Closing the UK care home data gap – methodological challenges and solutions

UK care home residents are invisible in national datasets. The COVID-19 pandemic has exposed data failings that have hindered service development and research for years. Fundamental gaps, in terms of population and service demographics coupled with difficulties identifying the population in routine data are a significant limitation. These challenges are a key factor underpinning the failure to provide timely and responsive policy decisions to support care homes. In this commentary we propose changes that could address this data gap, priorities include: (1) Reliable identification of care home residents and their tenure; (2) Common identifiers to facilitate linkage between data sources from different sectors; (3) Individual-level, anonymised data inclusive of mortality irrespective of where death occurs; (4) Investment in capacity for large-scale, anonymised linked data analysis within social care working in partnership with academics; (5) Recognition of the need for collaborative working to use novel data sources, working to understand their meaning and ensure correct interpretation; (6) Better integration of information governance, enabling safe access for legitimate analyses from all relevant sectors; (7) A core national dataset for care homes developed in collaboration with key stakeholders to support integrated care delivery, service planning, commissioning, policy and research. Our suggestions are immediately actionable with political will and investment. We should seize this opportunity to capitalise on the spotlight the pandemic has thrown on the vulnerable populations living in care homes to invest in data-informed approaches to support care, evidence-based policy making and research.

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Care homes, their communities, and resilience in the face of the COVID-19 pandemic: interim findings from a qualitative study

BMC Geriatrics ◽

10.1186/s12877-021-02053-9 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Fiona Marshall ◽

Adam Gordon ◽

John R. F. Gladman ◽

Simon Bishop

Keyword(s):

Central Government ◽

Resource Constraints ◽

Care Delivery ◽

Care Home ◽

Third Sector ◽

Care Homes ◽

Framework Analysis ◽

Local Networks ◽

Care Home Staff ◽

East Midlands

Abstract Background From late February 2020, English care homes rapidly adapted their practices in response to the COVID-19 pandemic. In addition to accommodating new guidelines and policies, staff had to adjust to rapid reconfiguration of services external to the home that they would normally depend upon for support. This study examined the complex interdependencies of support as staff responded to COVID-19. The aim was to inform more effective responses to the ongoing pandemic, and to improve understanding of how to work with care home staff and organisations after the pandemic has passed. Methods Ten managers of registered care homes in the East Midlands of England were interviewed by videoconference or phone about their experiences of the crisis from a structured organisational perspective. Analysis used an adapted organisational framework analysis approach with a focus on social ties and interdependencies between organisations and individuals. Results Three key groups of interdependencies were identified: care processes and practice; resources; and governance. Care home staff had to deliver care in innovative ways, making high stakes decisions in circumstances defined by: fluid ties to organisations outside the care home; multiple, sometimes conflicting, sources of expertise and information; and a sense of deprioritisation by authorities. Organisational responses to the pandemic by central government resulted in resource constraints and additional work, and sometimes impaired the ability of staff and managers to make decisions. Local communities, including businesses, third-sector organisations and individuals, were key in helping care homes overcome challenges. Care homes, rather than competing, were found to work together to provide mutual support. Resilience in the system was a consequence of dedicated and resourceful staff using existing local networks, or forging new ones, to overcome barriers to care. Conclusions This study identified how interdependency between care home organisations, the surrounding community, and key statutory and non-statutory organisations beyond their locality, shaped decision making and care delivery during the pandemic. Recognising these interdependencies, and the expertise shown by care home managers and staff as they navigate them, is key to providing effective healthcare in care homes as the pandemic progresses, and as the sector recovers afterwards.

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National Early Warning Scores And COVID-19 Deaths In Care Homes: An Ecological Time Series Study

Innovation in Aging ◽

10.1093/geroni/igaa057.3517 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 962-963

Author(s):

Daniel Stow ◽

Robert Barker ◽

Fiona Matthews ◽

Barbara Hanratty

Keyword(s):

