Patient Organization Collaboration Promotion Committee The 34th and 35th Patient Organization Seminars

Lecture 1: What Information is Necessary for Patient-Centered Decision Making?

Based on his own experience as a frail child, Mr. Nakayama became aware of the question, "Can't patients do more for their own health? He is currently conducting research at St. Luke's International University Graduate School under the theme of "creating a society where everyone knows their options, understands the benefits and risks of each option, and learns to make decisions based on their own sense of values.

Patients have to make many decisions about their treatment, their lives, and many other aspects of their lives. How should they decide what to base their decisions on? In this lecture, the speaker explained what "patient-centered" means, why it is important for patients to make their own decisions, and introduced information and decision-making support tools to help them make decisions that make sense to them. The following is a summary of his presentation.

St. Luke's International University Graduate School of Nursing
Professor, Department of Nursing Informatics
Kazuhiro Nakayama

What is "patient-centered"?

The international definition of "patient-centered" is to "respect decision-making based on the patient's values" and to provide patients with the necessary information and support for decision-making. In order to make good decisions, it is important to make decisions based on information, rather than relying solely on experience and intuition.

By "information" we mean both "data" and "value. While it is important to properly understand "data," which are numbers usually referred to as scientific evidence (evidence), decisions must be based not only on data but also on one's own sense of value.

In other words, in decision-making,

There are always two or more options,
The seminar was a great success, with participants saying that they had a lot to learn from the seminar,
Then, we make a decision based on what we think is important and on our sense of values.

The process of "making decisions" is important.

It is a blessing for people to be able to "make their own decisions

According to research studies, being able to make one's own decisions is an innate quality of human beings that makes them happy (*1), and international surveys have shown that countries where people say they can decide for themselves what they want and have more freedom of choice in life also have higher levels of happiness. We also know that good health influences happiness, and if this is the case, making one's own decisions about one's health is thought to be even more satisfying. This "ability to make decisions about one's health" is what we call "health literacy.

Unfortunately, Japanese people tend to be less health literate than their Western counterparts (*2), but in recent years, however, an increasing number of people are willing to make their own decisions after consulting with their doctors (*3). On the other hand, there is a high degree of uncertainty in medical care, and it is not always possible to say that this is what will happen if you make such a decision. Even if you know multiple options, it is difficult to decide on one of them, and this has led to a movement to create support tools to help patients make better decisions.

1

Research by Dr. Kazuo Nishimura, Professor at Kobe University
2.

Research by Nakamura et al.
3

Japan Medical Association Research Institute for Policy Studies: The 6th Survey on Attitudes toward Healthcare in Japan

What is the Decision-Making Guide?

This tool was developed to help patients make better decisions. It is designed to help patients understand the advantages and disadvantages of each treatment option, and then they can choose what is important to them and write in the number of Stars based on their own values. The list makes the information visible and makes it easier to choose an option that is consistent with one's values. In Japan, decision-making guides have begun to be created and used in various situations, such as "selection of breast cancer surgery," "gastric banding," and "participation in clinical trials" (Figure 1).

Working together to create a decision-making guide for ourselves Figure 1: Creating a decision-making guide

The use of decision-making guides that are neutrally prepared in accordance with international standards eliminates differences and variations among information providers and methods of communication, making it easier to choose the option that best fits one's sense of values. Of course, no matter which option you choose, your regrets about the outcome may not disappear. However, making a decision after considering all the options leads to a sense of satisfaction, and it is thought to reduce regrets about the decision-making process and why the decision was made the way it was.

Even with this guide, making a decision for the first time about something you have no experience with is still difficult. Therefore, it is important to share your experiences as a patient and to connect with others. Values and perceptions of strengths and weaknesses also differ from person to person. However, above all, we would like to create an environment where patients can make decisions about their health based on their own values, knowing the pros and cons of their available options, so that they can lead a life that they are satisfied with and have few regrets.

Please click here to visit the "Power to Decide Your Health" website run by Mr. Nakayama.

Lecture 2: The role of patient groups in providing information and examples of their innovations

Mr. Nakata founded the MS Cabin, a certified non-profit organization that provides information on multiple sclerosis (MS) and neuromyelitis optica syndrome (NMOSD), two neurological intractable diseases, in 1996, and has been involved in the management of patient support groups utilizing the Internet since early on to deliver necessary information, including overseas information, to patients. Currently, MS Cabin provides information mainly through its website, lectures, information magazines, e-mails, and telephone calls, and this lecture introduced examples and innovations of such information provision activities.

Certified Nonprofit Organization
MS Cabin President
Ms. Goko Nakata

About the Website

1. Provide information with "what kind of information visitors want" in mind

The website is visited not only by patients, but also by their families, the general public, and many other people. Therefore, we try to provide information that meets the needs of our visitors.

For example, for the general public, in addition to an overview of the disease, we include information that we would like them to know, such as "the disease is not contagious," and for children who are researching a family member's disease, we have also created a page for children, with a warning that they should always read it with an adult so that they do not have to face it alone. We also include a note that children should always read the book with an adult so that they do not have to do it alone.

