The knowledge base (Campaign stage 1) supports the humanitarian, economic and political arguments for change (Campaign stage 2). It must be adequately representative of all regions before stage 1 is complete.

Headache maps of the world

To build knowledge of the world burden of headache, Lifting The Burden has collated all existing incidence and prevalence data, adding to those on migraine already assimilated into the World Health Report 2001 [reference 1] and producing headache maps of the world.

People contributing to these activities

The headache maps highlight the areas of deficient knowledge. To fill these entails moving onto national or locality fronts with new epidemiological studies. The priorities, reflecting opportunity as well as need, are (or have been):

Africa: Senegal and/or Cameroon, Ethiopia, Uganda, Zambia;
Americas: Mexico, Guatemala, Brazil, Colombia;
Eastern Mediterranean: Pakistan, Saudi Arabia, Abu Dhabi, Morocco;
Europe: Georgia, Russia;
South-East Asia: India, Indonesia;
Western Pacific: China, South Korea.

Studies have been completed in Georgia, Russia, India and China and are underway in Ethiopia, Zambia, Pakistan and Saudi Arabia.

People contributing to these activities

Burden database

A new database, set up at the Norwegian University of Science and Technology, Trondheim, will capture individual respondent data (ie, primary data) from all new studies, with a sub-dataset describing sampling and other methodology as attributes of main datasets. It will be made freely available, but for academic purposes only.

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Methodology of burden-measurement

The methodology of published burden-measurement studies is variable. It needs to be optimized and standardized, especially for application in developing countries with relatively inaccessible populations. With the objectives of improving the quality of scientific endeavour in this field, and benefiting people affected by headache disorders, Lifting The Burden in collaboration with the International Headache Society, World Headache Alliance and the Norwegian University of Science and Technology, Trondheim, is setting up an international Task Force. This group will consult widely to develop theoretical principles and practical guidelines for burden-of-headache studies. In the process it will create a survey instrument and set out study quality criteria.

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Global Burden of Disease Study

A new Global Burden of Disease Study 2010 (GBD2010) is being undertaken by the Institute for Health Metrics and Evaluation, involving the World Health Organization (WHO), the University of Queensland and the Johns Hopkins and Harvard Universities.

Like the Global Burden of Disease Study 2000 (GBD2000), this study will translate prevalence data into quantified burden expressed as years of life lost to disability (YLDs). Disability weights are developed for this purpose. Lifting The Burden has ensured the inclusion in this study not only of migraine (alone considered in GBD2000) but also of tension-type headache and medication-overuse headache. Further, Lifting The Burden has assimilated the worldwide evidence on each of these disorders, and put forward the basis for assigning disability weights to them.

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Atlas of Headache Disorders

Knowledge for action also requires qualitative research, and input from people with headache around the world.

In a direct collaboration with WHO, Lifting The Burden has produced the Atlas of Headache Disorders and Resources in the World 2011 [reference 2]. The Atlas, an addition to WHO's Project Atlas, presents the findings of a global enquiry into headache disorders and health-care resource allocation to headache. It provides the most comprehensive compilation of information on these matters, gathered from 101 countries.

The facts and figures presented within it illuminate the worldwide neglect of a major cause of public ill-health and reveal the inadequacies of responses to it in countries throughout the world. The eventual purpose is to use the information collected through the Atlas to enhance global and national awareness and improve care and services for people with headache disorders. It will assist health planners and policy-makers as well as professionals at every level involved in caring for people with headache disorders. Nongovernmental organizations, wherever they exist, may use the Atlas of Headache Disorders in their advocacy efforts for more and better headache care.

People contributing to these activities

The Eurolight Project

The Eurolight Project is a partnership activity supported by a grant of the EC Public Health Executive Agency and promoted by the Centre of Public Health Research, Luxembourg. Its purpose is to survey the impact of headache throughout Europe, acquiring knowledge in order to inform policy-makers.

International Classification of Functioning, Disease and Health

WHO's International Classification of Functioning, Disease and Health (ICF) is a classification system for disease-related disability endorsed by all WHO Member States in the 54th World Health Assembly, 2001. It takes into account the social aspects of disability and the interactions between disability and environmental factors. It has an important role in describing burden of disease.

There is no question-set that allows headache-related disability to be classified under ICF. Lifting The Burden will repair this gap in collaboration with the Norwegian University of Science and Technology, Trondheim, and the Institute for Health and Rehabilitation Sciences, Ludwig Maximilians University, Munich.

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Work impact studies

Work impact studies will provide evidence that effective treatment of headache actually does get people back to work and recover lost productivity.

Health policy-makers need evidence that provision of effective health care for headache reduces indirect costs, if they are to be persuaded to invest accordingly (Campaign stage 2). Empirical evidence of this is wholly lacking outside the extremely limited context of clinical trials, in which gains from use of specific drugs have been small and unconvincing.

These studies require intervention and outcome studies conducted in co-operation with major employers.

People contributing to these activities

References
1. World Health Organization. The World Health Report 2001. Geneva: WHO, 2001.
2. World Health Organization. Atlas of headache disorders and resources in the world 2011. Geneva: WHO 2011.