Time Series ◽

Oxygen Saturation ◽

Respiratory Rate ◽

Early Warning ◽

Disease Surveillance ◽

Care Home ◽

Outcome Data ◽

Care Homes ◽

Individual Level ◽

Early Warning Scores

Abstract Tracking COVID-19 infections in the care home population has been challenging, because of the limited availability of testing and varied disease presentation. We consider whether National Early Warning Scores (NEWS/NEWS2) could contribute to COVID-19 surveillance in care homes. We analysed NEWS measurements from care homes in England (December 2019 to May 2020). We estimated pre-COVID (baseline) levels for NEWS and NEWS components using 80th and 20th centile scores for measurements before March 2020. We used time-series to compare the proportion of above-baseline NEWS to area-matched reports of registered deaths in care home residents from the Office for National Statistics We analysed 29,656 anonymised NEWS from 6,464 people in 480 care home units across 46 local authority areas. From March 23rd to May 20th, there were 5,753 deaths (1,532 involving COVID-19, 4,221 other causes) in corresponding geographical areas. A rise in the proportion of above-baseline NEWS was observed from March 16th 2020. The proportion of above-baseline oxygen saturation, respiratory rate and temperature measurements also increased approximately two weeks before peaks in deaths. We conclude that NEWS could contribute to disease surveillance in care homes during the COVID-19 pandemic. Oxygen saturation, respiratory rate and temperature could be prioritised as they appear to signal rise in mortality almost as well as total NEWS. This study reinforces the need to collate data from care homes, to monitor and protect residents’ health. Further work using individual level outcome data is needed to evaluate the role of NEWS in the early detection of resident illness.

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COVID-19 risk factors amongst 14,786 care home residents: An observational longitudinal analysis including daily community positive test rates of COVID-19, hospital stays, and vaccination status in Wales (UK) between 1st September 2020 and 1st May 2021.

10.1101/2021.09.30.21264338 ◽

2021 ◽

Author(s):

Joe Hollinghurst ◽

Robyn Hollinghurst ◽

Laura North ◽

Amy Mizen ◽

Ashley Akbari ◽

...

Keyword(s):

Risk Factors ◽

Logistic Regression ◽

Hospital Admissions ◽

Care Home ◽

Vaccination Status ◽

Care Homes ◽

Positive Test ◽

Care Providers ◽

Specialist Care ◽

Individual Level

Objectives: Determine individual level risk factors for care home residents testing positive for SARS-CoV-2. Study Design: Longitudinal observational cohort study using individual-level linked data. Setting: Care home residents in Wales (United Kingdom) between 1st September 2020 and 1st May 2021. Participants: 14,786 older care home residents (aged 65+). Our dataset consisted of 2,613,341 individual-level daily observations within 697 care homes. Methods: We estimated odds ratios (ORs [95% confidence interval]) using multilevel logistic regression models. Our outcome of interest was a positive SARS-CoV-2 polymerase chain reaction (PCR) test. We included time dependent covariates for the estimated community positive test rate of COVID-19, hospital admissions, and vaccination status. Additional covariates were included for age, positive PCR tests prior to the study, sex, frailty (using the hospital frailty risk score), and specialist care home services. Results: The multivariable logistic regression model indicated an increase in age (OR 1.01 [1.00,1.01] per year of age), community positive test rate (OR 1.13 [1.12,1.13] per percent increase in positive test rate), hospital inpatients (OR 7.40 [6.54,8.36]), and residents in care homes with non-specialist dementia care (OR 1.42 [1.01,1.99]) had an increased odds of a positive test. Having a positive test prior to the observation period (OR 0.58 [0.49,0.68]) and either one or two doses of a vaccine (0.21 [0.17,0.25] and 0.05 [0.02,0.09] respectively) were associated with a decreased odds of a positive test. Conclusions: Our findings suggest care providers need to stay vigilant despite the vaccination rollout, and extra precautions should be taken when caring for the most vulnerable. Furthermore, minimising potential COVID-19 infection for care home residents admitted to hospital should be prioritised.

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The Digital House of Care: information solutions for integrated care

Journal of Integrated Care ◽

10.1108/jica-08-2016-0029 ◽

2016 ◽

Vol 24 (5/6) ◽

pp. 237-248 ◽

Cited By ~ 1

Author(s):

Andrew Muirhead ◽

Derek George Ward ◽

Brenda Howard

Keyword(s):

