The 42nd Public Relations Seminar" was held ～Public Relations Activities from the Perspective of Patients and Their Families
December 20, 2024
The Public Relations Committee of the Pharmaceutical Manufacturers Association of Japan held its 42nd Public Relations Seminar on October 21, 2024 at Congress Square Nihonbashi. The Public Relations Seminar is held to share information on the environment surrounding the pharmaceutical industry and public relations-related topics. The theme of this year's seminar was "Public Relations Activities from the Perspective of Patients and Their Families," and Mr. Shun Emoto, a full-time researcher at ASrid, a non-profit organization (NPO), was asked to give a presentation.
Lecture Scene
Dr. Emoto specializes in evaluation and analysis of Patient Reported Outcome (PRO) and through his work with ASrid, he has a wealth of insight into the changing trends and recent examples of public relations activities from a patient perspective. In this lecture, he provided such insights that will be useful to participants in their daily PR activities and projects. In addition to PR committee members of the Pharmaceutical Manufacturers Association of Japan (PMAJ), PR representatives from member companies also attended the lecture online, bringing the total number of participants to 84 (23 at the venue and 61 via the web). In the post-attendance questionnaire, many participants commented on the importance of the theme and the significance of the opportunity to be exposed to it, such as "I learned a lot of things I didn't know," "This is a topic I don't get to hear about often," "I gained a deeper understanding of this world," and "I learned points to keep in mind and areas for improvement from the patients' viewpoint. Many of them were impressed by the importance of the theme as well as the significance of the opportunity to be exposed to it.
The following is a transcript of the seminar.
Public relations activities from the viewpoint of patients and their families
Mr. Shun Emoto, Full-time Researcher, NPO ASrid
Introduction
ASrid, a non-profit organization to which I belong, serves as the Japan organizing office for Rare Disease Day (World Rare and Intractable Disease Day) and held its 15th anniversary event at this venue in February of this year. This event was a great opportunity for us to showcase our corporate exhibition booths, disease awareness panels, and publicity materials. I have been involved in the management of PROs and patient groups, as well as research and practice of Patient & Public Involvement (PPI) at the university. I would also like to speak from a patient perspective as a former patient with a chronic pediatric disease.
Introduction of ASrid
ASrid is a non-profit organization that coordinates interests and conducts third-party research as an intermediary organization to address issues in the field of rare and intractable diseases that are difficult for patients, families, pharmaceutical companies, medical professionals, and governments to resolve on their own. We work together with patients. We are working to create evidence not only from the perspective of physicians, but also from the perspective of patients themselves, and to make use of their voices. Experts with different backgrounds participate in various activities, such as registry operations for rare diseases and international collaboration secretariat (Fig. 1).
Figure 1. Introduction of his organization (ASrid)
What are rare and intractable diseases and incurable diseases?
Next, I would like to introduce rare diseases. Although the number of patients with rare diseases is very small per disease, all rare diseases together affect approximately 300 million people worldwide, or about 5% of the world's population. According to the U.S. National Institutes of Health (NIH), there are just under 6,000 rare diseases, and about 20-30,000 when subtypes are included. This is a huge public health impact.
Specifically, there are approximately 3,000 diseases that affect less than 1 in 1 million people, and 84.5% of all rare diseases have an incidence of 0.3% or less (Figure 2). This makes it difficult to conduct surveys and develop research, and identifying the department and the primary physician can be a difficult problem for patients.
Because of the small number of patients, specialists, and evidence, drug research and development is not advanced, and the disease tends to be isolated from society. It takes 5-7 years to confirm a diagnosis, less than 5% of rare diseases have a cure, and high treatment costs persist. There are visible and invisible diseases, and my patient, who had cyclic vomiting syndrome, usually looked healthy but suddenly collapsed when an attack occurred.
There are two types of hardship for patients and their families: "difficulty of cure" from a medical point of view and "difficulty of living" such as medical expenses and social isolation.
Figure 2. Most of them are ultra-rare diseases
Information needed by the patient side
Now, let me talk about what kind of information the patient side needs. That is information about the experiences and needs of patients with rare and intractable diseases. In the case of common diseases, such as influenza, the patient's experience and the doctor's knowledge are almost identical. However, in the case of rare and intractable diseases, doctors and researchers have less knowledge and there is a discrepancy with the patient's experience (Figure 3).
Figure 3: Information needed by patients with rare/intractable diseases and intractable diseases
The patient side is seeking information on the difficulties of healing and living with the disease. Regarding the difficulty in healing, they need information on early diagnosis methods, treatment methods, and information on specialists. On the other hand, information on medical costs, reasonable accommodation, available systems, and patients' shared experiences are important for the difficulties in living.
Patients and their families can be very knowledgeable about how to cope with the disease. We believe that this expert knowledge can be used to generate effective evidence and disseminate information through appropriate collaboration.
Cases experienced and implemented by ASrid
I would like to discuss some examples of how ASrid has worked with patients and their families to create and disseminate information. First, I would like to discuss a case study of a medical short-term care facility. At the time when the survey was conducted, the level of daytime activities varied from facility to facility, and while some facilities offered a wide variety of daytime activities, many were limited to medical care only. We investigated the effectiveness of these daytime activities and clarified changes in the QOL of facility users. This helped to expand understanding of the significance and challenges of daytime activities among those involved, and thanks to the efforts of those involved in policy making, the additional support for daytime activities was realized in 2021.
In addition, in cooperation with a pharmaceutical company, we developed and widely disseminated evidence of PRO for a certain disease. Since the number of patients is small, we plan to conduct a survey with the cooperation of specialists and patient associations and present QOL-related information at academic conferences.
Finally, the "STEP" project is designed to consolidate and disseminate information. Information is collected from each stakeholder and posted on the website. Through this initiative, we have been able to deliver information on diseases for which there are no patient associations (Figure 4).
Through these examples, ASrid continues to work with patients and their families to disseminate important information.
Figure 4: STEP, a portal site for information in this field
Status of cooperation between patient groups and other stakeholders
Finally, I will discuss the status of collaboration between patient groups and other stakeholders based on the survey results.
First, let me discuss our involvement with the research group: according to a survey of patient groups that we have conducted since 2012, the number of patient groups cooperating with us is increasing, but there are some dissatisfaction with the fact that we only provide one-way data and little feedback on the results. About 60% of the organizations responded that they are satisfied with the involvement.
As for involvement with companies, according to the 2022 survey, 30% of patient groups have cooperated with companies. Although the number of lectures given at companies is increasing, activities related to research and development, etc., are few. Only 30% of the organizations responded that they are satisfied with their involvement. Many respondents hope for continued cooperation and activities with companies (Figure 5).
Patient associations often have weak foundations and need support, but we believe that further social discussion is needed on this point.
Figure 5: Level of satisfaction with the relationship between patient groups and pharmaceutical companies (2022)
Summary
In the area of rare and intractable diseases, the lack of evidence has been reemphasized. Because of this paucity of evidence, the knowledge of medical practitioners and researchers is often misaligned with the experience and actual conditions on the patient side. The patient side is seeking information on the difficulties of healing and living, and it is important to organize and disseminate the experiences, knowledge, and needs of the patient side as common and useful information. We would also like to discuss together how to provide appropriate information regarding the monopoly of information within companies.
(Akira Jono, Director, Public Relations Department)