TY - JOUR TI - Understanding disability from a secondary data lens perspective: Evidence from consultations with members of the public with disabilities in the UK Y1 - 2025/02/21/ AV - public VL - 20 N1 - This work is licensed under a Creative Commons License. The images or other third-party material in this article are included in the Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ IS - 2 ID - discovery10205563 N2 - Disability is a multifaceted phenomenon, which complicates data collection about people with disabilities in surveys and censuses. A central issue is that the multiple underlying theoretical models about disability are seldomly made explicit yet strongly determine how data are collected and analysed by governments and organisations. It is crucial that such models together with other information about disability and its measurement are accessible and understood by everyone. This study comprised several UK survey searches for disability or disability-related questions and a series of consultations with members of the public with lived experience of disability to understand their perceptions of theoretical models of disability in survey questions. 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. UR - https://doi.org/10.1371/journal.pone.0318409 PB - Public Library of Science (PLoS) JF - PLOS One KW - Humans KW - Persons with Disabilities KW - United Kingdom KW - Surveys and Questionnaires KW - Models KW - Theoretical KW - Data Collection A1 - Saloniki, Eirini-Christina A1 - Lammons, William A1 - Markham, Sarah ER -