Developing a minimum data set for older adult care homes in the UK: exploring the concept and defining early core principles

Burton, Jennifer; Wolters, Arne; Towers, Ann‐Marie; Jones, Liz; Meyer, Julienne; Gordon, Adam; Irvine, Lisa; Hanratty, Barbara; Spilsbury, Karen; Peryer, Guy; Rand, Stacey; Akdur, Gizdem; Allan, Stephen; Biswas, Priti; Goodman, Claire

doi:10.1016/s2666-7568(22)00010-1

Cited by 38 publications

(47 citation statements)

References 20 publications

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“…Data should include wider aspects of well-being, always maintaining a person-centred approach [ 30 ]. The ongoing DACHA study [ 6 ], and work on CDEs [ 4 , 5 ], will inform how this could be achieved.…”

Section: Discussionmentioning

confidence: 99%

“…Pre-COVID, international and UK programmes were in progress to develop common data elements (CDEs)—a set of data elements to measure concepts that can be used across studies for data sharing and comparisons—[ 4 , 5 ] and a Minimum Data Set (MDS)—an agreed selection of the elements required to create a comprehensive, standardised assessment of each resident’s functional capabilities and health needs—[ 6 ] for care homes. There are mandated systems for MDS in place in some countries, with financial implications: e.g.…”

Section: Introductionmentioning

confidence: 99%

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Developing a care home data platform in Scotland: a mixed methods study of data routinely collected in care homes

et al. 2022

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Background care homes collect extensive data about their residents, and their care, in multiple ways, for multiple purposes. We aimed to (i) identify what data are routinely collected and (ii) collate care home managers’ views and experiences of collecting, using and sharing data. Methods we examined data collected in six care homes across Lothian, Scotland. We extracted the meta-data, cross-referenced definitions and assessed the degree of harmonisation between care homes and with data sets currently in use in Scotland and internationally. We interviewed care home managers about their views and experiences of collecting, using and sharing data. Results we identified 15 core data items used routinely, with significant heterogeneity in tools and assessments used, and very limited harmonisation. Two overarching themes were identified of importance to the development of a care home data platform: (i) the rationale for collecting data, including to (a) support person-centred care, (b) share information, (c) manage workforce and budget and (d) provide evidence to statutory bodies and (ii) the reality of collecting data, including data accuracy, and understanding data in context. Discussion considerable information is collected by care home staff, in varied formats, with heterogeneity of scope and definition, for range of reasons. We discuss the issues that should be considered to ensure that individual resident-level form the strong foundations for any data platform for care homes, which must also include, robust infrastructure and clear interoperability, with appropriate governance. It must be co-produced by academics, policy makers and sector representatives, with residents, their families and care staff.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Developing a care home data platform in Scotland: a mixed methods study of data routinely collected in care homes

et al. 2022

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“…Although this study was based on a social care data resource, the imbalance is apparent with the bias favouring the availability and breadth of health data sources. There is a need to ensure social care data sources include meaningful measures which capture information important to those using services and this must be planned collaboratively [ 52 ]. While this research has made use of the unique data resource of the SCHC, our findings supports the case for review of its contents to ensure data collection is effective in summarising the complex needs of those living in Scotland’s care homes and better understanding of the services that support them.…”

Section: Discussionmentioning

confidence: 99%

Understanding Pathways into Care homes using Data (UnPiCD study): a retrospective cohort study using national linked health and social care data

et al. 2022

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Background Pathways into care are poorly understood but important life events for individuals and their families. UK policy is to avoid moving-in to care homes from acute hospital settings. This assumes that moves from secondary care represent a system failure. However, those moving to care homes from community and hospital settings may be fundamentally different groups, each requiring differing care approaches. Objective To characterise individuals who move-in to a care home from hospital and compare with those moving-in from the community. Design and setting A retrospective cohort study using cross-sectoral data linkage of care home data. Methods We included adults moving-in to care homes between 1/4/13 and 31/3/16, recorded in the Scottish Care Home Census. Care home data were linked to general and psychiatric hospital admissions, community prescribing and mortality records to ascertain comorbidities, significant diagnoses, hospital resource use, polypharmacy and frailty. Multivariate logistic regression identified predictors of moving-in from hospital compared to from community. Results We included 23,892 individuals moving-in to a care home, 13,564 (56.8%) from hospital and 10,328 (43.2%) from the community. High frailty risk adjusted Odds Ratio (aOR) 5.11 (95% Confidence Interval (CI): 4.60–5.68), hospital discharge with diagnosis of fracture aOR 3.91 (95%CI: 3.41–4.47) or stroke aOR 8.42 (95%CI: 6.90–10.29) were associated with moving-in from hospital. Discharge from in-patient psychiatry was also a highly significant predictor aOR 19.12 (95%CI: 16.26–22.48). Conclusions Individuals moving-in to care homes directly from hospital are clinically distinct from those from the community. Linkage of cross-sectoral data can allow exploration of pathways into care at scale.

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“…This may include the development and implementation of routine minimum data sets to enable capture of the number of younger people living in RAC, their diagnoses and their health and support needs. 43 Capture and reporting of this data would assist with advocacy, policy and service enhancements, to better meet the needs of Open access younger people with neuropsychiatric disorders within community-based care settings.…”

Section: Predictors Of Transfer To Rac On Discharge From Hospitalmentioning

confidence: 99%

Factors associated with discharge from hospital to residential aged care for younger people with neuropsychiatric disorders: an exploratory case–control study in New South Wales, Australia

et al. 2022

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ObjectivesTo examine the sociodemographic and diagnostic factors associated with a discharge from hospital to residential aged care (RAC) for younger people (aged 15–64 years) with neuropsychiatric disorders.DesignAn exploratory case–control study using a historic cohort of people with neuropsychiatric disorders. Cases were people transferred to RAC on hospital discharge during the study period. Controls were people not transferred to RAC on discharge during the study period.SettingPublic and private hospital admissions in New South Wales (NSW), Australia.ParticipantsPeople aged 15–64 years with a neuropsychiatric disorder hospitalised in NSW between July 2002 and June 2015 (n=5 16 469).Outcome measuresThe main outcome was transferred to RAC on discharge from hospital. We calculated ORs for sociodemographic and diagnostic factors to determine factors that may impact discharge to RAC.ResultsDuring the period of data capture, 4406 people were discharged from hospitals to RAC. Discharge to RAC was most strongly associated with diagnoses of progressive neurological and cognitive disorders. Acute precipitants of RAC transfer included a broad range of conditions and injuries (eg, Wernicke’s encephalopathy, stroke, falls) in the context of issues such as older age, not being partnered (married or de facto), living in areas of lower socioeconomic status, functional issues and the need for palliative care.ConclusionsThere are multiple intersecting and interacting pathways culminating in discharge from hospital to RAC among younger people with neuropsychiatric disorders. Improved capacity for interdisciplinary home care and alternative housing and support options for people with high support needs are required.

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Developing a minimum data set for older adult care homes in the UK: exploring the concept and defining early core principles

Cited by 38 publications

References 20 publications

Developing a care home data platform in Scotland: a mixed methods study of data routinely collected in care homes

Developing a care home data platform in Scotland: a mixed methods study of data routinely collected in care homes

Understanding Pathways into Care homes using Data (UnPiCD study): a retrospective cohort study using national linked health and social care data

Factors associated with discharge from hospital to residential aged care for younger people with neuropsychiatric disorders: an exploratory case–control study in New South Wales, Australia

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