Inclusive Data Principle 5: Concepts

About Principle 5: Ensure appropriateness and clarity over the concepts being measured across all data collected.

There are 36 commitments under Principle 5. Figure 6 shows the distribution of the commitments by their RAG status. Most commitments (89%) are green (53%) or complete (37%). Below we describe a project by the Welsh Government which aims to investigate the potential to collect evidence using a Social Model of Disability.

Figure 6: RAG status of all 36 IDTF commitments under Inclusive Data Principle 5

Case study: Collecting data in line with the Social Model of Disability, Welsh Government

The Welsh Government adopted the Social Model of Disability in 2022. The Social Model was developed by disabled people and is enshrined in the UN Convention on the Rights of Disabled People (UNCRDP), to which the UK is a signatory. It distinguishes between ‘impairment’ and ‘disability’ and recognises that people with impairments are disabled by barriers which commonly exist within society. This could include negative attitudes, institutional barriers such as a lack of reasonable adjustment policy, communication barriers such as inaccessible language, and environmental barriers such as a failure to provide appropriate building access for wheelchair users.

In 2022, the Welsh Government’s Minister for Social Justice reaffirmed the commitment to embedding the Social Model and the Welsh Government’s Equality, Race and Disability Evidence Units were established. The Evidence Units are committed to investigating ways of developing evidence in line with the Social Model of Disability. As such, initial investigations into how to co-produce research and work alongside disabled people incorporated advice from members of the Disability Rights Taskforce thereby ensuring that the lived experience of disabled people is at the heart of this research.

The Evidence Units are designing and testing standardised survey questions that reflect the Social Model of Disability, which could be incorporated into future data collections and social research. Guidance will also be developed which advises on the type of questions to be used and when. The research contract was awarded in February 2024 and is expected to be completed in Autumn 2025. The research itself will be conducted in line with the Social Model of Disability, ensuring it is inclusive and accessible for everyone involved, including stakeholders and participants.

The recommended social model questions will have been cognitively tested by children and adults with different impairments and available in English, Welsh, British Sign Language, and other accessible formats.