eprintid: 226207 rev_number: 19 eprint_status: archive userid: 16852 dir: disk0/00/22/62/07 datestamp: 2020-11-16 10:36:28 lastmod: 2024-10-29 18:01:29 status_changed: 2020-11-16 10:36:28 type: article metadata_visibility: show creators_name: Burton, J.K. creators_name: Goodman, C. creators_name: Guthrie, B. creators_name: Gordon, A.L. creators_name: Hanratty, B. creators_name: Quinn, T.J. creators_orcid: 0000-0002-4752-6988 creators_orcid: 0000-0003-1401-0181 title: Closing the UK care home data gap - methodological challenges and solutions ispublished: pub divisions: 25200000 full_text_status: public keywords: Care home, data linkage, routinely-collected data, social care, minimum dataset, COVID-19. abstract: UK care home residents are invisible in national datasets. The COVID-19 pandemic has exposed data failings that have hindered service development and research for years. Fundamental gaps, in terms of population and service demographics coupled with difficulties identifying the population in routine data are a significant limitation. These challenges are a key factor underpinning the failure to provide timely and responsive policy decisions to support care homes. In this commentary we propose changes that could address this data gap, priorities include: (1) Reliable identification of care home residents and their tenure; (2) Common identifiers to facilitate linkage between data sources from different sectors; (3) Individual-level, anonymised data inclusive of mortality irrespective of where death occurs; (4) Investment in capacity for large-scale, anonymised linked data analysis within social care working in partnership with academics; (5) Recognition of the need for collaborative working to use novel data sources, working to understand their meaning and ensure correct interpretation; (6) Better integration of information governance, enabling safe access for legitimate analyses from all relevant sectors; (7) A core national dataset for care homes developed in collaboration with key stakeholders to support integrated care delivery, service planning, commissioning, policy and research. Our suggestions are immediately actionable with political will and investment. We should seize this opportunity to capitalise on the spotlight the pandemic has thrown on the vulnerable populations living in care homes to invest in data-informed approaches to support care, evidence-based policy making and research. date: 2020-09-28 date_type: published publication: International Journal of Population Data Sciences volume: 5 number: 4 publisher: Swansea University id_number: 10.23889/ijpds.v5i4.1391 refereed: TRUE issn: 2399-4908 official_url: https://doi.org/10.23889/ijpds.v5i4.1391 copyright_holders: Copyright © 2020 The Authors prior: First published in International Journal of Population Data Sciences 5(4): 3 repro: Reproduced under a Creative Commons License uniqueid: glaseprints:2020-226207 issn_online: 2399-4908 article_number: 3 hoa_compliant: 9023 hoa_ref_pan: AB hoa_date_acc: 2020-11-11 hoa_date_pub: 2020-12-15 hoa_date_foa: 2021-01-18 hoa_version_fcd: AM hoa_exclude: FALSE hoa_gold: TRUE oa_research_materials_ack: No rioxx2_license_ref_input_license_ref: http://creativecommons.org/licenses/by/4.0/ rioxx2_license_ref_input_start_date: 2020-12-15 citation: Burton, J.K. , Goodman, C., Guthrie, B., Gordon, A.L., Hanratty, B. and Quinn, T.J. (2020) Closing the UK care home data gap - methodological challenges and solutions. International Journal of Population Data Sciences , 5(4), 3. (doi: 10.23889/ijpds.v5i4.1391 ) document_url: https://eprints.gla.ac.uk/226207/1/226207.pdf