Abstract
Abstract
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 NHS and care homes. The lack of data sharing among stakeholders, limits opportunities for coordinated care, service development, and research.
Objectives
1. Identify how to support research, service development, and innovation in care homes.
2. Combine existing evidence with care home-generated resident data to create a minimum data set (MDS) 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 (WPs) supported by Patient and Public Involvement and Engagement with residents, carers, and staff:
• WP1: Conducted two evidence reviews on outcome measures and factors enhancing research productivity in care homes.
• WP2: Created a trial archive for secondary data analysis.
• WP3: Conducted a scoping review, a realist review, and a national survey to define MDS content and assess implementation challenges in English care homes.
• WP4: Linked residents’ data from NHS and social care datasets with data from study care homes, deriving useful MDS variables and assessing data quality.
• WP5: Piloted the MDS at two points in care homes within three Integrated Care Systems, conducted focus groups and interviews with care home and ICS staff.
Three national consultations explored how stakeholders use resident information, measure quality of life, and MDS usefulness. Additionally, sub-projects examined data availability in domiciliary settings, staff reasoning when assessing resident wellbeing 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 six UK RCTs with 5,674 residents across 308 care homes.
• International MDS 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, frontline staff monitoring, and embedded recording systems as important for MDS implementation.
• The pilot study recruited 996 residents from 45 care homes, with 727 residents’ data included in the MDS. Residents’ digital care records were linked to statutory health and social care datasets, creating a viable MDS 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 MDS linking NHS, 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 GP records.
Future Work
Future research should assess whether the care home MDS improves resident outcomes, service delivery, staff experience, cross-sector collaboration, resource use, and digital technology implementation.
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 NHS and care homes. The lack of data sharing among stakeholders, limits opportunities for coordinated care, service development, and research.
Objectives
1. Identify how to support research, service development, and innovation in care homes.
2. Combine existing evidence with care home-generated resident data to create a minimum data set (MDS) 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 (WPs) supported by Patient and Public Involvement and Engagement with residents, carers, and staff:
• WP1: Conducted two evidence reviews on outcome measures and factors enhancing research productivity in care homes.
• WP2: Created a trial archive for secondary data analysis.
• WP3: Conducted a scoping review, a realist review, and a national survey to define MDS content and assess implementation challenges in English care homes.
• WP4: Linked residents’ data from NHS and social care datasets with data from study care homes, deriving useful MDS variables and assessing data quality.
• WP5: Piloted the MDS at two points in care homes within three Integrated Care Systems, conducted focus groups and interviews with care home and ICS staff.
Three national consultations explored how stakeholders use resident information, measure quality of life, and MDS usefulness. Additionally, sub-projects examined data availability in domiciliary settings, staff reasoning when assessing resident wellbeing 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 six UK RCTs with 5,674 residents across 308 care homes.
• International MDS 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, frontline staff monitoring, and embedded recording systems as important for MDS implementation.
• The pilot study recruited 996 residents from 45 care homes, with 727 residents’ data included in the MDS. Residents’ digital care records were linked to statutory health and social care datasets, creating a viable MDS 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 MDS linking NHS, 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 GP records.
Future Work
Future research should assess whether the care home MDS improves resident outcomes, service delivery, staff experience, cross-sector collaboration, resource use, and digital technology implementation.
| Original language | English |
|---|---|
| Journal | Health Services and Delivery Research |
| Publication status | Submitted - 2024 |