Summary

There is a scarcity of high quality, internationally comparable disability data, despite its importance in policy and planning for health and social care, monitoring human rights abuses, and ensuring equalisation of opportunity for people with disabilities.

The following things are required to provide the quality and comparability of data that is needed:

• A clear conceptual framework: Disability means different things to different people, and the widely used definitions have changed over time. In order to collect high quality data on disability, it is important to know what exactly is meant by disability. The ICF outlines a concept of disability that covers multiple domains, including impairments, activity limitations and participation restrictions, and recognises that disability is not inherent in impairment but rather is created in relationship with the environment.
• A clear purpose for the study: To collect appropriate data it is necessary to have a clear purpose for the study. This will shape the measurement tool that is used. For example, if the primary aim is to produce data to inform primary prevention programmes it will be necessary to collect data on impairments and their etiology.
• A high quality measurement tool: To collect high quality data on disability, it is necessary to have a measurement tool that is both reliable and valid, and preferably applicable across different cultures. Tools have been developed to measure impairments and health conditions, difficulties in functioning, activity limitations and participation restrictions. The most appropriate tool to use will be determined by the purpose of the study.