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ToolsGordon, Adam L., Rand, Stacey, Crellin, Elizabeth, Allan, Stephen, Tracey, Freya, de Corte, Kaat, Lloyd, Therese, Brine, Richard, Carroll, Rachael E., Towers, Ann-Marie, Burton, Jennifer Kirsty, Akdur, Gizdem, Hanratty, Barbara, Webster, Lucy, Palmer, Sinaed, Jones, Liz, Meyer, Julienne, Spilsbury, Karen, Killett, Anne, Wolters, Arne T., Peryer, Guy and Goodman, Claire (2025) Piloting a minimum data set for older people living in care homes in England: A developmental study. Age and Ageing, 54 (1). ISSN 0002-0729
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Abstract
Background: We developed a prototype minimum data set (MDS) for English care homes, assessing feasibility of extracting data directly from digital care records (DCRs) with linkage to health and social care data. Methods: Through stakeholder development workshops, literature reviews, surveys and public consultation, we developed an aspirational MDS. We identified ways to extract this from existing sources, including DCRs and routine health and social care datasets. To address gaps, we added validated measures of delirium, cognitive impairment, functional independence and quality of life to DCR software. Following routine health and social care data linkage to DCRs, we compared variables recorded across multiple data sources, using a hierarchical approach to reduce missingness where appropriate. We reported proportions of missingness, mean and standard deviation (SD) or frequencies (%) for all variables. Results: We recruited 996 residents from 45 care homes in three English Integrated Care Systems. 727 residents had data included in the MDS. Additional data were well completed (<35% missingness at wave 1). Competition for staff time, staff attrition and software-related implementation issues contributed to missing DCR data. Following data linkage and combining variables where appropriate, missingness was reduced (≤4% where applicable). Discussion: Integration of health and social care is predicated on access to data and interoperability. Despite governance challenges we safely linked care home DCRs to statutory health and social care datasets to create a viable prototype MDS for English care homes. We identified issues around data quality, governance, data plurality and data completion essential to MDS implementation going forward.
| Item Type: | Article |
|---|---|
| Additional Information: | Data Availability Statement: Anonymised data (digital care records and some associated variables) will be available on request from the corresponding author following a 24-month embargo from the date of publication. Funding information: This project is funded by the NIHR Health Service Research and Delivery Programme (HS&DR NIHR127234) and supported by the NIHR Applied Research Collaboration East of England. Several authors are supported by the NIHR Applied Research Collaborations in Kent, Surrey and Sussex (AMT); East Midlands (ALG); North East and North Cumbria (BH, AW); Yorkshire and Humber (KS); and East of England (GP, AK and CG). AG, KS and CG are NIHR Senior Investigators. The views expressed in this publication are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care. |
| Uncontrolled Keywords: | care homes,minimum dataset,data linkage,quality of life,digital care record,older people,qualitative research,care homes,geriatrics and gerontology,ageing ,/dk/atira/pure/subjectarea/asjc/2700/2717 |
| Faculty \ School: | Faculty of Medicine and Health Sciences > School of Health Sciences Faculty of Medicine and Health Sciences > Norwich Medical School |
| UEA Research Groups: | Faculty of Medicine and Health Sciences > Research Centres > Lifespan Health Faculty of Medicine and Health Sciences > Research Groups > Dementia & Complexity in Later Life Faculty of Medicine and Health Sciences > Research Centres > Institute for Volunteering Research |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 13 Dec 2024 01:39 |
| Last Modified: | 06 Feb 2025 12:29 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/97985 |
| DOI: | 10.1093/ageing/afaf001 |
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