Vancouver Declaration on Global Headache Patient Advocacy 2018

David William 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

Research output: Contribution to journalArticle

2 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 languageEnglish (US)
JournalCephalalgia
DOIs
StateAccepted/In press - Jan 1 2018

Fingerprint

Patient Advocacy
Headache
Headache Disorders
Patient Preference
Organizations
Delivery of Health Care
Benchmarking
Cost of Illness
Nervous System
Referral and Consultation
Medicine
Guidelines
Health
Therapeutics
Pharmaceutical Preparations

Keywords

  • global headache
  • headache disorders
  • Headache patient advocacy

ASJC Scopus subject areas

  • Clinical Neurology

Cite this

Dodick, D. W., Edvinsson, L., Makino, T., Grisold, W., Sakai, F., Jensen, R., ... Ashina, M. (Accepted/In press). Vancouver Declaration on Global Headache Patient Advocacy 2018. Cephalalgia. https://doi.org/10.1177/0333102418781644

Vancouver Declaration on Global Headache Patient Advocacy 2018. / Dodick, David William; Edvinsson, Lars; Makino, Tomohiko; Grisold, Wolfgang; Sakai, Fumihiko; Jensen, Rigmor; Balch, Alan; Ruiz de la Torre, Elena; Henscheid-Lorenz, Deborah; Craven, Audrey; Ashina, Messoud.

In: Cephalalgia, 01.01.2018.

Research output: Contribution to journalArticle

Dodick, DW, Edvinsson, L, Makino, T, Grisold, W, Sakai, F, Jensen, R, Balch, A, Ruiz de la Torre, E, Henscheid-Lorenz, D, Craven, A & Ashina, M 2018, 'Vancouver Declaration on Global Headache Patient Advocacy 2018', Cephalalgia. https://doi.org/10.1177/0333102418781644
Dodick, David William ; Edvinsson, Lars ; Makino, Tomohiko ; Grisold, Wolfgang ; Sakai, Fumihiko ; Jensen, Rigmor ; Balch, Alan ; Ruiz de la Torre, Elena ; Henscheid-Lorenz, Deborah ; Craven, Audrey ; Ashina, Messoud. / Vancouver Declaration on Global Headache Patient Advocacy 2018. In: Cephalalgia. 2018.
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