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Data collections in care homes for older adults: a national survey in England

Hanratty, Barbara, Wolters, Arne, Towers, Ann-Marie, Spilsbury, Karen, Meyer, Julienne, Killett, Anne, Jones, Liz, Gordon, Adam, Burton, Jennifer Kirsty, Akdur, Gizdem, and others. (2023) Data collections in care homes for older adults: a national survey in England. Journal of Long-Term Care, . pp. 288-296. E-ISSN 2516-9122. (doi:10.31389/jltc.199) (Access to this publication is currently restricted. You may be able to access a copy if URLs are provided) (KAR id:103092)

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Context: In many countries, there is a specification for information that should be collected by care homes. So-called ‘minimum data-sets’ (MDS) are often lengthy, and report on resident health and wellbeing, staff and facilities. In the UK, the absence of any easily accessible data on the care home population was highlighted at the start of the COVID-19 pandemic. Care homes faced multiple requests for data from external agencies who had little knowledge of what care homes were already collecting.

Objective: This study aimed to identify the range (and method) of data collected by care home organisations, in a country without a mandated MDS.

Methods: Online survey of care homes (with/without nursing) in England. Care homes recruited via research and care home networks, social media. Questions covered data content, storage and views on data sharing, analysed with descriptive statistics.

Findings: 273 responses were received, representing over 5000 care homes. Care homes reported extensive data on the health, care and support needs of individual residents, their preferences and activities. Clinical measures and tools adopted from health were commonly used, but few collected information on quality-of-life. Care homes reported uses of these data that included monitoring care quality, medication use, staff training needs, budgeting and marketing. Concerns over privacy and data protection regulations are potential barriers to data sharing.


These findings challenge the notion that incentives or mandates are required to stimulate data collection in care homes. Care home organisations are collecting an extensive range of resident level information for their own uses. Countries considering introducing social care records or an MDS could start by working with care home organisations to review existing data collection and evaluate the implications of collecting and sharing data. A critical approach to the appropriateness of health-related tools in this setting is overdue.

Item Type: Article
DOI/Identification number: 10.31389/jltc.199
Uncontrolled keywords: aged; nursing homes; data collection; minimum datasets
Subjects: H Social Sciences
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Funders: National Institute for Health Research (
Depositing User: Ann-Marie Towers
Date Deposited: 02 Oct 2023 12:42 UTC
Last Modified: 06 Mar 2024 12:28 UTC
Resource URI: (The current URI for this page, for reference purposes)

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