2. Emphasize reliability of information

In order to enhance reliability, we place importance on "freshness of information," "safety," and "independence" as its elements.

Freshness of information: Information posted on the website should be reviewed and maintained on a regular basis.
Security: All pages are SSL-compliant, a communication technology that protects important information from unauthorized access to communication data, etc.
Independence: We clearly state that we do not receive donations from pharmaceutical companies and that we are financially independent of their operations.

In addition, since there is a lot of information on diseases, we also pay attention to creating a friendly atmosphere by including cute illustrations.

Please click here to visit the MS Cabin website.

Lectures

In addition to providing information about the disease, the main purpose of the lectures, which are held about 15 times each year throughout the country, is to let participants know what kind of medical professionals are available in each region. We also make the following efforts

For those who were unable to attend, an abstract is compiled and published in the information magazine described below
Live coverage on Twitter of the atmosphere of the event and content deemed acceptable for public release
After the lecture, a small social gathering will be held to allow participants to ask the speaker about points they did not understand.
Later, we will accept inquiries by phone or e-mail, and provide supplementary information on points that were not understood, or recommend that the audience see the speaker.
Keep an internal record of the lecture so that it can be retrieved at a later date when needed.

Information magazines

The magazine is published four times a year and currently has about 1,400 subscribers. Mr. Nakata writes the manuscript, which is then compiled after proofreading by seven board member physicians. The work of summarizing is difficult because of the sometimes differing opinions and perspectives among the experts, but we believe that this is a way to provide what patients want to know by adding the perspectives of several doctors to those of us as patients. In addition to this, we are also making the following efforts

Provide the information in an A5 size that is easy to carry and open quickly.
Use easy-to-understand expressions with as little jargon as possible.
Avoid using the word "case" when referring to a patient.
Do not use the expression "let's ~", which may seem supercilious, from the viewpoint of providing information from the same patient to the patient.

Providing information by phone or e-mail

Phone calls and e-mails are accepted from subscribers to our information magazine or attendees of our lectures.

Consultations are a treasure trove of information, and we always try to keep a record of them. We keep a record of each consultation, including the name, the nature of the consultation, and the drug name, so that it can be retrieved at a later date using database software. By keeping records in this way, we sometimes notice, for example, that there are many complaints about this treatment, even though we do not know the cause-and-effect relationship, and compare them with adverse event reports on the website of the Pharmaceuticals and Medical Devices Agency (PMDA), or conduct a survey on Twitter to see if anyone has similar symptoms. We sometimes compare them with adverse event reports on the website of the Pharmaceuticals and Medical Devices Agency (PMDA), conduct surveys on Twitter to see if there are others with similar symptoms, or consult with physicians to jointly present at academic conferences. One important function of patient support groups that collect and provide information is to present issues when they notice something, and we hope that this will lead to research and measures by specialists.

Providing information on organizational operations is also important

Another important aspect is to provide information on the organization's operations; MS-CABIN has changed its policy to no longer accept donations from pharmaceutical companies, so stabilizing its operations is an important issue. We ask individuals to support us through various opportunities and media, such as at lectures and in our information magazine, and we are working to make it easier for people to donate by, for example, adopting credit card payment methods. At the same time, we are not only relying on donations, but also making efforts to increase our business income by selling T-shirts, publishing books, and so on. Above all, we are very happy to receive the understanding and support of many people by proactively providing information about the organization's operations.

Information from the Pharmaceutical Cooperative Association: Economic Evaluation of Drugs

Following the two lectures by guest speakers, the Pharmaceutical Manufacturers Association of Japan (PMAJ) provided information on the economic evaluation of pharmaceutical products. In the past, pharmaceuticals were evaluated based on safety and efficacy, but now, with the demand for more efficient healthcare costs, the perspective of economic efficiency is also becoming a necessity. In Japan, cost-effectiveness evaluation of pharmaceuticals has been introduced on a trial basis under the initiative of the Ministry of Health, Labor and Welfare since FY2017. In his presentation, he introduced the basic concept of the cost-effectiveness evaluation method, as well as the final evaluation based on the value calculated in the cost-effectiveness evaluation and the discussion of the value that cannot be evaluated only by that value. In addition, he mentioned that in Japan, patients do not participate in discussions on cost-effectiveness, and concluded by saying that he would like to continue to consider ways for patients to participate appropriately in order to evaluate the value of pharmaceutical products.

Institute for Pharmaceutical Industry Policy Research
Senior Researcher
Ms. Mariko Hirozane

Summary

The Q&A session was also very active, and the reception after the conference provided an opportunity for active exchange of information among the patient groups and with the speakers. The reception after the conference was also a great opportunity for active exchange of information among patient groups and with the speakers.

(Mari Miyagawa, leader of the Patient Organization Seminar TF, Patient Organization Collaboration Promotion Committee)

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