals. Recently, we have been approached by large hospitals such as Keio University Hospital and Chiba University Hospital. This is a result of the fact that even large hospitals feel the need to adopt a patient-oriented approach, and we feel that the world's momentum is changing.
As a pillar of our daily activities, we also provide telephone consultations from the standpoint of patients and their families. Since around 2000, medical professionals have also begun to consult with us after learning of our position as a consultation service for patients and their families, and we have become a kind of "yorozu kenkyu" (consultation service for all kinds of issues).

Birth and distribution of "10 Articles to See a Doctor" created at the request of the Ministry of Health, Labor and Welfare

In 1997, the Ministry of Health, Labor and Welfare (MHLW) asked COML to participate in a research group to create a set of "10 Articles to Ask Doctors" as a measure to further promote informed consent, which would include at least the following points for patients to ask doctors. COML was involved from the drafting stage, but we submitted a draft of "10 articles to ask a doctor," which was not "Ask a doctor," but rather a summary of the mental attitude when seeing a doctor, and worked hard to compile the draft. After its creation, the MHLW's press release was distributed by Kyodo News to local newspapers, and 40,000 copies of the booklet were out of stock within three months. In 2014, we also produced "10 Articles for Life and Body" for children. In 2014, we published "10 Articles for Life and Body" for children, which was fundraised and 30,000 copies were distributed free of charge. Both booklets are now available at COML.

Efforts to promote the participation of patient-citizens in healthcare

Yoshiko Tsujimoto, founder of COML, said, "From now on, the patient's point of view will be more and more required. In addition, patient participation will increase more and more, including simulated patients and hospital volunteers. In such cases, it will be necessary to participate deeply based on an understanding of medical care. The course consists of five three-hour sessions, with the aim of informing the general public about the kinds of activities that are available for them to participate in healthcare, and to help them learn the basics of healthcare and become wiser themselves. When the program was first announced in the newspaper, all the spaces were filled by the morning of the day the announcement was made, so the number was hastily increased and 120 people participated in the first session alone. A total of more than 350 people have attended all five sessions so far, and more than 400 people have attended if one-shot sessions are included. As the organizer, I was very surprised to learn that there were so many people who were potentially interested in medical care. When we asked the participants about their motivations, they responded, "I want to do something related to medicine, I want to give back to those who have helped me, and I want to learn more about medicine even though I have never been a patient....
I feel that increasing the number of people with these feelings will lead to an increase in the number of calm patients with whom we can collaborate. I think it is important that as people's awareness of medical care changes, medical care, which used to be a personal issue, becomes aware of it as an issue that includes a social perspective, and that more patients are able to take action with a social perspective in mind.

The concept of training and banking of patient/citizen committee members

Increasingly, the attendance of external committee members from the general public is being requested at prefectural councils, national organizations such as the Ministry of Health, Labor and Welfare and the Ministry of Education, Culture, Sports, Science and Technology, as well as at ethics review committees for clinical trials and clinical research. I am currently attending more than 80 committee meetings in response to requests from various organizations to serve as a committee member. I believe it is important for more members of the public to voice their opinions in the future, and I thought it necessary to train committee members who can voice their opinions.
In FY2016, COML conducted a trial "Ethics Review Committee Member Training Course" in collaboration with Professor Kaori Muto of the Institute of Medical Science, University of Tokyo, and in FY2017 COML has been conducting its own "Training Course for General Committee Members of Medical-Related Conferences" since FY2017. The course consists of 7 sessions of 3 hours each, including debate training to enable participants to speak at meetings, a debriefing session on the Ministry of Health, Labor and Welfare's review meetings, etc., followed by 2 sessions of listening and review meetings. These hearings are conducted with the cooperation of medical professionals and medical-related organizations as expert committee members and the MHLW as secretariat. After the implementation, the external committee members and COML grade the students, and those who pass the course are registered in the bank of committee members. starting in December 2017, the second half of the 2017 fiscal year is scheduled to be held.

