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

Adam Gordon, Stacey Rand, Elizabeth Crellin, Stephen Allan, Freya Tracey, Kat de Corte, Therese Lloyd, Richard Brine, Rachael Carroll, Ann-Marie Towers, Jennifer Burton, Gizdem Akdur, Barbara Hanratty, Lucy Anne Webster, Sinead Rider, Liz Jones, Julienne Meyer, Karen Spilsbury, Anne Killett, Arne WoltersGuy Peryer, Claire Goodman

Research output: Contribution to journalArticlepeer-review

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.
Original languageEnglish
Number of pages26
JournalAge and Ageing
Publication statusAccepted/In press - 3 Dec 2024

Keywords

  • Care homes; minimum dataset; data linkage; quality of life; digital care record

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