Large Scale ◽

Social Care ◽

Care Delivery ◽

Service Planning ◽

Recent Experience ◽

Organisational Development ◽

Digital Tool ◽

Content Type ◽

Health And Social Care ◽

Care Information

Purpose The purpose of this paper is to describe the development of a digital tool in an English county striving towards a vision of integrated information that is used to underpin an increasingly integrated future of health and social care delivery. Design/methodology/approach It discusses the policy context nationally, the origins and implementation of the initiative, the authors’ experiences and viewpoint highlighting key challenges and learning, as well as examples of new work undertaken. Findings In all, 12 health and care organisations have participated in this project. The ability for local commissioners and providers of services to now understand “flow” both between and within services at a granular level is unique. Costs are modest, and the opportunities for refining and better targeting as well as validating services are significant, thus demonstrating a return on investment. Key learning includes how organisational development was equally as important as the implementation of innovative new software, that change management from grass roots to strategic leaders is vital, and that the whole system is greater than the sum of its otherwise in-silo parts. Practical implications Data linkage initiatives, whether local, regional or national in scale, need to be programme managed. A robust governance and accountability framework must be in place to realise the benefits of such as a solution, and IT infrastructure is paramount. Social implications Organisational development, collaborative as well as distributed leadership, and managing a change in culture towards health and care information is critical in order to create a supportive environment that fosters learning across organisational boundaries. Originality/value This paper draws on the recent experience of achieving large-scale data integration across the boundaries of health and social care, to help plan and commission services more effectively. This rich, multi-agency intelligence has already begun to change the way in which the system considers service planning, and learning from this county’s approach may assist others considering similar initiatives.

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Staff training using STAR: a pilot study in UK care homes

International Psychogeriatrics ◽

10.1017/s1041610211002559 ◽

2012 ◽

Vol 24 (6) ◽

pp. 911-920 ◽

Cited By ~ 22

Author(s):

Judith Goyder ◽

Martin Orrell ◽

Jennifer Wenborn ◽

Aimee Spector

Keyword(s):

Pilot Study ◽

Behavioral Problems ◽

Staff Training ◽

Large Scale ◽

Controlled Trial ◽

Care Home ◽

Care Staff ◽

Care Homes ◽

People With Dementia ◽

Star Program

ABSTRACTBackground: Symptoms such as depression, anxiety, and behavioral problems are very common in people with dementia living in care homes. Staff training has been identifed as a promising psychosocial intervention. This pilot study investigated the feasibility of implementing the Staff Training in Assisted Living Residences (STAR) program in UK care homes.Methods: The eight-week STAR program was delivered in two care homes. Twenty-five care staff attended the training. Thirty-two residents, with dementia and clinically significant anxiety, depression, or behavioral problems, were included in the study. Residents and staff were assessed at baseline and eight-week follow-up.Results: Residents demonstrated significantly reduced symptoms of depression and behavioral problems following the implementation of the program, although resident-rated quality of life and anxiety symptoms did not improve significantly. Staff sense of hopefulness towards people with dementia also improved significantly and staff rated themselves as significantly more competent at forming relationships with residents.Conclusion: Delivering the STAR program to care staff can have an impact on the behavioral and psychological symptoms of dementia displayed by care home residents. The program was feasible to implement and was rated highly by care staff. A large-scale randomized controlled trial is now required to evaluate the effectiveness of this training intervention.

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Care homes, their communities, and resilience in the face of the COVID-19 pandemic: interim findings from a qualitative study

10.1101/2020.11.10.20229013 ◽

2020 ◽

Author(s):

Fiona Marshall ◽

Adam L Gordon ◽

John RF Gladman ◽

Simon Bishop

Keyword(s):

Central Government ◽

Resource Constraints ◽

Care Delivery ◽

Care Home ◽

Third Sector ◽

Care Homes ◽

Framework Analysis ◽

Local Networks ◽

Care Home Staff ◽

East Midlands

AbstractBackgroundFrom late February 2020, English care homes rapidly adapted their practices in response to the COVID-19 pandemic. In addition to accommodating new guidelines and policies, staff had to adjust to rapid reconfiguration of services external to the home that they would normally depend upon for support. This study examined the complex interdependencies of support as staff responded to COVID-19. The aim was to inform more effective responses to the ongoing pandemic, and to improve understanding of how to work with care home staff and organisations after the pandemic has passed.MethodsTen managers of registered care homes in the East Midlands of England were interviewed by videoconference or phone about their experiences of the crisis from a structured organisational perspective. Analysis used an adapted organisational framework analysis approach with a focus on social ties and interdependencies between organisations and individuals.ResultsThree key groups of interdependencies were identified: care processes and practice; resources; and governance. Care home staff had to deliver care in innovative ways, making high stakes decisions in circumstances defined by: fluid ties to organisations outside the care home; multiple, sometimes conflicting, sources of expertise and information; and a sense of deprioritisation by authorities. Organisational responses to the pandemic by central government resulted in resource constraints and additional work, and sometimes impaired the ability of staff and managers to make decisions. Local communities, including businesses, third-sector organisations and individuals, were key in helping care homes overcome challenges. Care homes, rather than competing, were found to work together to provide mutual support. Resilience in the system was a consequence of dedicated and resourceful staff using existing local networks, or forging new ones, to overcome barriers to care.ConclusionsThis study identified how interdependency between care home organisations, the surrounding community, and key statutory and non-statutory organisations beyond their locality, shaped decision making and care delivery during the pandemic. Recognising these interdependencies, and the expertise shown by care home managers and staff as they navigate them, is key to providing effective healthcare in care homes as the pandemic progresses, and as the sector recovers afterwards.

