Piloting a minimum data set for older people living in care homes in England: a developmental study

Gordon, Adam, Rand, Stacey, Crellin, Elizabeth, Allan, Stephen, Tracey, Freya, de Corte, Kat, Lloyd, Therese, Brine, Richard, Carroll, Rachael, Towers, Ann-Marie, Burton, Jennifer, Akdur, Gizdem, Hanratty, Barbara, Webster, Lucy Anne, Rider, Sinead, Jones, Liz, Meyer, Julienne, Spilsbury, Karen, Killett, Anne ORCID: https://orcid.org/0000-0003-4080-8365, Wolters, Arne, Peryer, Guy ORCID: https://orcid.org/0000-0003-0425-6911 and Goodman, Claire (2024) Piloting a minimum data set for older people living in care homes in England: a developmental study. Age and Ageing. ISSN 0002-0729 (In Press)

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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 ( 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
Uncontrolled Keywords:	care homes; minimum dataset; data linkage; quality of life; digital care record
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
Depositing User:	LivePure Connector
Date Deposited:	13 Dec 2024 01:39
Last Modified:	13 Dec 2024 01:39
URI:	https://ueaeprints.uea.ac.uk/id/eprint/97985
DOI:	issn:0002-0729

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