Data collection in care homes for older adults: A national survey in England

Hanratty, B. et al. (2023) Data collection in care homes for older adults: A national survey in England. Journal of Long-Term Care, 2023, pp. 288-296. (doi: 10.31389/jltc.199)

Abstract

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 5,000 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. Implications: 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: Articles
• Additional Information: This work is funded by the National Institute for Health and Care Research (NIHR) Health and Social care Delivery Research (HSDR) Programme, grant number NIHR127234. Adam Gordon, Claire Goodman, Anne Killett, Barbara Hanratty and Ann-Marie Towers are part-funded by the NIHR Applied Research Collaborations for East Midlands (ARC-EM), East of England (ARC-EoE), North-East and North Cumbria (ARC-NENC) and Kent, Surrey and Sussex (ARC-KSS), respectively.
• Keywords: aged, nursing homes, data collection, minimum datasets.
• Status: Published
• Refereed: Yes
• Glasgow Author(s) Enlighten ID: Burton, Dr Jenni
• Authors: Hanratty, B., Wolters, A.T., Towers, A.M., Spilsbury, K., Meyer, J., Killett, A., Jones, L., Gordon, A., Burton, J.K., Akdur, G., Irvine, L., Warmoth, K., Liddle, J., and Goodman, C.
• College/School: College of Medical Veterinary and Life Sciences > School of Cardiovascular & Metabolic Health
• Journal Name: Journal of Long-Term Care
• Publisher: International Long Term Care Policy Network
• ISSN: 2516-9122
• ISSN (Online): 2516-9122
• Copyright Holders: Copyright © 2023 The Author(s)
• First Published: First published in Journal of Long-Term Care 2023:288-296
• Publisher Policy: Reproduced in accordance with the publisher copyright policy

Project Code	Award No	Project Name	Principal Investigator	Funder's Name	Funder Ref	Lead Dept
305130		Developing research resouces and minimum data set for Care Homes' Adoption and use	Jennifer Burton	National Institute for Health Research (NIHR)	DACHA Study C005195	SHW - Robertson Centre for Biostatistics