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Questionable practices despite good intentions: coping with risk and impact from dementia-related behaviours in care homes

Ageing and Society ◽

10.1017/s0144686x17000368 ◽

2017 ◽

Vol 38 (9) ◽

pp. 1933-1958 ◽

Cited By ~ 1

Author(s):

TAMARA BACKHOUSE ◽

BRIDGET PENHALE ◽

RICHARD GRAY ◽

ANNE KILLETT

Keyword(s):

Human Rights ◽

Psychological Symptoms ◽

Participant Observation ◽

Care Home ◽

Care Homes ◽

Service Development ◽

Ageing Population ◽

Term Care ◽

Staff Members ◽

Care Home Staff

ABSTRACTCare-home residents with dementia can experience behavioural and psychological symptoms such as aggression, agitation, anxiety, wandering, calling out and sexual disinhibition. Care-home staff have a duty to keep residents safe. However, residents with dementia can pose particular challenges in this area. In this paper, we draw on a study which explored how care-home staff manage dementia-related behaviours. In-depth ethnographic case studies at four separate care homes were conducted in England. These involved interviews with 40 care-home staff and 384 hours of participant observation. Our analysis showed that some residents with dementia experience behaviours which can either create risks for, or negatively impact on, themselves and/or other residents or staff members. It emerged that the consequences of the behaviours, rather than the behaviours themselves, created difficulties for staff. To cope with the risk and impact of behaviours, staff employed multiple strategies such as surveillance, resident placement, restrictions and forced care. Using the data, we explore how actions taken by staff to manage the risk and impact of behaviours in these communal settings relate to residents’ human rights. Our findings have particular relevance for care-home staff who need support and guidance in this area, for service development worldwide and for the global ageing population whose valued human rights may become under threat, if they require long-term care.

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Ethical dilemmas: balancing choice and risk with a duty of care in extending personalisation into the care home

Ageing and Society ◽

10.1017/s0144686x20001737 ◽

2020 ◽

pp. 1-22

Author(s):

Emma Miller ◽

Karen Barrie

Keyword(s):

Social Services ◽

Care Home ◽

Care Staff ◽

Care Homes ◽

Service Development ◽

Duty Of Care ◽

Ageing Population ◽

Home Life ◽

The United Kingdom ◽

And Control

Abstract The article reports the perspectives of senior care staff as part of a study exploring personalisation in care homes. Behind the conceptual sword and shield of ‘choice and control’ associated with personalisation in the United Kingdom (UK) lie irreconcilable flaws, thrown into sharp relief in this context. Personalisation, which originated in community-based social services, has recently been extended into UK care homes. This service development has been stimulated by a desire to promote a humane response to caring for an ageing population, whilst containing costs. Seemingly promoting a relational approach, personalisation also entails consumerist underpinnings, with consequent tensions resulting in weakened policy mechanisms. Discussing findings pertaining to ‘food and eating’, the article illustrates the complex interplay between supporting resident capabilities with poor staff ratios; when choice is not really choice at all; balancing choice, risk and the duty of care; and responding to diverse perspectives about what matters. This complexity reflects the highly skilled nature of care work as promoted by care ethicists. The tensions permeated care home life and found parallels in the wider system of care. Honesty about the limitations of choice and control is essential to achieve ethical care in care homes. The care home constitutes fertile ground for exposing and exploring the shortcomings of the ‘logic of choice’ and for advancing a more relational, inclusive and sustainable conceptualisation of personalisation.

