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Lessons learned from founding a rare disease patient organization for hereditary angioedema in Japan: moving from a paternalistic to a power-sharing model of the physician-patient relationship

Beverley Anne Yamamoto, Naomi Kitano


Objective: To describe our personal experience of the potential of a rare disease patient organization for fostering patient autonomy and creating a space for the practice of power sharing between physicians and patients.

Methods: Using self-reflection and personal autobiographical experience while drawing on the conceptual framework of patient-centredness, we critically reflect on and formulate lessons from our experiences as a patient/researcher and physician/researcher active in a rare disease patient organization for hereditary angioedema established in Japan in 2013. Results: We identified multiple ways in which patient advocacy meetings shifted the patient-physician relationship to one of sharing power and responsibility. Appearing without his or her symbolic white coat, the physician is transformed into a person. In the context of shared group activities, the patient emerges as a person and one who is increasingly an informed and informing actor.

Conclusion: A dedicated rare disease patient organization has the potential to function as a catalyst for moving from a paternalistic to a power-sharing model of the patient-physician relationship. It can act as a transformative resource for all key actors.

Practice implications: The patient organization potentially reduces formal barriers and allows for the practice of effective patient-physician interactions, even in a cultural setting where paternalism generally shapes relationships. This can build social capital for both patient and physician.


Empowerment, individualised treatment plans, patient advocacy organizations, patient-physician relationship, person-centered healthcare, rare diseases, shared decision-making

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