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.
Goodman et al. (Thu,) studied this question.