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Social-distancing effectiveness tracking of the COVID-19 hotspot Stockholm

10.1101/2020.06.30.20143487 ◽

2020 ◽

Author(s):

Joachim Oberhammer

Keyword(s):

General Population ◽

Large Scale ◽

Care Home ◽

Self Regulation ◽

Care Homes ◽

Seasonal Effect ◽

Model Parameters ◽

Transmission Characteristics ◽

Social Distancing ◽

The Social

SummaryBackgroundThe COVID-19 outbreak in Stockholm, Sweden, is characterized by a near-absence of governmental interventions and high fatalities in the care home population. This study analyses the outbreak and the social-distancing effectiveness timeline in the general population and the care homes.MethodsA novel distributed-compartmental, time-variant epidemiological model was designed specifically for COVID-19 transmission characteristics, featuring a/pre/symptomatic transmission, a non-linear hospital model, a weakly-coupled sub-model for the care-home population, and parametrized continuous social-distancing functions. The model parameters and the social-distancing timelines are determined by randomization and Monte-Carlo simulations analysing real-world data.FindingsDespite a high initial reproduction number (3·29) and the near-absence of governmental interventions, the model quantitated that the transmission rate in the general population was suppressed by 73%, and in the care homes by 79%. The measures in the care homes took effect 4·8 days delayed; and if applied 4 or 8 days earlier, the fatalities could have been reduced by 63·2% or 89·9%. The infected population is estimated to 16·2% (June 10). An expected underestimation of population immunity by antibody studies is confirmed. The infection fatality ratio extrapolates to 0·61% (peak: 1·34%). The model indicates a seasonal effect which effectively suppressed a new rise. An analysed large-scale public event had no large influence. The asymptomatic ratio was determined to 35%.InterpretationThe proposed model and methods have proven to analyse a COVID-19 outbreak and to re-construct the social-distancing behaviour with unprecedented accuracy, confirming even minor details indicated by mobility-data analysis, and are applicable to other regions and other emerging infectious diseases of similar transmission characteristics. The self-regulation of the population in Stockholm, influenced by advices by the authorities, was able to suppress a COVID-19 outbreak to a level far beyond that the stringency index of governmental interventions suggests. Proper timing of effective measures in the care homes is important to reduce fatalities.

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Using routine data to benchmark quality and outcomes of diabetes care in the EU HEALTHPROS project

European Journal of Public Health ◽

10.1093/eurpub/ckz186.370 ◽

2019 ◽

Vol 29 (Supplement_4) ◽

Author(s):

F Carinci ◽

B Meza Torres ◽

S G Cunningham ◽

J Mainz ◽

O Groene ◽

...

Keyword(s):

Doctoral Students ◽

Large Scale ◽

International Comparisons ◽

Routine Data ◽

Educational Process ◽

Data Sources ◽

Data Systems ◽

Services Research ◽

The Impact ◽

The Eu

Abstract Background The EU-funded Marie Curie project HEALTHPROS aims to foster a new generation of “Healthcare Performance Intelligence Professionals” through a cohesive stream of 13 doctoral projects (www.healthpros-h2020.eu). Over 48 months, researchers will investigate key levers of healthcare improvement in 7 different countries, using methods drawn from the diverse fields of biostatistics, medical informatics and health services research. Objectives To describe barriers and enablers in the conduction of two doctoral projects aimed at exploring the impact of personal risk factors and organizational arrangements on lower extremity amputations in diabetes, through the use of large-scale databases from England, Scotland, Denmark and Germany. Results The research plan included a systematic review, structured comparison of data sources, predictive modelling and software development for automated international comparisons. Barriers encountered by researchers were: knowledge and access to data sources from different countries, dealing with data protection rules and the ability to carry out international comparisons when individual records are not easily allowed to leave national boundaries. Enabling factors included: a targeted educational process for risk modelling in diabetes and a multidisciplinary support team to help doctoral students overcoming the above barriers across different sites. Further clinical insight and contextual knowledge of data systems in place at different locations were needed in addition to the statistical, epidemiological and technical skills initially foreseen by the program. Conclusions The success of studies within a general educational program on health systems performance may depend from the continued support of a multidisciplinary team helping students in their educational process as well as with the practicalities of their research. International comparisons using routine data may require prioritisation to meet the tight timelines of doctoral theses. Key messages Academic programs for international comparisons in health care may be hampered by different type of barriers including technical aspects, legal regulations and a range of contextual factors. The establishment of multidisciplinary support teams may be essential for training doctoral students aiming to conduct international comparisons using routine data.

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