Piloting a minimum data set for older people living in care homes in England: a developmental study (original) (raw)
Gordon, A. L. et al. (2025) Piloting a minimum data set for older people living in care homes in England: a developmental study.Age and Ageing, 54(1), afaf001. (doi: 10.1093/ageing/afaf001) (PMID:39812411) (PMCID:PMC11733825)
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: | Articles |
|---|---|
| Additional 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; East Midlands; North East and North Cumbria; Yorkshire and Humber; and East of England. |
| Keywords: | Care homes, minimum dataset, data linkage, quality of life, digital care record, older people, qualitative research. |
| Status: | Published |
| Refereed: | Yes |
| Glasgow Author(s) Enlighten ID: | Burton, Dr Jenni |
| Authors: | Gordon, A. L., Rand, S., Crellin, E., Allan, S., Tracey, F., De Corte, K., Lloyd, T., Brine, R., Carroll, R. E., Towers, A.-M., Burton, J. K., Akdur, G., Hanratty, B., Webster, L., Palmer, S., Jones, L., Meyer, J., Spilsbury, K., Killett, A., Wolters, A. T., Peryer, G., and Goodman, C. |
| College/School: | College of Medical Veterinary and Life Sciences > School of Cardiovascular & Metabolic Health |
| Journal Name: | Age and Ageing |
| Publisher: | Oxford University Press |
| ISSN: | 0002-0729 |
| ISSN (Online): | 1468-2834 |
| Copyright Holders: | Copyright © The Author(s) 2025 |
| First Published: | First published in Age and Ageing 54(1):afaf001 |
| Publisher Policy: | Reproduced under a Creative Commons licence |
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Funder and Project Information
Developing research resouces and minimum data set for Care Homes' Adoption and use
Jennifer Burton
DACHA Study C005195
SHW - Robertson Centre for Biostatistics
Deposit and Record Details
| ID Code: | 342915 |
|---|---|
| Depositing User: | Miss Kathryn Hazlewood |
| Datestamp: | 05 Dec 2024 11:39 |
| Last Modified: | 08 May 2025 10:37 |
| Date of acceptance: | 3 December 2024 |
| Date of first online publication: | 15 January 2025 |
| Date Deposited: | 5 December 2024 |
| Data Availability Statement: | Yes |