Improving disability data: key insights from the final workshop in our series

Poverty is experienced through multiple overlapping factors, and gaps in our understanding of any of those factors can undermine meaningful analysis of the causes of and solutions to poverty. Working with the Centre for Public Data (CfPD), we have been convening a series of workshops and roundtables to explore different dimensions of the issue. Previous workshops have covered wealth, gender and improving data access, among other topics. 

Following on from a previous roundtable identifying gaps in data around disability, our final workshop turned the focus on practical steps for improvements, building on earlier discussions while surfacing new challenges and insights. You can read the full write-up here, or continue below for the key themes and next steps. 

 

Where the challenges lie 

Across the conversation, attendees highlighted three broad sets of challenges: how disability is measured, how inclusive current data collection is, and where critical gaps persist. 

Conceptual and Measurement Issues 

Participants raised persistent tensions between different ways of conceptualising disability, and how these influence survey question design. Inconsistent terminology, differing definitions and variable approaches across datasets make it hard for researchers to combine information or compare groups over time. Many also questioned the reliability of the current standard disability measure, noting it can shift as social inclusion improves, even if underlying impairments do not. This points to the need for a more consistent and accurate way of capturing disability in data. 

Inclusion and methodological barriers 

The workshop underscored the continued difficulty of ensuring disabled people are fully represented in surveys. Accessibility challenges (for example, for BSL users or those with specific linguistic needs) make participation uneven. At the same time, survey agencies face budgetary and workforce constraints that limit specialist data collection, and even representative surveys often struggle to reach sample sizes large enough for detailed subgroup analysis. 

Specific data gaps 

Several important gaps were repeatedly raised, including: 

  • Limited data on the additional costs of disability, which can distort poverty statistics, as well as conceptual challenges that might frustrate progress here 

  • Insufficient insight into the rising prevalence of disability among working-age adults 

  • A lack of up-to-date information on social care access, employer practices, and workplace equality for disabled people. 

 

What improvements could look like 

Participants offered a range of practical and strategic solutions to address these challenges. The room acknowledged that many solutions would need further development to overcome their own limitations, but the prevailing spirit was one of eager collaboration and pragmatism. People recognised that any positive movement in the right direction would be welcome. The best way to achieve that will be consistent inclusion of researchers from civil society and academia in future efforts to improve disability data. 

Strengthening the measurement framework 

Across the board, attendees expressed the need for a more coherent, consistent and harmonised approach to disability measurement. While views varied on the best conceptual model, there was broad agreement that: 

  • Coherence across datasets is highly valued 

  • More detailed and representative data collection is needed 

  • Key producers (ONS, DHSC, DWP) should play a leading role, in partnership with disabled people and the organisations representing them. 

New surveys and expanded data collection 

A dedicated, regular disability survey was discussed at length. In addition to being a vehicle for collecting a large sample from disabled people, potential benefits include richer data on social barriers, functional impairment, costs and labour market experiences. However, participants also recognised the cost and complexity of such an initiative. 

More incremental alternatives were welcomed too, such as: 

  • Expanded or new disability modules in existing government surveys. 

  • Booster samples to improve analysis of disability in a more precise way. 

  • An employer survey capturing employer behaviour on disability equality. 

Improving access and skills 

Many of the issues raised reflected challenges not just in data availability, but in data usability. Echoing some of the discussion from our previous data access workshop, suggestions included: 

  • Affordable, accessible training for charities 

  • Stronger charity–university partnerships 

  • More flexible routes to accessing DWP data 

  • Better linkage between datasets held across government. 

 

Next steps 

Each of our workshops on poverty data gaps has added a key piece to a much larger puzzle. The conversations were designed to be cumulative, with each session connecting to the last and deepening our understanding of the poverty data landscape. Now that the programme is complete, we are synthesising our findings and will shortly publish a set of targeted recommendations for addressing priority data gaps, along with case studies on specific data gaps and their real-world consequences.   

There is still time to contribute to this important work. If you have encountered gaps in disability or poverty data that should be highlighted, please add them to our Poverty Data Gaps Explorer, a growing catalogue designed to help coordinate advocacy for improving UK poverty data. 

You can also contact policy@rss.org.uk or d.langhals@rss.org.uk for more information on the project. 

 

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