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Lookup NU author(s): Professor Barbara HanrattyORCiD
This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).
Background: In England, care homes are the primary providers of long-term care for older adults. The increasing recognition of the importance of social care underscores the importance of collaboration between the National Health Service and care homes. The lack of data sharing among stakeholders limits opportunities for co-ordinated care, service development and research. Objectives: Identify how to support research, service development and innovation in care homes. Combine existing evidence with care home-generated resident data to create a minimum data set that is relevant and usable for stakeholders, including residents, relatives, practitioners, researchers, regulators and commissioners. Design and methods: The study used a mixed-methods approach, structured into five work packages, supported by patient and public involvement and engagement with residents, carers and staff: Work package 1: Conducted two evidence reviews on outcome measures and factors enhancing research productivity in care homes. Work package 2: Created a trial archive for secondary data analysis. Work package 3: Conducted a scoping review, a realist review and a national survey to define minimum data set content and assess implementation challenges in English care homes. Work package 4: Linked residents' data from National Health Service and social care data sets with data from study care homes, deriving useful minimum data set variables and assessing data quality. Work package 5: Piloted the minimum data set at two points in care homes within three integrated care systems, conducted focus groups and interviews with care home and integrated care system staff. Three national consultations explored how stakeholders use resident information, measure quality of life and minimum data set usefulness. Additionally, subprojects examined data availability in domiciliary settings, staff reasoning when assessing resident well-being and completing research during rapid policy changes. Findings: The reviews revealed significant heterogeneity in outcome measurement and questioned the appropriateness of some methods and measures used for care home research. The Virtual International Care Home Trials Archive merged data from 6 United Kingdom randomised controlled trials with 5674 residents across 308 care homes. International minimum data set studies are a valuable resource for international comparative research. The wide range of measures used are mostly clinical with under-representation of measures important to care homes (e.g. quality of life). A national survey of care homes demonstrated the range of information, including clinical measures being routinely collected. The realist review identified motivation, front-line staff monitoring and embedded recording systems as important for minimum data set implementation. The pilot study recruited 996 residents from 45 care homes, with 727 residents' data included in the minimum data set. Residents' digital care records were linked to statutory health and social care data sets, creating a viable minimum data set prototype with metadata as resource. Conclusions: The study provided an evidence-based critique of care home research and a resource for secondary data analysis for future research. It developed a prototype minimum data set linking National Health Service, social care and care home data, demonstrating its importance as a basis for discussions between health and care staff. Limitations: The COVID-19 pandemic disrupted relationships and recruitment. Governance challenges prevented linking residents' data to general practitioner records. Future work: Future research should assess whether the care home minimum data set improves resident outcomes, service delivery, staff experience, cross-sector collaboration, resource use and digital technology implementation. Funding: This synopsis presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number NIHR127234.The COVID-19 pandemic showed that we lacked basic information about how many people lived in care homes. Information was not collected in the same way or was easily shared between different organisations responsible for residents’ care. The Developing resources And minimum data set for Care Homes’ Adoption study aimed to improve how research is done in care homes and to provide a single source of information (minimum data set) about residents for people working in and with care homes. We completed two evidence reviews about doing research in care homes and combined information about 5600 residents from completed studies to be used in future research. A survey of care homes in England told us what care staff recorded in residents’ notes. A review of how minimum data set were used internationally and their content were used to inform the content of the planned minimum data set and how to support staff to use it. We asked people with different experiences of living, working and visiting care homes about the information they would need from an minimum data set. To create an minimum data set, with information about residents’ health and care, we linked information from digital care home records for 727 residents, with their information held in routine National Health Service and social care data sets. We added additional measures, including ones to capture residents’ quality of life to care home records. We also did exploratory work on developing an minimum data set for people receiving care at home. We showed how important it is to use tools and research methods that truly reflect what it is like to live and work in a care home. Plus, the involvement of care home staff in planning research reduces the risk of study failure. The study minimum data set could reduce duplication and fragmentation of residents’ information supporting better care, and staff were able to complete the additional measures. Further work is needed to improve how information is linked, especially to general practitioner records, how staff receive feedback and help staff to use minimum data set information to make decisions. A future priority is to develop an minimum data set that includes people receiving care at home.
Author(s): Goodman C, Akdur G, Irvine L, Burton JK, Hanratty B, Killett A, Meyer J, Towers A-M, Gordon AL, Carroll R, Rand S, Micklewright K, Spilsbury K, Lloyd T, Crellin L, Allan S, Peryer G, Davey V, Tracey F, de Corte K, Smith N, Day J, Lang I, Jones L
Publication type: Article
Publication status: Published
Journal: Health and Social Care Delivery Research
Year: 2026
Volume: 14
Issue: 3
Pages: 1-43
Print publication date: 01/02/2026
Acceptance date: 31/07/2025
Date deposited: 23/02/2026
ISSN (electronic): 2755-0079
Publisher: NIHR Journals Library
URL: https://doi.org/10.3310/PKFR6453
DOI: 10.3310/PKFR6453
PubMed id: 41665272
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