To become an organization that enhances patient power

I believe that the patient side has not proactively thought about medical issues surrounding patients until now. We thought that issues such as medical safety measures and the crisis of emergency medical care were something for medical professionals and the government to think about.
However, things are different now. Not only the government and medical personnel, but also residents and patients are expected to know and understand the current status of medical care in their communities. The trend has changed from a time when the medical profession used to have all the initiative, to a time when patients and medical professionals must now work together. And now people are saying that the user's point of view, which has been overlooked until now, is still important. However, even if you are asked to participate because the user's point of view is important, you will be told that simply sharing your personal experience or making random suggestions is meaningless. If this is the case, then people who can express their opinions calmly and objectively are in demand. In other words, the need for patient-citizens who understand medicine better than ever before and who can participate and collaborate deeply in medicine is now being questioned.
When considering how to enhance patient power, I am sure that patient groups are familiar with specific diseases, but I think it is important for them to broaden their perspectives and understand the healthcare system and its structure. I have spent the past 27 years confronting the uncertainties and limitations of medicine above all else. As a result, I no longer have excessive expectations of medical care. But I have not given up. I think it is important to know the reality of medicine in order to face it calmly. And I think it will be a great help if we maintain a cooperative attitude and, for example, start a loose cooperation of patient associations soon if the purpose is not about diseases within the circle of people in various patient associations. Communication skills are required in everything we do, and communication skills are also required when attending and speaking at meetings. I believe that improving the communication skills of individual patient groups will help to raise the awareness of the members. I hope that today's lecture will provide some hints for improving the patient power of patient associations.

Lecture 2: The Role of Patient Organizations in Representing Patients' Voices

The beginning of Japan's measures against intractable diseases

In 1972, the "Outline of Measures for Intractable Diseases" was formulated, which started with three pillars: promotion of research and investigation, development of medical institutions, and reduction of out-of-pocket medical expenses, In 2003, consultation support centers for intractable diseases were established in each prefecture so that consultation could be provided closer to patients. Some support centers are operated by patient groups, while others are operated by medical institutions. Peer support is a priority at the support centers.

Challenges faced by patients with intractable diseases and new measures against intractable diseases - Toward the passage of the Intractable Diseases Act

Patients with intractable diseases face many challenges, such as the lack of specialist doctors, long-term suffering from severe symptoms, high medical costs, and lack of understanding by others due to the rarity of the disease.
In 2001, the Committee on Intractable Diseases was established in the Subcommittee on Disease Control of the Health Science Council. At the 9th meeting of the Committee for Measures to Deal with Intractable Diseases held in July 2009, Tateo Ito, former president of JPA, presented a paper entitled "Proposal for New Measures to Deal with Intractable Diseases and Specified Diseases". Proposals for New Measures against Intractable Diseases and Specific Diseases" at the 9th Committee on Intractable Disease Control held in July 2009.
At the December 2011 meeting of the Committee on Intractable Disease Control, a landmark presentation was made on the interim organization of future measures to combat intractable diseases. The announcement stated that "not a few rare and intractable diseases are caused in part by mutations at the genetic level, and it is inevitable that a certain percentage of these diseases occur in the diversity of the human population. In other words, it was recognized that every citizen has the potential to develop an intractable disease, and it was decided that the basic recognition of measures against intractable diseases is that Japan, as a mature society, needs to encompass and support them.
In 2012, with an eye toward legislation, in January 2013, the 29th Meeting of the Intractable Disease Control At the 29th meeting of the Committee for Measures to Prevent Intractable Diseases in January 2013, it was decided that the basic principles of measures to prevent intractable diseases are to promote research on the treatment of intractable diseases, aiming to conquer diseases, and to realize a symbiotic society where people can live with dignity in the community even if they suffer from intractable diseases.
Based on these decisions, in February 2014, the Cabinet approved the "Draft Law Concerning Medical Care for Patients with Intractable Diseases" and the "Draft Law to Partially Amend the Child Welfare Law," and submitted them to the Diet. Then, from April to May 2014, the bills were enacted on May 23, 2014, after I had an opportunity to speak my opinion as a witness in the Diet.
The law went into effect in January 2015, and initially 110 diseases were covered by the medical expense subsidy, but by July 2015, 306 diseases were covered, and by April 2017, 330 In July 2015, 306 diseases were covered, and in April 2017, 330 diseases were covered.

The Role and Activities of Patients' Associations

We believe that patient associations have three major roles

Patient support projects commissioned and implemented by JPA

In order to speak out in various forums as a patient organization, the organization must be well run in order to speak out. The Ministry of Health, Labor and Welfare (MHLW) is implementing the Patient Support Program for Intractable Diseases to enhance support measures for patients with intractable diseases. For this reason, JPA is entrusted with its operation. As part of the Patient Consultation Support Project, a leader training session is held as part of the training for officers of patient groups, where participants learn basic content from the establishment to the operation of patient groups. In addition, JPA also conducts follow-up training for leaders.

