Vancouver Declaration on Global Headache Patient Advocacy 2018

David Dodick; Lars Edvinsson; Tomohiko Makino; Wolfgang Grisold; Fumihiko Sakai; Rigmor Jensen; Alan Balch; Elena Ruiz de la Torre; Deborah Henscheid-Lorenz; Audrey Craven; Messoud Ashina

doi:10.1177/0333102418781644

Vancouver Declaration on Global Headache Patient Advocacy 2018

David Dodick^*, Lars Edvinsson, Tomohiko Makino, Wolfgang Grisold, Fumihiko Sakai, Rigmor Jensen, Alan Balch, Elena Ruiz de la Torre, Deborah Henscheid-Lorenz, Audrey Craven, Messoud Ashina

^*Corresponding author for this work

Department of Clinical Medicine

6 Citations (Scopus)

Abstract

Background: Headache disorders comprise the three most prevalent medical disorders globally and contribute almost 20% to the total burden of neurologic illness. Although the experience of a recurrent headache disorder tends to be highly individualized, patient preferences tend to be a low priority in guidelines for the management of patients with headache. Methods: In September 2017, the first Global Patient Advocacy Summit was convened, bringing together patients, patient advocates, patient advocacy organizations, healthcare professionals, pharmaceutical manufacturers, scientists, and regulatory agencies to advance issues of importance to patients affected by headache worldwide. Results: Presentations and discussion covered multiple issues, such as improving access to appropriate medical care; incorporating the insights of independent patient advocates and advocacy organizations; leveraging the insights, experience and influence of leading health and neurological organizations; and raising awareness of the role of regulatory agencies in disease advocacy. Attendees agreed that it is important to understand and promote the global, regional, and local interests of people with headache disorders, as well as challenge the pervasive stigma associated with headache. They also agreed that those with severe, recurrent, or disabling headache disorders should have reliable access to competent medical care; healthcare professionals should have access to adequate training in Headache Medicine; global benchmarks should be established for accurate diagnosis and the use of evidence-based treatments in patients with headache; and that information is needed about consultation, diagnosis, and treatment of headache, particularly in regard to patient preferences. Conclusion: Based on the group’s consensus around these issues, a series of statements was developed, and they are collectively presented herein as the Vancouver Declaration on Global Headache Patient Advocacy 2018.

Original language	English
Journal	Cephalalgia
Volume	38
Issue number	13
Pages (from-to)	1899-1909
Number of pages	11
ISSN	0333-1024
DOIs	https://doi.org/10.1177/0333102418781644
Publication status	Published - 1 Nov 2018

Keywords

global headache
headache disorders
Headache patient advocacy

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title = "Vancouver Declaration on Global Headache Patient Advocacy 2018",

abstract = "Background: Headache disorders comprise the three most prevalent medical disorders globally and contribute almost 20% to the total burden of neurologic illness. Although the experience of a recurrent headache disorder tends to be highly individualized, patient preferences tend to be a low priority in guidelines for the management of patients with headache. Methods: In September 2017, the first Global Patient Advocacy Summit was convened, bringing together patients, patient advocates, patient advocacy organizations, healthcare professionals, pharmaceutical manufacturers, scientists, and regulatory agencies to advance issues of importance to patients affected by headache worldwide. Results: Presentations and discussion covered multiple issues, such as improving access to appropriate medical care; incorporating the insights of independent patient advocates and advocacy organizations; leveraging the insights, experience and influence of leading health and neurological organizations; and raising awareness of the role of regulatory agencies in disease advocacy. Attendees agreed that it is important to understand and promote the global, regional, and local interests of people with headache disorders, as well as challenge the pervasive stigma associated with headache. They also agreed that those with severe, recurrent, or disabling headache disorders should have reliable access to competent medical care; healthcare professionals should have access to adequate training in Headache Medicine; global benchmarks should be established for accurate diagnosis and the use of evidence-based treatments in patients with headache; and that information is needed about consultation, diagnosis, and treatment of headache, particularly in regard to patient preferences. Conclusion: Based on the group{\textquoteright}s consensus around these issues, a series of statements was developed, and they are collectively presented herein as the Vancouver Declaration on Global Headache Patient Advocacy 2018.",

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AU - Jensen, Rigmor

AU - Balch, Alan

AU - Ruiz de la Torre, Elena

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Vancouver Declaration on Global Headache Patient Advocacy 2018

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