Vancouver Declaration II on Global Headache Patient Advocacy 2019. (September 2020)

• Record Type: Journal Article
• Authors: Dodick, David W; Ashina, Messoud; Sakai, Fumihiko; Grisold, Wolfgang; Miyake, Hitoshi; Henscheid-Lorenz, Deborah; Craven, Audrey; Ruiz de la Torre, Elena; Koh, Rachel; Reznik, Nikita; Bance, Lisa; Leroux, Elizabeth; Edvinsson, Lars
• Is Part Of: Cephalalgia. Volume 40:Number 10(2020)
• Page Start: 1017
• Page End: 1025
• Publication Date: 2020-09
• Subjects: Disability-adjusted life years -- Global Patient Advocacy Summit -- European Migraine and Headache Alliance -- quality of life -- years lived with disability; Headache -- Periodicals; 616.8491
• DOI: 10.1177/0333102420921162
• Languages: English
• ISSNs: 0333-1024

Abstract

In 2017, the International Headache Society convened a Global Patient Advocacy Summit (GPAS-1) to begin a collaborative effort involving patients, patient advocates, patient advocacy organizations, healthcare professionals, scientists, professional pain, neurology, and headache societies, pharmaceutical manufacturers, and regulatory agencies to advance issues of importance to patients affected by headache worldwide. In September 2019, the second Global Patient Advocacy Summit (GPAS-2) was convened to revisit issues from the inaugural meeting, assess the progress of the International Headache Society Global Patient Advocacy Coalition (IHS-GPAC) in meeting the goals set forth therein, and discuss strategies for achieving established goals and supporting future development. Short- and long-term mandates from the first Summit were realized, including publishing the Vancouver Declaration on Global Headache Patient Advocacy 2018, determining the governing and operational structures of the IHS-GPAC, and helping to facilitate the first World Federation of Neurology World Brain Day dedicated to migraine. Another short-term mandate, creating a unified advocacy strategy, was fulfilled by the Coalition's decision to focus on encouraging support from employers and implementing employee support programs for people with migraine. To help execute the strategy, the Coalition is developing an employer engagement toolkit that will educate employers and employees about the impact of migraine in the workplace, reduce stigma directed toward employees with migraine, and facilitate the care of employees with migraine to reduce the burden of illness and improve workplace productivity. Coalition members will disseminate the toolkit and encourage the adoption of migraine workplace programs by employers worldwide. The Coalition has established an alliance with two global, multinational employers to expand migraine awareness and support among policy makers and other stakeholders around the world. The IHS-GPAC met many of the goals established at GPAS-1, and it has initiated a global strategy focused on the psychosocial and economic toll of headache disorders, especially migraine, in the workplace. Ongoing and future activities will explore a range of opportunities with employers and across the full spectrum of advocacy goals.