Guidelines for Research Cooperation and Collaboration" compiled by the JPA research group

In 2014, JPA conducted a questionnaire survey of patient groups and researchers conducting research on intractable diseases with the aim of deepening understanding between researchers and patient groups and building a better cooperative relationship when patient groups are involved in research on intractable diseases. The following are excerpts from the survey.

The JPA has developed the Guidelines for Research Collaboration and Cooperation, which now includes topics related to conflicts of interest and ethics and is published in its third edition. We hope you will read them, as they will be useful when dealing with pharmaceutical companies and government agencies, etc. The information is also available on the JPA website.

For patients with intractable diseases to live in the community

We patients with intractable diseases are not special people. We are people living in the community. Ideally, all patients and their families should be able to receive treatment from specialists in the familiar places where they live.
Improving the quality of life leads to fostering hope for life. Patients' associations need to work to realize such a goal.

To make use of the viewpoints of patients and family members involved

Through daily consultations, exchanges, and surveys, we will grasp the problems faced by patients with intractable diseases and consolidate them so that they can be introduced as the opinions of many patient groups.
In order to receive better medical care, we believe it is necessary to improve the environment in which patients can receive medical care with peace of mind. I think it is necessary for us, the patient associations, to work to ensure that measures for intractable diseases and disabilities provide concrete support that incorporates the perspectives of patients, and that the efforts do not end with the enactment of a law.
I believe it is important to constantly improve our knowledge and awareness in order to be a reliable patient association.
The number of members of the Patients Association is decreasing, and I know that there is a problem of financial resources, but instead of lamenting the current situation, I believe that if we do not give up on continuing to communicate, what is needed will continue. I would like to work with all of you in solidarity.
I look forward to working with you.

Q&A session by Mr. Yamaguchi and Mr. Mori

During the Q&A session, many questions were asked at both the Osaka and Tokyo venues.
Based on a form filled out in advance by the audience, Chikako Kijima, Chairperson of the Pharmaceutical Cooperative Association Patient Group Collaboration Promotion Committee, acted as facilitator, and Mr. Yamaguchi and Mr. Mori answered the questions respectively.

Mr. Mori and Mr. Yamaguchi (right) answering questions from the audience and facilitator Chairperson Kijima (left)

In response to the question, "How do you take care of the mental health of the counselors?" Ms. Yamaguchi replied, "After volunteer staff members listen to serious consultations, we ask other members to listen to what they have to say (vent their feelings). If there is a serious question about a telephone consultation, Mr. Yamaguchi himself responds directly from outside the office, etc., so as not to overburden the counselor as much as possible. In response to the same question, Mr. Mori responded, "I think it is necessary to understand that intractable diseases are not easily solved and that peer support has its limitations. When listening to the symptoms, etc., the consultant may get involved and similar symptoms may appear. I think it is necessary to make calm judgments and provide consultation with a certain distance. The activities of the patients' association are to put themselves in the other person's shoes and listen to what they have to say while comparing it to their own experiences, so I try to receive consultations while utilizing the group's views. I think it is necessary for me to have people I can consult with myself.
In response to a question about how to appropriately express one's symptoms to medical professionals and others around them, Yamaguchi replied, "For adults, it is necessary to enrich one's vocabulary and tell it as it is. For children, for example, if they are in pain, it is necessary to teach them to tell specifically how it hurts. He also advised that it would be a good idea to record the conversation in the middle of the talk by preparing a memo at the dialogue with the medical staff.
In response to the question, "What should we do when submitting a request to the MHLW?", Mr. Mori replied, "The destination differs depending on the content, so if it is an intractable disease, I think it would be through the Intractable Disease Control Division. JPA could serve as a contact point and work together with the MHLW on the submission of a request.
In addition, many questions were asked from the audience, and the two speakers gave detailed answers from their own perspectives.

Summary

In addition to these informative presentations, lectures, and Q&A sessions, the meeting ended on a high note with an explanation of the "Consensus Framework for Ethical Collaboration among Patient Groups, Health Care Professionals, and the Pharmaceutical Industry" by Executive Director Tokuo Tanaka, as an informative presentation from the Pharmaceutical Manufacturers Association of Japan.

Yasuhiro Marumoto, Patient Organization Collaboration Promotion Committee

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