Interactions Between Pharmaceutical Companies and Patient Advocacy Groups in Japan: A Qualitative and Quantitative Interview Study.

Purpose: In Japan, the financial relationship between pharmaceutical companies and patient advocacy groups is considered to be weak; however, limited studies have examined this relationship. The financial relationship and issues surrounding the relationship between the two parties remain unclear. Patients and Methods: This study investigated the relationship between Japanese patient support groups and pharmaceutical companies by interviewing 10 pharmaceutical companies and examining the underlying challenges. Conducted from 2022 to 2023, this research employed a qualitative and quantitative interview survey using a prospective study design. Interview content was transcribed, coded, and categorized. Results: In 70% of the pharmaceutical companies, the most common type of work with patient advocacy groups was listening to the patient's voice, and 90% of the pharmaceutical companies worked to understand patients' needs. Pharmaceutical companies viewed patient advocacy groups as partners in hearing the voices of patients. Regarding the relationship between the two parties, 60% of the pharmaceutical companies believed that the current guidelines were sufficient, despite some problems with the regulations, systems, and the number of group activities. Conclusion: Compared with other countries, groups in Japan are unique in their relationships, size, history, and culture. These results indicate that in Japan, listening to the issues and voices of patients and their families is emphasized rather than financial support. Consequently, there was less concern about compromising the independence of patient advocacy groups, unlike those overseas. Regarding the problems in the relationship between patient advocacy groups and pharmaceutical companies, although the regulations make it difficult for these groups and companies to interact, immediate improvement of the regulations was deemed unnecessary. They prioritize collaboration to listen to the voices of patients. We considered that in Japan, unlike other countries, there is less risk that the independence of patient advocacy groups will be compromised by large amounts of financial support.