Authors' objectives: 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. 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.

Authors' results and 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.

Authors' 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. The COVID-19 pandemic disrupted relationships and recruitment. Governance challenges prevented linking residents’ data to general practitioner records.

Project Status: Completed

URL for project: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/NIHR135676

Year Published: 2026

URL for published report: https://www.journalslibrary.nihr.ac.uk/hsdr/GJCG8715

URL for additional information: English

English language abstract: An English language summary is available

Publication Type: Full HTA

Country: England, United Kingdom

DOI: 10.3310/PKFR6453

Organisation Name: NIHR Health Services and Delivery Research programme

Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK

Contact Name: journals.library@nihr.ac.uk

Contact Email: journals.library@nihr.ac.uk