eprintid: 10205563 rev_number: 9 eprint_status: archive userid: 699 dir: disk0/10/20/55/63 datestamp: 2025-03-04 14:13:32 lastmod: 2025-03-04 14:13:32 status_changed: 2025-03-04 14:13:32 type: article metadata_visibility: show sword_depositor: 699 creators_name: Saloniki, Eirini-Christina creators_name: Lammons, William creators_name: Markham, Sarah title: Understanding disability from a secondary data lens perspective: Evidence from consultations with members of the public with disabilities in the UK ispublished: pub divisions: UCL divisions: B02 keywords: Humans, Persons with Disabilities, United Kingdom, Surveys and Questionnaires, Models, Theoretical, Data Collection note: 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/ abstract: 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. date: 2025-02-21 date_type: published publisher: Public Library of Science (PLoS) official_url: https://doi.org/10.1371/journal.pone.0318409 oa_status: green full_text_type: pub language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 2364788 doi: 10.1371/journal.pone.0318409 medium: Electronic-eCollection pii: PONE-D-23-40740 lyricists_name: Saloniki, Eirini-Christina lyricists_id: ESALO16 actors_name: Saloniki, Eirini-Christina actors_id: ESALO16 actors_role: owner full_text_status: public publication: PLOS One volume: 20 number: 2 article_number: e0318409 event_location: United States editors_name: Ajidahun,, Adedayo citation: Saloniki, Eirini-Christina; Lammons, William; Markham, Sarah; (2025) Understanding disability from a secondary data lens perspective: Evidence from consultations with members of the public with disabilities in the UK. PLOS One , 20 (2) , Article e0318409. 10.1371/journal.pone.0318409 <https://doi.org/10.1371/journal.pone.0318409>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10205563/1/Saloniki_journal.pone.0318409.pdf