Committee for Promotion of Cooperation among Patients' Organizations
Interview with Chair Misawa
PPI" is a concept in which patients and citizens participate in the pharmaceutical research and development process. As this concept spreads, collaboration between pharmaceutical companies and patient groups is becoming increasingly important as a key to creating new value. However, there are challenges that must be overcome in order to build this ideal relationship. The "Patient Organization Collaboration Promotion Committee" plays a central role in this process. How can we deepen mutual understanding through dialogue with patient groups and build a true "co-creation" relationship? We interviewed Mr. Kenji Misawa, chairperson of the committee, about the committee's mission, challenges, and future prospects.
Resolving Common Issues through Dialogue and Mutual Understanding with Patient Groups
Promoting Co-Creation with Diverse Stakeholders
Access to clinical trial information" and "preventing PPI from becoming an objective" are important issues
The Patient Organization Collaboration Promotion Committee is deepening mutual understanding through robust dialogue with patient organizations, which are one of the most important stakeholders for pharmaceutical cooperatives and member companies. Our greatest mission is to find common issues and create an environment that can lead to win-win solutions.
At the beginning of fiscal year 2023, we formulated "What We Want to Be at the End of Fiscal Year 2025. Our goal is to achieve a state in which "patient and citizen participation is promoted to realize a better medical environment for patients, and multi-stakeholder groups are able to raise their voices together to resolve common issues. To this end, we are currently working to improve the capability of both patient groups and pharmaceutical companies to deepen mutual understanding and create new opportunities for collaboration over the next three years.
As the committee closest to the patient groups within the Pharmaceutical Manufacturers Association of Japan (PMAJ), we also play a role as a bridge for PPI initiatives being promoted by other committees. We hope to promote mutual understanding and collaboration by informing patient groups of the efforts of the Pharmaceutical Manufacturers' Association and other companies to gain their understanding, and by serving as a point of contact to provide feedback to the Pharmaceutical Manufacturers' Association on the opinions and requests of the patient groups.
One of the issues we see as important is to improve access to clinical trial information. For patients with cancer, rare diseases, or intractable diseases for which there is no cure or current treatment methods are not working well, clinical trials can be a beacon of hope. As patients and their families, there is a growing need for timely information on when clinical trials are being conducted, at which medical institutions, and under what eligibility criteria, and to participate in them.
Currently, it is possible to search for clinical trial information on the clinical research submission and release system (jRCT), but the search function is difficult to use, and the technical terms used make it difficult for patients and their families to understand. In addition, the Council for Regulatory Reform is discussing how to regulate the advertising of clinical trial information, but it continues to be difficult for companies to actively provide information.
In response to these issues, the Committee serves as the secretariat of the "Society for Creating a Society in which Clinical Trials are Accessible to All" (commonly known as the "Creation Society"), which was established by patient groups, medical professionals, and researchers, and is working to improve accessibility by supporting the submission of requests for large-scale improvements to the jRCT. In the future, the "Creation Group" plans to deepen discussions on a system to match patients with clinical trial information.
Another challenge is to quickly achieve a world where the buzzword "PPI" is no longer used. We sometimes receive harsh comments from patient groups that companies tend to be satisfied with just using the term "PPI" or tend to make PPI, which is originally a means to an end. On the other hand, patient groups are also unsure of what PPI is and how to participate in it, and we believe that it is important to create a natural dialogue and mutual understanding without using the term "PPI," and to spread momentum throughout the world to solve common problems in a win-win relationship.
Working to create an environment where multi-stakeholder "co-creation" is possible
In order to realize the "Pharmaceutical Manufacturers Association of Japan Industry Vision 2035," the Committee is developing several important initiatives. The first is to contribute to the creation of opportunities for multi-stakeholder co-creation. In addition to the "Creation Meeting," we also serve as the secretariat for the "Pharmaceutical Visionary Conference," where patient groups, the pharmaceutical industry, government agencies, and medical professionals gather to discuss common issues on a frank and honest basis. Through these forums, we aim to build a system of "co-creation" in which each stakeholder can utilize their areas of expertise to work together to solve problems.
Second, we support the improvement of the capability of both pharmaceutical companies and patient groups. For companies, we have prepared a "PPI Guidebook," "PPI Casebook," "Collection of Near-Misses," and "Points to Keep in Mind When Talking to Patients," and through discussions at monthly committee meetings and advice to other committees, we are improving knowledge and sharing know-how on appropriate ways to collaborate with patient groups. For patient groups, we have held several patient group seminars on the theme of PPI, and this year we plan to create a new collection of case studies to introduce advanced PPI cases and provide the know-how to encourage them to take the first step.
The third is to ensure the transparency of corporate activities and the independence of patient groups. We are promoting the building of relationships of trust with patient groups through sincere actions by making them fully aware of the "Transparency Guidelines for Relationships between Corporate Activities and Patient Groups" and the "Guidelines for Collaboration with Patient Groups.
Our efforts are based on how we can deepen mutual understanding and build a relationship of trust with patient groups, one of our important stakeholders, so that we can work together to address common issues. Co-creation" by patient groups and other multi-stakeholder groups is becoming increasingly important so that patients, and by extension, the public, can enjoy better medical care in the future and live healthier lives. As the Patient Organization Collaboration Promotion Committee, we would like to continue to play a role in promoting such efforts.
The structure and activities of the Patient Organization Collaboration Promotion Committee are posted on the website of the Pharmaceutical Manufacturers Association of Japan (PMAJ). Please visit the website.
[Website of the Committee for the Promotion of Patient Group Collaboration]
Committee for the Promotion of Patient Group Collaboration | Information from the Committee | Japan Pharmaceutical Manufacturers Association, Inc.