Local patient-centered headache advocacy with regional and global impact: lessons from the Japanese Patient Advocacy Coalition (JPAC)

TL;DR

The Japanese Patient Advocacy Coalition (JPAC) has successfully raised awareness and reduced stigma around migraine through patient-centered advocacy efforts in Japan.

Contribution

JPAC provides a patient-centered model for headache advocacy with lessons applicable regionally and globally.

Findings

Migraine is underdiagnosed and undertreated in Japan, with only 39.7% of patients seeking care.

JPAC's initiatives have raised awareness, educated stakeholders, and reduced stigma around migraine.

JPAC's model serves as a blueprint for headache advocacy efforts worldwide.

Abstract

Migraine is a leading cause of disability worldwide, particularly among working-age individuals. In Japan, its prevalence is 8.4%; however, migraine remains underdiagnosed and undertreated. Only 39.7% of patients with migraine seek care for it and 9.2% receive preventive care. Migraine stigma is ubiquitous and concealment has become a trait of the disease, highlighting the urgent need for public awareness and patient advocacy. The Japanese Patient Advocacy Coalition (JPAC) was established in 2017 following the inaugural Global Patient Advocacy Summit in Vancouver, which aimed to place patients at the center of advocacy and address their needs worldwide. With the support of the Japanese Headache Society (JHS) and in alignment with the Global Patient Advocacy Coalition (GPAC, now GPACH), JPAC promotes awareness, reduces stigma, and amplifies the voices of patients in Japan. Since its inception, the JPAC has led various initiatives nationwide to raise awareness, provide education, promote advocacy, and break down stigma. To raise awareness and increase understanding, education initiatives have targeted the public, patients, nurses, healthcare professionals, hospital staff, occupational physicians, and workplaces. JPAC has also led to successful international collaboration. Expanding JPAC initiatives to schools, workplaces, and policy settings will be essential for reducing stigma and improving the lives of individuals living with headache disorders. JPAC’s collaborative, patient-centered efforts, anchored by individuals living with headache disorders and supported by the JHS, have significantly advanced awareness and advocacy in Japan. This manuscript reviews eight years of JPAC’s local initiatives and the lessons learned, aiming to serve as a blueprint, source of inspiration, and support for headache advocacy efforts regionally and globally.

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