Understanding disability – a secondary data lens perspective

Survey data helps shape policy and provision for people living with disabilities. Yet survey questions are underpinned by different definitions or 'models' of disability. It is not always clear which models these questions are based upon nor how they might influence conclusions drawn.

We reviewed the largest UK repository for secondary survey data and identified all disability and disability-related questions from 2010 onwards. We conducted a set of consultations with members of the public who have lived experiences of disability to understand their perceptions of models of disability in survey questions, and how their answers might be shaped by the questions’ framing.

The research illustrates it is possible and fruitful to involve people with lived experience in technical research activities.

Findings also highlighted the need to create a shared database of UK disability research questions to help create a more standard and structured approach and enhance understanding.

The findings highlighted the importance of continued involvement of people with lived experience in technical research activities. They further revealed that members of the public with lived experience can effectively become familiar with theoretical models of disability and how to analyse them in relation to survey questions subject to careful preparation, including practical examples.

University College London (UCL)